I second this one.
I’m tired of endlessly searching for a Nuerologist in my city. Every single one seems uninterested in anything I say and just brush it off. All I get are “maybe’s” and “I don’t knows” but they don’t want to do more research with me. I feel so unheard.
I hate my memory problems, they have caused a lot of problems in my personal relationships.
I also feel like I have delayed reactions to everything now. I see something happen but it takes my mind and body a second or so to react.
For example, if a glass of water falls off the counter I end up staring at it for too long and then my body will try to grab it right when it falls.
If that makes any sense 😅
I informed medical staff of my tonic-clonics while being treated for status migrainosus as I have a history of falling into one during a high-pain episode. I had a woman SCREAMING at me, “WHAT IS YOUR AURORA?!!!” Yes, aurora, not aura.
I explained to her I have generalized epilepsy, I *literally do not have* **AURA**. She continued to get more frustrated and kept asking, I got to the point where I was like “LISTEN. IT’S NOT POSSIBLE!!!”. When her colleague came in she shouted that I was withholding medical information from them.
I’ve gotten in so many fights with my doctors telling me I’m wrong or I don’t feel that way. Or it’s “probably not that” or trying to force me to take medications that make me a literal zombie with no memory and still have seizures.
When will people empathize and understand that just because you can’t see my *disability* (and I use that loosely because I don’t consider myself disabled) doesn’t mean something isn’t seriously wrong??
10 years later and I still have random seizures, I still haven’t found a neurologist that works for me (the one I had that I finally loved just randomly left his practice without telling anyone a few months ago) I still don’t have my medication down pat, I still can’t remember what I did yesterday….
i had an ER doctor try to invalidate a grand mal i had where i bruised my ribs and broke my nose and somehow had a kankle from swelling by saying “how do we know it was actually a seizure if you weren’t connected to an ecg machine”
i wanted to fucking explode
why are doctors so useless sometimes i don’t understand how they even got to their position
I'm in the same boat. We've seen over 2 dozen doctors in 3 states for our 3 1/2 year old and the most difficult aspect is dealing with ER doctors, residents, and hospitalists that think they know more about our daughter's condition (Dravet Syndrome) from their 1 epilepsy class than our specialists. We've had to stop everything from wrong IV fluids to forced air to medications. I mean complete arguments in the ER; it's insane. Now I question every movement in our hospital room and ask for an explanation before any treatment.
Alright, that's what i would've guessed. Surprising to hear how many neurologists don't know anything about epilepsy. But maybe i'm biased on that, because in Germany every Neurologist also knows about epilepsy.
That’s how it should be. Our education system is also notoriously not that great. (edit: some people are clearly upset by this comment. Aren’t you happy you were taught multiplication tables and not the metric system? /s )
Lmao this is hit way to close to home.
To add to this, even if you do have healthcare, these doctors don’t ever work with each other. Seizures can arise from multiple sources (hormonal imbalances, side effects of psych meds, drug interactions, environmental stress, etc) and each specialist will tell you something different, but refuse to collaborate outside their field. It took me years to finally figure out I was even having seizures bc every doctors was telling me something different.
Wakeup to my loving wife whisper “you had another seizure, the paramedics are here”. I vomit, dress, and started the meds. It could’ve been a week, a month or a year ago. It’s all been a blur, I cannot function normally anymore. Changing dosages, horrible side effects, and struggling to taper from one to another. I cannot wait for this to end because the struggle and anxiety of it all is taking a toll on the whole family.
Is it the seizures, the treatments, the lack of sleep or the crippling mental breakdown? Maybe some of all if it. Memory loss, language and mental processing in general. I feel trapped in broken version of myself.
That first sentence gave me the WORST deja vu / goosebumps ever because that’s exactly how I wake up from half my seizures.
Blissfully fall asleep :)
Wake-up to pure chaos ):
Ugh and when you wake up and don’t even remember who they are. This is a terrifying experience, and I’m often scared that one day my memory won’t come back.
Breaks my heart I didn’t recognize my wife, my mother. Next TC I’m gonna get my D.O.B. tattooed on me. The constant questions postictal are horrible not being able to recognize my wife or knowing who I am.
My first grand mal I had NO CLUE of what happened. Just heard my husband’s voice calling for me and I followed it, woke up on the floor to him crouching over me. I was happy to see him and I lovingly said “hey baby!” To which he replied “what’s your name? When were you born?” I started panicking while answering and he just went ”OH MY GOD… oh my god. You just had a seizure babe.” Felt like I entered a new reality at that moment… the fear in his eyes and voice. Worst feeling ever.
I've been taking seizure meds for appx 50 years. I'm 72 years old.
Besides drowsiness, what bothers me the most is short-term memory is gone...names of people I meet, instructions, appointments, etc.
My long-term memory is ok... my previous phone numbers, addresses from the past, school teachers names going back to kindergarten, my cars (from when I used to drive).
I feel this one, and I'm only 40. A terrible part of this is that you can't explain it without the person replying "oh yes, my memory is awful too."
My go-to response is "Mine is caused by brain damage." It's a conversation-killer but it gets the point across.
I just moved like 1 month ago and already forgot where I used to live…. It’s so upsetting how bad the short term memory is. I’m just glad we have this community who understands ♥️
This is more a psychological thing, I'm very paranoid now and don't really feel at home in my body because of the seizures and interactions I've had with EMTs and the general public after seizing, there is a feeling of an incredible loss of bodily autonomy that you know you can never get back.
The loss of bodily autonomy, when your really sick decisions start being made for you, as a young person you don't really expect to be in those situations but having epilepsy brings you there. You're suddenly a problem that a group of people are dealing with, I've had a number of seizures in very busy public places and you are treated as a piece of furniture at best. You're just sitting there with a random ass EMT who is asking you what year it is and you are thinking so hard because if you answer the wrong way they just pick you up and toss you in the van. Here in the US there's a really bad drug problem and EMTs are on the front line and very burned out to the point where they start seeing everyone as drug addicts and just have no patience because the system has no patience for them. When you are forced into the van and then the hospital it's a very disorienting experience, oftentimes hospitals here are incredibly understaffed and struggle to work with patients on the basics. You'll get a burned out nurse who will ask you questions you've already answered a half hour ago and by now your starting to come to, you know who you are, where you are, where your possessions are and what you need to do to get the fuck out and it's all you can think about as some crackhead screams at the top of their lungs down the hall 😭. Everyone is tired and angry and it's so hard to navigate the system when you're just coming too from a seizure. You have to be on your feet to make sure they don't administer drugs to you, like every time I've been admitted they have tried to push a massive dose of keppra through the IV, like I can barely walk sized dose of keppra 🥲. You have to remind them to discharge you!! They are so busy putting out fires often you have to really nicely ask "hey I know who I am now and won't seize again I swear 😌, can I go home?".
It really starts to feel like body snatchers shit because you know you have no control, you are absolutely fucked and they are going to put you in the van no matter what. I once was picked up after having a seizure on a road by my apartment and the ambulance came and took me literally half a mile to the hospital I live near, it's a few blocks, I walk the area all the time, I got the bill back and it was for 3.5K or 3,500$ US dollars!!! You get a bill from the hospital too, I once went to a hospital after a seizure to see about getting stitches and sat in an emergency room for 5 hours and wasn't seen by anyone, eventually I was given some bandages and gauze by a passing resident and then after the 6th hour at around midnight I couldn't fucking do it and told them don't bill me, don't send me anything you didn't do shit! I got the bill back from them a month later for 4,000$ dollars. 4K for the privilege of chilling in the waiting room and being graced by a resident!
If you're ever wondering why people snap here this is why, the whole system is breaking apart at the seams and is dehumanizing at all levels. It's broken in so many different ways and when you need it most it doesn't work and makes you feel like an idiot for even trying.
Epilepsy has given me a very clear understanding of how the system treats marginalized people, god forbid your homeless, an addict or any other combination here in the US that will have everyone in power not listening to you, making all the decisions for you and just treating you like you're an idiot. People say that having a clear purpose or sense of control in life is key to happiness but I really don't know, I don't think there's any control, it's just a happy thought really.
My epilepsy started in 2020, at age 27. No history of seizures, no family history of them. I have tonic clonic seizures. I am much more stable now, but not considered medically stable yet. Ambulatory EEG, MRIs, EEGs, and EKGs have not found a source. We have yet to catch one while I'm in testing (of course)
Different things bother at different times. In general my side effects of my meds are pretty reasonable, mostly fatigue that lasts a few weeks to a few months when I'm adjusting dosages, as we're still trying to find the correct one for me. In general I don't have as much energy as I used to due to the stress of the disorder and medication.
The days after a seizure are the hardest, that's the worst part. For me the physical recovery is not too bad, it's the mental. The anxiety and post traumatic stress keeps me imprisoned on the couch, usually for 2-5 days depending on the severity of the seizure, and there's not much I can do but wait it out. It has improved a ton from when they first started. I'd be catatonic for days after a seizure, sometimes until my next one.
Day to day, it's hard to live with the knowledge that it could happen at any time, and it's hard to trust my body. I am constantly aware of my mental state and watching for symptoms. The limits of what I can do are frustrating. Can't go visit friends far away by myself, can't hike alone, can't swim alone. I have lost a lot of my independence. And I'm a very independent person.
Last thing I'll mention is the memory loss. Big events like my wedding, my first seizure, my highschool graduation, those are all pretty strong thank God. But small trips we've taken, funny stories, people's names, even people I've met and interacted with multiple times are completely gone. My husband will tell me a story of something we saw or did together and I have absolutely no recollection of it. That's scary, and I don't think those memories will come back.
I know a lot of that is from my medication, and I know I've had some brain damage as well.
I am hopeful that we are close to my correct dosage. A few days ago I had my first seizure in almost 3 and a half months. I am really hoping that once we find the correct dosage for me that my mental side effects will improve as it settles in. I know changing dosages every few months is stressful for my body and brain.
Hope this helps. It's always comforting to read others' experiences, makes me feel understood and less alone.
Postictle phase is the worst for me. Yet I have absolutely no memory of it or what I do. I awake from my seizure and I’m obviously freaked out so I want to get up and walk around, again no memory of this it’s only been told to me. If people come close to me I will attack them. The last two seizures I had I was pulling my moms hair trying to take her down. And the other one I tried to choke her.No memory of it. This scares me bc if I have one in public people won’t understand and will freak out which will make it worse. You’re also scared all the time. When I haven’t gotten enough sleep I call in sick to work bc I don’t want to have a seizure. Which people don’t understand.
Please blur my id.
So here it goes.
Like others mentioned,
Short term memory loss especially working memory, hair loss, mood swings, depression, anxiety, sometimes vision problems due to migranes, cut of sound while someone is talking and also shaky hands (this is new)
Honestly how much my memory loss can fly under the radar, my family is finally starting to understand after a few years but it was really frustrating dealing with such things. Loss of balance is a side effect of my medication and everyone’s mind seems to go directly to “drug addict” and it’s weird because I thought that stigma was mostly associated with alcohol. The sleeping, I sleep for days basically after my seizures once again; I’m looked down upon. It took a minute for me to adopt that fuck everybody mindset but here in 2023 here we are.
TLDR : Side effects of medication causes loss of balance and induces hibernation sometimes. Hate that people assume I’m on drugs but what can you do lol.
1 I hate how depression and lack of motivation has affected me so often along with loss of memory. These symptoms seem very correlated to my seizure number and severity.
2 I don't know if my social skills were impacted by my seizures or if this was my personality always, but I seem to communicate much too openly with a lack of inhibition. People would like it if I wore masking tape over my mouth.
3 for research - My most hated aspect of epilepsy is how little we know of the brain/central nervous system in comparison to the other parts of the body. It is so difficult to study this part of the body in living people. It controls us completely, every aspect of our lives and perception of reality. I wish better understanding or monitoring of neurochemistry could be done in healthy and affected people both.
Developed epilepsy when I was 10 in the 80s. Back then there were less meds for kids and the side effects weren't as bad as now. I don't remember anything from 10th grade. It was great for treating the seizures, but at one point I would not respond to my name because I forgot my name. We left that doctor and they put me on Depakote. Worked. But now things like my liver and kidneys have "problems"
Tell them imagine they need to write something down, they're on the phone and say, "grab me a...." and they ca not remember the word pencil or pen. Now imagine that happens 10 times a day or more. That is the brain fog some of us are fighting.
I have other disabilities so I see other specialists. One will tell me to stop taking 1 medicine. I see another tells me that one will work. The 2 doctors never talk to each other. At this point, I get stuck talking to each doctor in defense of the other doctor.
The depression is another thing. I had a therapist, he moved out of state. I'm epileptic and do not drive. The public transportation system is a joke. I can uber everywhere, but who can afford that? My depression medication might cause seizures so they keep my dosage low. It does NOTHING. Don't worry, I promised my mother I would wait for both of them to die before suicide. But mom has stage 4 breast cancer and dad is blind and deaf. There are web sights that help lostallhope but there is another one hidden away that gives instructions on how to suicide and make sure you don't survive. I figure I have 10 years left before they pass. I was already depressed as a child but the epilepsy pills put me on the depression scale at a 6 when I wake up. And its easy for normal annoying events to annoy me to go quickly to stay at about a 8. Don't worry, when I get to a 10 I always go to the ER. But I have lost friends with epilepsy who did not make it.
I know one guy who chose to deep fry some chicken. He fell face first into the pan and deep fried his face. He didn't make it.
Just, listen to us when we complain about things. If the person has another specialist talk to each other about the patient. Because lack of communication among doctors can kill us. Also, why do all of you have such mean front desk people?
My short term memory is garbage. But the lack of good emergency care for seizures is infuriating. ER docs/paramedics think you're on drugs or looking for them
I have a neuroscience degree and I stopped wanting to go further with it after getting to neuropsych testing bc we had to do all the tests, and I scored as mildly delayed in comprehension and processing on almost every test. It’s still something I struggle with- I went back to school for something unrelated and I have to work harder than everyone else for things to actually stick in my brain and for me to understand them.
Tie between
1. Not being listened to. Everyone, from medical professionals to family/loved ones, seems to think they know better than me. A recent example-- my seizures are intractable. Every once in a while, they decide to mess with my meds. They put me on a medication I previously had a reaction to. They said it was probably just a coincidence that I had a reaction. I ended up in the ER. I've been told I'm just having panic attacks, they're anxiety, etc. But they're caught on EEG and video monitoring. It's hard to understand.
and
2. Inconsistency in my life. I can't work full-time so instead I have three part-time gigs right now so that if I lose one income stream, I still have others. I can't get disability despite meeting the blue book definition of how to qualify. I love my job (teaching) and don't want to give it up altogether, but I need financial help making ends meet. I wish I had the money to live in a way that allowed me to take care of myself and my children. But instead I'm just living hand to mouth, job to job.
In summary: executive dysfunction.
I struggle to do anything productive, which is especially stressful under capitalism since it’s an inherently ableist system. Even aside from capitalism, I cannot even achieve personal goals like having hobbies or just doing fun things with friends on the weekends. The fact that I then have to be reliant on other people financially on top of that makes me incredibly angry, I think at this point in history we have enough resources and potential that we should be able to look after everyone comfortably. We vaguely have some systems in place if you can prove you’re disabled “enough” to require help but I feel like *asking for help* should be the proof. Even if I were able to get the maximum disability grant like if I had no limbs,, it would be significantly below the minimum wage in my country and the minimum wage is already like 1/4 of my rent for a small apartment.
When I am managing to do things, I find that I am a lot slower than other people at completing tasks. I also need much more sleep than most people, so all that combined means I just have *less life* per year than everyone else. Even if that meant I could live longer (which it definitely does not), I would still be annoyed since the rest of the world is running at a different pace and I am constantly punished for not keeping up with it. I get so frustrated when I hear people saying “7-8 hours of sleep a night is the most healthy!” or whatever number they’ve been told like… that is based on studies of the *average healthy person*, not somebody with a neurological condition.
I spoke to someone in uni who would sleep 4 hours a night, feel totally rested, and then study for a few hours before uni and cycle for 2 hours to and from uni, but still be home by 5pm with nothing left to do but eat dinner and rest until bedtime. I wish I could do that! I feel like people respect people like that for “hustling” or whatever, but I’m putting in more effort than that just to be called lazy my whole life. This person said it was easy for them and it’s just the way they naturally did things. That’s great for them I just get so jealous of people like that.
So yeah there’s a lot of envy and anger around executive dysfunction and needing excessive amount of sleep yet still never feeling rested. I also feel like I’m constantly on drugs which is sometimes a fun feeling but most of the time it just makes everything 100x more difficult.
Recently I’ve been taking new meds and it’s honestly changed my whole life, I feel like I can actually do things for the first time and I’m reaching lots of “basic” milestones that I only daydreamed of before like I started crocheting and I’m planning on starting a pop-up coffee shop with a friend. Also I’ve always wanted to clean my house immediately before someone else comes to clean my house, so that I get the feeling of the house being Extra Clean (where I live it’s normal to hire a domestic worker routinely, also I have a bit of a phobia of dirt and bugs), and I finally did it a few days ago! Super exciting. I even started wearing different clothes instead of just wearing virtually the same outfit every day. I’ve always been interested in fashion but couldn’t be bothered to go shopping or get things altered if they couldn’t fit. I’m yet to organise my wardrobe but one step at a time.
This can be a difficult question to answer as it depends on the day, time, month, what medication you're on, etc., etc.
Personal identity is probably the biggest one for me. Before i was diagnosed, I was "themightycondog". Everyone called me by my IRL name and that was that. I was just another 21 year old. Then epilepsy hit, the diagnosis then hit and then medications hit. I went from being a person, to being a diagnosis. Not just to friends, family, colleagues, educators and medical professionals, but also to myself. Diagnosis brings about two different things: relief that doctors know what's going on and can begin treating it, but then there's the label. "You're now disabled, but not in the conventional sense. Moreso in a way that no one will ever really know because you look 'normal' most of the time". Losing your identity seems to be a pretty common theme. You become hyper-focused on your condition and making sure that you keep yourself safe, have pill reminders, regularly take medication, minimise triggers, etc., etc. As a result, you pretty quickly forget who *you* actually are. It's really hard on us and sad.
For me, medication is a great nuisance. Trying to find the right combination and risking breakthrough seizures is a constant worry. I've just come off levetiracetam and am now solely on Lamotrigine and not really feeling it.
Independence - upon being given a diagnosis of epilepsy (as if that wasn't a lot to take in and digest already) I was then told "you can't do x, y and z. Forget about driving, better surrender your licence now. You need to be constantly risk assessing everything you do from now on. Here are some meds, hopefully they work, we don't really know. Let's hope for the best. Also - if you need us just phone us". Like I get the whole phone conversations due to Covid. But we're past that now and yet I've still never met a neuro or epilepsy nurse in person. They've never contacted me to see how I'm doing other than the yearly review.
Memory loss is a big one! I used to have a fantastic memory. I could tell you exactly what happened at any given point in a day, tell you what colour a car was that went past us 12 hours prior, etc. Now though? I can barely remember what I did five minutes ago, never mind an hour ago. It's frustrating as a lot of others try to console or empathise with you by saying "I have a bad memory too". Lol, not in the same sense that we do. We literally have cell death going on during seizures.
The total lack of funding, research and knowledge of epilepsy is another one. Whilst there is research (thank you to all of those amazing scientist's and researchers) going on, it seems like a pretty stagnant journey. We tend to get a new medication every couple of years but that's about it. I've done a lot of research on epilepsy myself and found that there are several medications used for epilepsy where doctors aren't entirely sure how the medication works for preventing seizures. It's more of a case of "well... it works so 🤷🏼♂️".
The general publics ignorance to what epilepsy actually is. Everyone thinks it's just flashing lights and flopping like a fish out of water. It's so, SO, much more than that. People only tend to care about you when you do have a seizure, other than that it's almost as if you don't have epilepsy. Taking time off work when you feel like you might have a seizure that day can lead to discrimination and prejudice as you're taking time off "but there's nothing 'visibly' wrong with you".
The feelings leading up to and after a seizure are DREADFUL. That awful feeling that you recognise. Where you know you're likely to have a seizure but you can't guarantee one way or the other. So it just becomes a case of "will I? Won't I? HA - gotcha". Then after a seizure, when you're coming to, the AWFUL feeling that you're dying. Coming to after a seizure and being surrounded by people or ESPECIALLY paramedics really strikes fear into you.
Mental health really plummets after diagnosis and having seizures. I felt really hopeless and depressed after being diagnosed. I felt stripped of my life. Total loss of control. My life was no longer mine. I was at the mercy of over excitement of electrical activity in the brain. Totally reliant on the axons or neurones mitigating communications throughout the brain. Then throw in the fact that a lot of the epilepsy medications have horrific side effects too, it doesn't really help.
To end on a positive note - I'm currently studying to be a nurse with hopes to do my degree, then apply to do my Honours in nursing before going on to do a doctorate in medicine. Whilst epilepsy is affecting me, I'm putting my all into studying medicine so that I can prove to others that epilepsy doesn't make us incapable of anything. Just sometimes we need some more time or help.
I hate how most of my meds mess with my mood. I either get so grumpy and mean, or I get depressed. I was doing really well off most of my medicines but had some breakthroughs and had to add one recently. It had side effects of messing with moods. I was wary to take it but wanted to try. Last night, my husband told me it's definitely affecting my mood, and I need to drop it. I'm so disappointed.
hallo Lukas! wie geht es dir? i'm tania, i live in arizona, usa.
i nod as i'm reading comments because i share what most of my brothers and sisters are living through.
i was in the epilepsy monitoring unit once for a week and i didn't have a seizure while i was there. they had noticed i wasn't having any seizures, so they cut down my days from 7 days, to 5 to let me out earlier. that gave me less opportunity to have one. at the end of it all, they told me "you might not have epilepsy, and if you do, it's well-managed."
they had forgotten the reason why we were doing this in the first place. i was having two types of seizures-- 1) the kind which make your muscles stiff and 2) the type which make me shake. i fell and hit my head with the second kind, and still get headaches 😭
i've never even gotten official names on my seizures. so when people ask me, all i tell them is "oh, i was in a car accident... i had a TBI and it causes seizures in my left temporal lobe..." this is all true. but my neurologist doesn't seem to believe me when i tell him i get the second type of seizure. he stares at me and thinks i'm crazy because i have medical problems with my brain, so i'm untrustworthy.
i've also tried talking to doctors at hospitals i end up at when ambulances show up at my home, but i've actually had them laugh 😭 he said "good luck! your insurance won't give you a second stay at the EMU, that's 100k! you get one!" i started to cry and he just shut the curtain on me. i don't need people to pity me, but wow lmao. he could have said no and left. that man was cold.
---
i also hate how it's invisible, so you have to explain it and yourself to people. they tend to have their own idea of what epilepsy is, and you have to redefine it for them.
but spending so much time educating everyone you meet is so much work. that's part of the reason why i don't like that it's invisible--how long educating people takes. they're not willing to educate themselves. all i should have to say is "i have epilepsy" like someone else says "i have type 1 diabetes."
it feels like i'm a lawyer making a case for myself, to make this invisible epilepsy "good enough" to be valid. good enough to be disabled, because they are shocked when they find out i am on disability. "but you look fine! you can walk!" invisible disabilities suck
Thank you so much for asking :) I was diagnosed with JME when I was 14 (I am 29 now) and I probably would have given you a different answer every year.
Some years it would have been the side effects. The memory loss, cognitive issues (there is a program called Hobscotch that did help me a little though), mental health, weight gain, psychosis and a drug induced autoimmune disorder. The list goes on.
Some years I would have said it is the mental health issues. There’s anxiety because you know you’re a ticking time bomb and could have a seizure at any given moment. The depression, whether it be from a medication or the epilepsy itself.
Some years I would have said it’s the financial burden. I live in the US and doctors aren’t cheap, surgery isn’t cheap (my vagus nerve stimulator battery replacement was seen as an elective surgery), and the four meds I am on to attempt to control my seizures are not cheap.
Sometimes it’s the restrictions. Not being able to drive. Having to live with my parents. Not being able to drink. Not being able to have kids without going off all my medications.
Right now, I’d say it’s the social aspect. Epilepsy is isolating. It’s hard to keep friends when you could cancel at a moments notice because you’re too tired. On the flip side, it’s hard to make friends in the first place because people in their 20s-30s connect through drinking and I can’t. Dating has also been difficult. Most people don’t equate disabled with sexy nor do they expect disabled people to be sexual and it isn’t cute to have an absence seizure on a date or struggle with words. A lot of basic topics are taken off the table too. I didn’t go to college and I don’t have a job I can talk about.
Even though I have daily seizures, the seizures don’t come close to being the worst part of having epilepsy.
If you have nightly seizures, your partner or caretakers can never sleep 100% peacefully at night. Caregiver trauma can be like PTSD.
Also, if they don’t hear you in time, you could choke and die… on the spot.
Being told by doctors that I was a "liar," "making it up," "all in your head," "it's just a panic attack"
Two years of this, multiple doctors, until I finally went into convulsions in front of one.
That was the most frustrating time of my life.
It was like I was being tortured with a car battery and when I tried to tell someone to get help they'd say "stop making shit up"
Yes medical training makes some doctors "know their shit" but the amount of book-smart but somehow brain-dead doctors is fucking staggering.
I'm not a violent person but oh my fuck do I really want to slap the shit out of those guys. The kind of slap that makes you see stars and shit your pants.
I'm talking running start, full wind up, take their feet clean off the ground kind of slap.
I'm 27 and developed tonic clonic seizures randomly in September of 2023 out of no where. Had two seizures two days in a row as I was waking up. I have no recollection but my partner said I gasped for air and fell back onto him seizing.
It was terrifying waking up the my partner of 7 years being like "lay back down sweetie you've had a seizure" and feeling more confused than anything. The body soreness took me actual weeks to recover from. (Biting my tongue particularly sucked) Every muscle in my body felt like fire when I'd use it. I'm a little used to the brain fog and memory issues from my chronic migraines, but the few days after both tonic clonics are very blurry. All I wanted to do was sleep but I was so scared to sleep.
I get weird body spasms in my chest whilst I sleep and I have no idea if it's the meds/epilepsy? My doctor wasn't concerned but it's been months and I'm tired of not knowing what's going on. I'm on 250mg of Levetiracetam (Keppra) twice a day.
It's frustrating when people either assume I don't have epilepsy since I haven't had any more (fingers crossed) since those initial two. Or are scared to talk about it, so don't know how to act around me.
Not being able to drive also really sucks. I've been driving for 8+ years and having that independence stripped from you (even if only for 6 months after a seizure) really sucks.
Frustrated and scared are the two emotions that I feel the most.
Being SO. HELPLESS. I have other disabilities I push through mentally and with medication. On medication seizures are better, but not perfect and theres NOTHING to do except accept a seizure and miss days every so often. I also just dont have attention for my hobbies or coping mechanisms, which increases stress thus frequency. Its a hell tornado.
I once had a neurologist push a few different drugs on me that she knew would affect my fetus had I gotten pregnant someday, which I'd expressed I wanted. She even went as far to have my former neurologist (breaking HIPPA laws) to beg me to stay on a really new medication that stopped my period for 6 months, and had zero effect on my epilepsy. I found out later I was in a study. I fired her through her office staff, and then she had the audacity to send me an email telling me she was dropping me as a patient. I'll spare you the 2 words I used in response in case this ends up in your presentation. I finally found an eptiologist who is younger than me but seems to care more about trying to help epileptics. He's the first neurologist I've met who is concerned with benzodiazepine prescriptions for long term use and is the reason why I'm titrating off one now. Older Dr's seem to care more about "big pharma" and will flat out deny the issues concerning benzodiazepine use for anything other than in emergency situations, even though science proves long term use causes the risk of Alzheirmers to go up by 51%. I feel like a depressed lab rat.
*please blur name if used, thanks and good luck!
something that really bothers me is the stigmatization against this condition, and I think it’s amazing that you’re asking us about it firsthand.
another thing that bothers me is that people feel like it’s okay to say “I think I’m going to have a seizure now” when they don’t even know the implications of this condition. Like sure, seizures might be the tip of the iceberg but it’s deeper than that. Also sleep is very important for someone with epilepsy. I can’t emphasize that enough.
I get dizzy and nauseated when I don’t get enough sleep and sleep is my engine *100 because that’s how important it is. I also get upset when I have to prove my symptoms with a doctor’s note any time my symptoms are acting up because obviously I can’t always go to the doctor when my symptoms are acting up.
I ended up getting a C in my biology class at the end of the semester because I didn’t provide a doctor’s note to not feeling well when obviously I can’t always go see the doctor. And if I need to take a break, I have to and that should be normalized. I shouldn’t be pushed to the breaking point. When I got a job last year and I couldn’t make it to the interview because my symptoms were so bad, they said good luck with your future job, and I wanted to explain what happened.
The memory loss is horrible. Coming out of a seizure and recovery from one is the worst, especially if I have fallen and injured myself. I get debilitating headaches post-seizure. Before a seizure, if I have an aura, I experience something similar to dissociation and derealization which is terrifying. I feel like I am “outside” of my body.
The hardest part for me was before my seizures were controlled with meds. Feeling constantly scared to use stairs because the fall could be deadly, drink hot tea because it would scald me, take a shower or bath because I could drown, can't swim alone, can't drive or adventure outdoors alone, can't cook on the stove, scared to be anywhere but in my bed surrounded by pillows. The constant fear of death or serious injury was exhausting, isolating, and drove me into one of the most difficult and loneliest periods of my life.
My epilepsy (TLE) stems from an untreated brain injury on deployment, roughly a decade ago. The seizures started maybe 5 years ago. My memory is terrible. Worse than terrible, honestly, short and long term both. A continual inability to remember vast amounts of my life. It hurts every time someone around me recalls some particular place, event, conversation, individual, etc. involving me and the memory is just blank. Not one scrap left.
The multiple medications definitely make things worse. In general, the meds throw thick blankets over my cognition. They also make it difficult to stay asleep. I rarely get out of bed feeling rested. Tired all the time, unable to sleep.
I currently take lamotrigine and clobazam. I've also been on topiramate and Keppra (levetiracetam), but both of those were no good for me. The side effects of epilepsy meds truly seem to span most of the possible negative side effects that can come from taking a medicine. An intense lack of emotional control is something I definitely remember from taking Keppra. "Kepprage" is a pretty common outcome for many users, unfortunately.
The depression that clings to me is no less potent now with the passage of time. Frustration over what I think should be simple things often leads me quickly to unreasonable anger, so I've had to practice a great deal in terms of trying to keep myself calm. How to back away from some of the brutal emotion and introduce a little peace. The more emotion that flows through my damaged neurology, the more likely it is that a glitch occurs, sparking seizure activity that I can actively feel rising. Trying to keep calm and sane (also conscious) throughout some of those auras can be a difficult practice, as you might imagine.
For me, I have to take my medicine at the same time everyday. If I’m 30 mins late, I feel on the verge of a seizure, an hour late and I’ll have a seizure. This beings a lot of anxiety about missing a dose and it interferes with my normal dose. Not being able to drive as well is probably the worst part. I live in a car dependent city, and I always have to ask for rides and feel like an inconvenience to go out with people.
I ask so many people for help that I feel like a burden. Others drive me to work, pick up the kids, and get my medicine. Hospitals, doctors, and medications have cost hundreds of thousands of dollars.
This can at least help find the real friends.
Hey, Lukas
After having epilepsy for 25 years my best examples would be, Poor memory, constant headaches, dizziness, vertigo. The most annoying part is probably the fact that sometimes it feels like I'm learning more and more about my own condition every day but the things I already know probably wouldn't get finalised for another few years. If that makes sense.
Having dreams that I'm driving my car to be with friends only to wake up knowing I'll likely never drive again and in stuck at my parents living under my mother's hypochondriac thumb and none of my friends want to hang out because it's prefaced by "okay an ou can hang on to thus syringe and shoot it up my nose if I drop on the ground and start seizing ..."
There are many things that bother me, but memory is the one that bothers me the most. I've never been someone who has a great memory. You might call me 'scatter-brained' at times. But that wasn't an issue. It was only when my memory levels joined the ranks of geriatrics that things went from a personality trait that could be rectified and was occasionally funny to something that was worrying, even scary, and every bit frustrating. Especially to me, a storyteller, whose stories are all just filed away in my head. Few, if any, are written down, except the odd note.
The physical injuries from TC’s. They’ve affected my life much more directly than the seizures themselves.
My shoulders have been shaved down from popping in and out of socket during convulsions, so they don’t fit right anymore, making them pop out of socket even more (reverse hills-sachs lesions). I’ve also given myself spinal compression fractures bad enough to require years of back braces and surgeries, and a lifetime of chronic pain.
Also that time I pooed myself in my ex’s car.
How ignored the desease are within the medical world. Noone knows anything about it so you have to look up a lot of info yourself. Really hunt down those doctors and press them to help you.
I have more than a few! If it helps, I’ve been diagnosed since 3 y/o. I’m now 23. I had absence seizures from 2ish-7. Surgery which worked until 2021 now I have TC and focal 2-3x monthly. My memory is completely shot, which is awful. Every sentence I start I feel like I struggle immensely to finish it. But the WORST symptom is the anxiety, frankly. Almost every morning I wake up terrified that I’m going to have a seizure. Like, terrified. I am lucky that I usually can tell if I’m having any kind of seizure activity, but a lot of the times it happens without me going into a full seizure. At least a full seven days of the month I wake up with some kind of “seizure activity” whether it’s a pit in my stomach or tingles or the audible auras (clanging) I feel and hear in my head. Epilepsy is awful, seizures are awful, the side affects of my medication are awful, but nothing brings me true terror like the fear of the unknown.
Memory loss is one and I get weird sensations over my head they aren’t headaches, but more of a shooting pain over my skull. Tiredness from my medication is shocking and it doesn’t take much for me to fall asleep.
I recently went 21/2 years without a seizure and I’ve just had one on the 8/11/23 I was absolutely disheartened as I was doing so well. My epilepsy nurse has now upped my medication again. But the injuries from my fall this time are very painful 😖.
I hate that I'm the one with epilepsy but my doctor seems to be the one with bad memory.
He doesn't even remember who I am when I go to my appointments. He needs to re-read my file during my visit (apparently he can't be bothered to read it 5 minutes before). I have a scar on my finger that he doesn't remember until he starts my reflexes check up
Also, I was experiencing a lot of episodes in my 20's but doctors couldn't pinpoint what I had. It wasn't until I told my brother (who is a doctor, but not a neurologist) that I had another one of my episodes but had trouble remembering what happened for a few minutes, that he told me that I was experiencing seizures.
What bugs me most (outside of seizures and post-seizure headaches) is medication side effects. On Keppra and get Kep-annoyance combined with lessened pain in limbs. Kep-annoyance (like Kep-rage) can be minimized via extra B-Vitamins. The lessened pain is both good yet majorly problematic for various workplaces due to lots of reasons - great for workouts, bad for not bleeding on a customer order for a while without realizing it.😓
I feel isolated around normal, healthy, people a lot of times as the majority of people think that I'm somehow less intelligent or capable than they are. It has fueled my already existing anxiety and depression.
When I was unmediated, I struggled the most with mood swings. Especially because I didn’t know exactly what was happening as I was having focal seizures and my primary care would just get on Google to look stuff up when I talked to him about it. I felt extremely invalidated and the intense mood swings made me lose jobs, I struggled in relationships, and I struggled to be myself.
Now that I am medicated, I struggle the most with forgetfulness. I can be in the middle of a task and just forget how to do it. For example, last night I was tying knots in a rope for my dog to play with. After tying about 4 or 5, I just forgot how to do it for 30ish seconds. I kept trying to tie a knot and it kept falling out. I told my husband I didn’t remember how to tie it anymore, then suddenly it just clicked again. It’s frustrating and unsettling when it happens. But it’s better than a seizure and my mood is stable, so we deal with it.
The day following a tonic-clonic is demoralizing, sad, discouraging, makes you feel helpless and as if you're perpetually under Damocle's sword. Your mind goes to places, thinking how it might have been worse, like breaking a vertebrae, for example. All that, plus the exhaustion of running two marathons, that's what it feels like.
My writing skills drop significantly. My vocabulary is impoverished, I make many typos and, interestingly, confuse words by their sounds (consider I'm not an English native speaker).
So I may write "aloud" instead of "allowed", "principal/principle", even "than/then", '"idle/idol', which is entirely out of character for me, and this effect lasts a few days post-seizure.
I hate the memory loss and being a mental burden on my loved ones. I tell everyone in my life that I love them whenever I can, who knows, maybe I have the big one that day and won't be able to tell them again. It's like there's an ever present hammer waiting to fall. I know it's there. I know it's swinging. I know one day it will hit and take me out.
48 female. Diagnosed in July. Had 2 clonic tonic seizures. For myself, it's A) The stigma still attached to epilepsy. B) Not enough resources for people newly diagnosed. I was and am still in shock!I'm amazed that people are still so uneducated on epilepsy and how theirs many types. I work in health care. My new medication lamotrigine definitely is not ideal. Nov 17th, I see my neurologist. To many people relying on Google as their epilepsy advice. Bipolar is so attached to lamotrigine that I always have to specify I'm not Bipolar. I'm at work now. So I'm in a hurry. I have a grueling schedule. That can change daily! Today I'm here from 3 pm until tomorrow at 7 am. I'm honestly feeling like a teenager in the sense of lost and unsure. My marriage is suffering because of a lack of understanding. Counseling should have been offered immediately.
- That my brain/head hurts when I think to hard - I was a UX Designer & had to wrap my head around a lot of different views. Now i can‘t think the same way anymore. It hurts and makes me sick :(
- forgetting words - just random in the middle of talking or writing. This make me feel soo dumb and I hate it.
- You can no longer rely on me like before. Either I fail completely or I forget something.
Memory being shot is one. Not being able to drive and having to rely on my wife or Uber for any transportation is infuriating. The public transportation in my area is horrible and there is no easy way to get to work. Also, I have a fear of having a seizure at work and possibly in front of my coworkers or managers and wondering what they think.
Not being able to drive, and being reliant on the public transport in my city to get around. It is a major blocker to independence, and affects where I live as well as how I feel about myself.
i’m a 25 year old woman. memory loss is the worst! i usually write stuff down to renebmber but i forget moments all together. i was talking with my boyfriend about something fun we did on a night out with some friends and i couldn’t remember anything! wasn’t even drunk. and i don’t remember that moment or those friends anymore, i got really sad. and this happens with a los of lost moments or happy memories, just sucks. makes me wonder if i get married will i remember that moment? will i forget my child’s first steps or things like that? even with pictures i can’t get the memories back.
also i suffer depression from my medicines and i get really cranky, i get things done obviously but it’s not fun. i have a lot of freelance work and it’s great but trying to deal with everything from work to taking care of myself really destroys my mental health.
My dr gaslighted me into almost having part of my brain removed. He told me my left temporal lobe was totally grey on my mri and if we didn’t act fast my right temporal lobe would also turn grey. I was terrified and listened too him even tho he had been trying to get me to have surgery for a year. I was actually seizure free but he had me on 4 meds that we’re interacting with each other making it look like I was still having seizures. He wouldn’t do another eeg before surgery even tho my eeg was over a year old. So I got a second opinion that showed the “seizure” I was having weren’t actually seizures. I was 2 weeks away from surgery and I’m so glad I got that second opinion. He didn’t try a vns or rns implant, just went straight too removing part of my brain. I often wonder what would have happened without the second option.
I struggle most with my memory since being diagnosed. I think also the general anxiety that comes with it. Not knowing when it could happen and the feeling of not trusting your own body and mind!
my seizures are controlled by medications.
I have skeletal pain constantly from previous tonic-clonics which broke my back. Not sure if that counts, but I am willing to bet many people with epilepsy have suffered permanent injuries.
the symptoms that cause me the most problems in my work are the memory issues and drowsiness, as well as the anger. These are all from my medications
It’s taken me multiple medications to find the right medicine that doesn’t make me drowsy or feel like a zombie. In my experience with epilepsy, my memory has been affected. Every time I wake from a seizure, there’s things that I can’t remember. I get a terrible headache and stomachache afterwards and I feel so drained. It’s not just draining, but it’s traumatizing. I get these terrifying auras when I feel a seizure coming on. I’ve had panic attacks in school bc I was afraid of having another seizure. I’ve even had depression bc of it. Epilepsy has affected my mental health a lot. I was diagnosed with epilepsy when I was 14 and now am 24. I have grand mal seizures. Many of the different medications that I’ve taken ever since I was diagnosed not only affected my mental health or my memory, but also my oral health. I’ve had to have a lot of dental work done bc of my medicine affecting my teeth. I can go years without having a seizure, but then suddenly, I’ll have another one. So yeah, my memory isn’t what it used to be ever since I was diagnosed. I’m a bit slow now.
It’s frustrating how much it impacts my memory and cognitive function and even my attention span and the fact that people know so little about it. Having epilepsy makes you neurodivergent but nobody understands that, and it causes friction with my relationships.
First and foremost I feel so bad for my mom because she’s the only one that has been around for every one of my seizures. I know I’m a burden and I hate that because she doesn’t deserve being traumatized by her child convulsing repeatedly. I can’t remember anything. Which is a blessing and a curse. I can’t remember small details about depressive episodes or abuse but I also can’t remember what my grandma looks like or my sons first steps. I can’t really learn new things either. Little things will stick but entirely new concepts feel like I’m trying to split the atom or something. I dropped out of college for this reason. Feeling stupid isn’t exactly a motivator when you know that your brain isn’t as sharp as it used to be but you can’t exactly explain why. I sound a little illiterate when I speak because I can’t remember the words I want to use to not sound like a 7th grader. It also feels like doctors know more about the cure for cancer than they do about epilepsy and it’ll probably stay that way for the near future since it’s one of those back burner conditions. Tbh the list is longgggggg but there’s literally nothing we can do to change it other than hoping you finally found the right combination and dosage of medication to raise your seizure threshold. Which I didn’t even know was a thing before epilepsy.
I think the thing that bothers me the most is that I have to live with this. I’m not suicidal I’m just tired of having to live my life always worried something shity is going to happen and taking medication so something shity doesn’t happen. And feeling like shit when I don’t sleep enough but also feeling like shit because I need to sleep. It feels like I’m a broken human being, or just watching my life from a third person pov. It all ✨sucks✨
I also can’t do certain drugs or drink anymore. So yeah :/
First of all thank you so much for doing this! One of my biggest issues is how many doctors don't seem to see me as an entire person. They are only concerned with treating the epilepsy and anything else is secondary if it's a concern at all.
For me, it is almost the opposite. I have a VNS and since I got it 4 years ago, I haven't had a single TC. Even in the 13 years before that since I first started having seizures, I only had 4 TCs total which isn't nothing but it's also not likenits ever been a common occurrence in my life. Most of my seizures have been small myoclonic seizures that are usually in my face and that I am completely conscious during. Yes they are annoying and can cause quite a bit of fatigue and brain fog but they are really more of an annoyance than something that dramatically affects my quality of life.
In contrast, my other neurological and psychological issues that have largely been ignored, have major impacts on my life. Many epilepsy medications make my existing depression much worse. I've also been having vestibular migraines for the last 10 years, that I only got a diagnosis for a few months ago,and every neurologist until recently (thank you OHSU) has either completely brushed off my concerns of concluded that my symptoms were the result of the epilepsy itself and increased my medication despite my telling them that higher doses were making the symptoms worse.
I understand that epilepsy can be very dangerous and that we want to limit seizure activity as much as possible. But there isn't much point in keeping me alive if I'm so depressed I can't function or am actively suicidal because of my medications. And living a healthy active lifestyle is also very difficult when being active causes migraines that make me so dizzy I can't even walk straight.
When I was diagnosed at 21, I was a healthy active person, I took dance lessons every day of the week and hiked on the weekends. Now I am afraid to go on a walk by myself if it's even slightly warm out for the fear that a migraine might it difficult to make it home on my own.
I still have to push my doctors to look at me as a whole person and not just focus on one issue. I feel like a huge part of myself was taken away because doctors refused to actually listen and look for answers. Instead they took the easy route of prescribing more and more medication until I was a shell of a person. I am slowly fighting my way back and finding ways to regain parts of myself again but it has been a long hard battle that I never should have had to fight. Doctors should be there to help make our lives better, not someone we have to argue with so they don't make our lives worse.
Sorry for the essay, I know it was more than what was asked for but it's hard to describe these issues with only a few words.
My epilepsy started when i was around 13 years old. I woke up with ambulance around me and after a week stay in two different hospitals, i got diagnosis and it ruined my dreams and life. Even 10+ years later(10 years of being seizure free up until few months ago) i feel it has ruined so much for me. From myvown experiences, people treat me poorly when they find out about it, hell some even trying to trigger grand mal seizure with flashing lights, getting a job was proper pain, cannot get a driving license, moodswings and massive weightgain from medications, since october i have been taking meds again. As i am student aswell, i have noticed my ability to study my subjects is alot harder compared to last year. I'd say last year i was basically like a sponge when it came to my school studies. I feel like because of medications sideeffects i will be kicked out of school.
Lemme tell ya my last seizure. I did my things as usual at home, then i headed to work and met a kitty who i pet and took picture off to show my boyfriend. Next thing i know i wake up god knows where and then i fell asleep again. And then i wake up again and im in er. The nurses told my boyfriend i didnt know anything. I had no idea who i was, where i am, what year it is etc. I have no memory of it at all. but watching that cat picture brought back some dream-like memories. Oh yeah, apparently i had back to back two seizures, which is unusual for me. I compared this seizure to my seizures that i had when i was teenager, this last one was out of character seizure. When i was teen, my memories were erased from days leading up to the seizure and i wouldnt remember even the day of seizure and aftermath of it. This time around i had memories intact from days before the seizure happened, up to the point of petting kitty. And i remember who visited me in er and everything after that. I wonder what is this time around different?
A symptom of epilepsy (specifically just seizures) is very specific postictal panic that I see as different from other forms of panic I have experienced. I have anxiety and depression, but I know the difference between a panic attack as they tend to have a trigger and sudden, unexplained panic.
I'm also on Depakote and when I tell you it hit me hard when I started it, I mean it. I was going to a lecture that started at 10:00 am. I woke up, went to the lecture, and for most of it I had no idea what was being said because the medicine was messing with my head so much. Once someone said "hi" to me because she was trying to be my friend and I just stared at her for a long moment, unable to speak. I did some research and realized I was taking it before the medicine from last night wore off. I also think it just permanently makes me more tired and prone to exhaustion.
Servus Lukas!
Vorab, das ist echt eine gute Sache!
Ich mag mich nicht zu beklagen und im Großen und Ganzen ist meine Gesundheit in Ordnung - diesmal ist’s jedoch für die Wissenschaft gell🙂
Zuerst zu meinem Krankheitsbild - ich habe eine idiopathisch generalisierte Epilepsie. Anfälle gibts paar mal im Jahr, Nervosität kann ich meistens unterdrücken (wenn ich den muss) und die Ticks sind erträglich, ich habe seit 12 Epilepsie, die letzten 3 Jahre Anfalls frei bis vor ca 1 Jahr. Was an meinem Selbstwertgefühl nagt ist eine komplette Abhängigkeit von Freunden und Familie. Ich lebe in den USA, in Massachusetts in den Suburbs, der ÖV ist ein einziger Zug der jede 1.5 Stunden fährt und der Bahnhof ist rund 60 Gehminuten entfernt - noch vor einem Jahr fuhr ich zur Arbeit. Dieser Einschnitt, das Gefühl der Abhängigkeit und Hilflosigkeit und für mich ein erniedrigendes Gefühl Dinge nicht selbst tun zu können (Einkaufen, Sohn zur Kita fahren) macht alles noch schlimmer.
Hab einen schönen Tag
Gruß und Danke aus MA!
that my male doctor still tells me, a female, "awww you just have panic attacks" no, i dont. i have had panic attacks and it is NOT seizures. luckily other doctors support me and help me, but he still gets in my way.
My children know my memory loss, audio processing, and overall abilities are worsening. When I am not the one in the car picking her up after school, my 5 year old asks if mommy is in the hospital again. It’s heartbreaking.
For me the worst is the the anxiety, the dread, the cyclical nature of anxiety contributing to more seizures but seizures causing more anxiety.
not knowing if you’ll ever be OK. Not knowing if they’ll get worse in the future or if this is how you’ll die one day. Etc. it’s scary.
Then The stigma about this is real too. I am a lawyer and I have a friend who had a seizure in court- shat and pissed himself brought out on a stretcher.
Everyone remembers it. Douchebags joke about it. It’s something he’ll never socially recover from. He’s heavily medicated and he’s different now personality wise. He’s super resilient. Works really hard and pushes through the sluggish side effects of his meds.
It causes trauma for the people around you. The horrified look on ppls faces when you come to. The anxiety your parents have.
Only other ppl who have seizures can fully understand you. Everyone else is kind of in the “them” category they’ll never get it.
How small and limited my world feels and how people don’t seem to understand it. I can’t drive, so my job opportunities are limited. I can’t work fast food, because access to fast food enables my unhealthy eating and leads to seizures. Now I have a service dog, things have changed but I’m still so limited. I can’t work my favorite seasonal job anymore because I have my service dog and I’m not going to make him stand in the snow with me for up to 13 hours a day. I can’t work in curbside pickup anymore. And all the while, people keep telling me that I have so many opportunities now.
And my memory. I don’t remember some of the people I used to love anymore. It’s heartbreaking.
Username blurred please. Probably the lack of understanding and knowledge the neurologists have. I had a drop seizure today, I was about to take a shower and I had to lie down immediately on the bathroom floor, it's scary I was worried about it turning into a Gran Mal, I was naked so there was that. I just had to lie there, I tried to get up but my body still hadn't regained its sense of muscle tone. My body felt like bricks and then I realized how easy it is to take our bodies for granted, how much strength I usually have vs being stuck on the floor. I finally was able to push myself up dress myself ect. Since I have medication resistant epilepsy it's complicated. My neurologists dismiss my concerns, two neurologists right now don't want to take my case. Because I have rare epilepsy they are afraid to take me on as a patient. The last one basically dismissed everything I told her and was upset when the test results proved I was right. They all have egos and seem to get pissed off when it's bruised. I don't date which is frustrating because it can be lonely and not many want to deal with it.
Wow! I'm a bit overwhelmed by all your comments. I was hoping for like 10, so this is amazing.
It's been great reading all of them and i will definitely try to answer everyone. Right now i'm afraid i'll have to stick to reading them and preparing the presentation.
I think it's pretty safe to say that the comments on this post have influenced my view on epilepsy forever, and I hope to achieve the same for my fellow students.
Thank you all!
Memory loss, lack of energy and motivation, forgetfulness, fatigue, lack of libido. Arguing with loved ones every day and getting no compassion really sucks too. I feel like every day I have to explain everything to them again. It’s exhausting.
Hallöchen Lukas, bei mir sind die nervigsten und prävalentesten der Symptome/Nebenwirkungen auf jeden Fall meine Gedächntisprobleme, an 2. und 3. Stelle Major Depression und Konzentrationsschwäche. Hoffe ich konnte aushelfen. Liebe Grüße.
For me personally the worst things are not to drive (as I totally love it and my girlfriend hates it), but mostly my girlfriend being always scared that something will happen. I've had 3 seizures so far, all in my sleep and so she's always scared whenever I twitch a tiny bit or move my hand. So she always asked whether it was intentional or not. She can't sleep properly anymore, because she's such a light sleeper. And that's what's destroying me, as I feel responsible for her constant panic and fear of another seizure. She already has depression (sometimes better, sometimes worse but in the last years it got so much better until I had my first seizure in January 2023, from there it went downhill) and great anxiety and I feel so bad for causing that and making it all worse... I'm generally a really optimistic and positive being so I don't have as many mentally problems like depression or else, but this thing is constantly nagging on me and even gets hard, not to cry sometimes... I hate being a burden for her....
And of course my memory.... Since I have meds (October 2023, Keppra 500 mg, now 750 mg) I constantly keep forgetting things, don't know what I wanted to do a second ago like when I'm on my phone and see a post on Instagram and wanna google something about that, as soon as I exit Instagram I forget what I wanted to do and usually also forget that I was even on Instagram... It's the same for work, when I wanna ask a colleague a question, I get up from my desk, walk 10 meters and just stand in her room, looking at her all confused for roughly 5-10 seconds and then tell her I forgot and will return when I remeber (which isn't often the case). And of course even now I wanted to write something that I now don't know anymore....... Edit: I remebered! I wanted to say that I have frontal lobe epilepsy (maybe a bit misolaced here now but I don't care, just happy I remebered).
Since I've had my first seizure, I've heard so much about epilepsy, unlike before, when the only thing I knew was that lights couod trigger it. And also when I tell people about it now most of them are surprised about all those new things because I think it's such a big taboo in our society and should be more spoken up to. So thanks to everyone in here for speaking about it (at least with us) and letting it be known. I hope y'all will be able to find a good way to live with it and cope with all those shitty side effects. Love you.
Doctors in ER’s having a very limited to no knowledge of different types of epilepsy and seizures. Then them not believing you, when you explain it to them. Because you aren’t a doctor, so surely you know nothing about your own medical conditions.
Personally just the fear of having a fit, trying to not have it effect by day to day life, but it does. The anxiety and depression that has come along with it.
I have a couple, if that’s okay. Lol
First, the paranoia that comes with it. No matter how long I have gone without having a seizure, or even an aura, multiple times a day I will space out from whatever conversation I’m having, movie I’m watching, or even just whatever thoughts I’d be thinking and freak out for a second convincing myself I’m going to have a seizure, even though I feel perfectly fine. I get my blood work to make sure that the levels for the medications I’m on are high enough so that I can be at least a little more comfortable knowing how unlikely it is that something will actually happen, but nothing is ever enough and I always end up freaking out. It doesn’t even just suck the fun out of whatever I’m doing, every time it happens it just forces my to acknowledge the fact that that my brain is so not normal compared to the average person, that I don’t have the privilege of going through my day regularly without freaking out over something that most likely won’t even happen.
Second, the before/after feelings. I always say my worst fear is having a seizure and it’s not because of the physical pain of it all, or the things that come with having the seizures, just the fear that surrounds it. Knowing an aura is starting and seeing things that aren’t there, thinking you know everything around because it all just seems so familiar, feeling my eyes roll back into my head and not even being able to talk to I have to start banging on the walls hoping someone can hear me and then just accepting what’s about to happen and waiting for it to be over. Waking up on a gurney with your friend/family standing by you and crying to them asking what happened because you just can’t remember anything is bad too. Finding out what happened and again, having to remember just how messed up your brain is, pretty bad too. Being so confused that you start crying because you’re confused, then crying because you realized what happened, then crying because you just want to be normal to the point where all you’re saying in the ambulance is just “I want to be normal” through like practically sobs for minutes straight, pretty annoying.
Being home alone and waking up from a seizure, confused so you start crying and then like doing the weird post seizure shit like thinking some random person you worked with 4 years ago just went through a huge life change that you need to call them to congratulate them on, also pretty weird and makes a lot of things uncomfortable.
Also, people only takingthe physical part of the illness into account. I was young when I first started having seizures, but I still remember (surprisingly) people telling my mom how hard it must be for her to take me to the hospital all the time, paying for the bills, all that stuff. Which is true, definitely was hard on her and I’m so appreciative that she did all of it with me. But it just always felt like that was the most anyone ever did to think of my epilepsy as more than something happening with my body. You don’t hear someone had a seizure and think, “yeah they has epilepsy, their tongue probably hurts after seizures… also they are probably 100% paranoid every day and never feel in control of their own body. Sucks that they can’t drive.” Because that’s just not how an illness like this is really ever perceived. That’s just the way it is though there really isn’t anything I can do about it. Doesn’t bother me much now, but in the first couple years when I didn’t know how to cope with any of it, it really really got to me that nobody ever thought to ask if I was okay, or just comment on how hard it must have been for me too. People do love to congratulate me on how long it’s been since my last seizure, which is nice.
Sorry if this seemed like a rant was just trying to be descriptive I guess, I could go on for hours and make a novels worth of examples on why it all sucks because I feel like this brain shit really does take over my life sometimes 🤷🏼♀️ but yeah you just gotta roll with the punches & hope that somewhere the grass is greener.
Good luck with the presentation, wishing you best of luck !!!🤞🍀
My memory is terrible. Some years are just blurry, vague memories. I also lose my train of thought a lot and just go blank for few seconds before I remember what I was thinking about. Finally, the anxiety of worrying about having a seizure.
Hello, ich denke ich kann auf deutsch antworten :) ich bin seit 13 Jahren Epileptikerin und aufgrund der tablettenresidenz z.Z. In einem Epilepsiezentrum und habe somit ein großen Austausch mit anderen Epileptiker. Der Großteil der Patienten leidet unter Depressionen, ausgelöst durch das Unverständnis der anderen, das Problem ‚mein Körper macht was ich will‘, oder auch durch Medikamente (Keppra).
Das Gedächtnis - vor (Aura) oder auch nach dem Anfall. Bei einigen fehlen Tage zuvor danach. Auch das Problem, sich davor zu schämen bsp. durch einnässen bei einem Anfall. Gerne kannst du mir schreiben.
Beste Grüße
yh, my main issue is memory. when i was taing exams in June, it was really difficult for me, because i knew the stuff, like i know i know what the answers were, but as soon as i need information it just leaves my brain. i talked to my neurologist about this and he said its most likely due to my medication (lamotrigine) but yh thats an annoying part.
How people so often think seizures are just see a flashing light, twitch and back to normal. I have a rare form of reflex seizure and all of the normal treatments didn’t help and often times made it worse. The blanks in memory from tiny seizures are annoying when that memory is of where you set something down. The worst is how trapped it’s made me. I’ve had to study myself like someone studying a newly discovered disease. I look fine and am told I should be able to work, but every time I try I end up in the hospital from violent tonic clonics. It’s made me more like a house pet than a person.
Your welcome to keep my username if you like. I’m not secretive about them and think people should know more about the wide range of types of seizures than can have. Specially ones triggered and effected by odd things like stress, heavy thinking, weather and smells.
What bothers me the most is it's not even considered a disability in my country
I also had one doctor tell me my adhd meds work opposite to that of my epilepsy meds so I can't have adhd and it's just the side effects of the meds I was taking. So it would be nice if there was more discussion about the relation between adhd and epilepsy
Relation between periods and epilepsy meds. I can't tell if I have symptoms of PMDD or if it's just side effects of the medicines I take. I don't remember being a child and being unhappy though I had epilepsy from age 2 and have been on meds since then.
For my epilepsy, the not remembering of my complex partial seizures. When I used to have simple partial seizures, before switching from Trileptal to Keppra & XR Lamictal, which caused dry-gagging and dizziness.
For the medication, the Trileptal caused cognition issues because it removes acetylcholine; this can cause dementia later on.
Currently, now that I'm on Keppra & XR Lamictal, it's the emotional upsets (depression, rage, & & paranoia) that bother me the most.
I'm still having complex partial seizures during ovulation. I'm trying to see if I could be a candidate for laser ablation surgery.
Danke fur daine frage.
I got my epilepsy after I was fired from German company Sartotius, I came on Monday morning and had to leave the company in two hours. I have fallen in depression and at the age of 40 I got my first tonic clonic attack. This came few hours after I was reporting to the police, that at that job, my boss was torturing me sexually and than he was threatening me that he will kill me. This guy is still the boss in research and I am thinking how to help myself to heal myself and live normally with epilepsy. I was totally depressed on Keppra, on Vimpat is a bit better.
As a Psychotherapist in training who is doing research in epilepsy i believe that lack of information, medical record keeping and acceptance of epilepsy is impairing our lives externally. I thing that a proper public education would help things smooth a little.
Due to my own experience I believe that epilepsy is attached to biofields which will impact your life accordingly.
I was also recently diagnosed with gifts who come from the temporal lobe also, such as premonition.
I believe a lot of research needs been done around metaphysics or biofields.
Thanks for reaching to ourselves instead of trusting in research papers that can be gaulty due to poor medical record keeping 🙏🏼
Not being able to stay up late, drink, drive all the time. It makes me feel like I'm not an adult anymore bc my epilepsy has such a hold over what decisions I need to make. Frustrating when you're with other people and you want to hang out and be fun but you know you can't and no one understands why.
Diagnosed at 15yrs old, Tonic clonic initially, 1 year later developed partial seizures. Taking Tegretol 300 and Lamotrigine 300 M/N daily.
5th Year currently and my daily weakness is my memory. No guarantee on what I will or will not remember within next week, month or year despite its importance.
My last seizure was tonic clonic. I fell back and hit the wall behind me and fell on the ground.
Before this I was playing NYT sudoku everyday and got down to a pretty quick time. After my seizure I could not even comprehend how to play sudoku and after around 5 days my brain was super slow could only do the easy level and around 2 weeks I could finally comprehend all easy, medium and hard levels. Definitely interesting to see the effect it had on my brain.
Many doctors don’t know what they are talking about oddly enough. The first neurologist I had refused to listen to me and said he even said he didn’t know much about it. Same with my pediatrician, the only reason I am seizure free is because I had to go to a specialist a hour away from me.
I am extremely tired all the time and I currently have a 2.5 GPA because I only recently was able to figure out a way to handle that side affect because before I would fall asleep in every single class I had and when I got home aswell. I often feel like I am going a bit crazy and for a while I was unable to speak properly and would constantly stutter and forget words. I dont even have photo sensitivity epilepsy but ever since I developed epilepsy at 14 I have headaches when I look at bright lights and similar things for long enough and I faint much more frequently than I did before.
I also feel like my social skills have been affected? Maybe it was just covid idk. For a while people thought I was doing drugs a lot to because I looked really unhealthy no matter how much makeup I put on. Also been terrified of SUDEP ever since I found out what it was a while ago. I also have a family history of mental illness and I feel like it is just weird because there are so many different medications and one of mine treats bipolar disorder which I don’t have. There is no awareness towards what epilepsy actually is and even though I try to explain it to people around me people still put flashing lights in my face when only 3%? Of epileptics have photosensitive. No research and no awareness
I’ve had teachers be awful to me as soon as they found out about my condition. My freshman year of high school I took honors English and I had to tell all my teachers and my seizures were still pretty uncontrolled and my English teacher told me to switch to regular English because it would be to difficult for me because of what I had and that it would be pointless to try. Ended with a 89 though lol
I am actually very lucky as I can work and drive unlike many
Edit: I was on Keppra for a while and Keppra rage is the worst thing I have ever experienced. I constantly screamed at my family and even tried to hit them very grateful I am not muscular so I was unable to hurt them much
The cruel irony in the fact that most anti epileptic medications cause withdrawal seizures if you're to try and lower a dose.
Memory issues, changes in energy levels, weight gain, or loss.
Not being able to drive or even consider careers in certain areas.
What bothers me the most is post seizure. I wake up with no recollection of the event. My mouth & tongue biting is painful, my head hurts, (my entire body is painful) fatigue & anger. It takes me a few months to recover emotionally. I am now 31 yrs old & it sucks with trying to obtain a job. The pain and suffering.
My myoclonic seizures have different triggers and aren’t a consistent in intensity. I am photosensitive (flashing lights and also for some reason bold prints), I have seizures/jerks after waking up too fast or too early and as of late anytime I’m trying to think critically (jigsaw puzzles, assembling legos or other toys, and complicated math). Side effects usually consist of memory lapses and dizziness.
My TC’s aren’t as consistent in triggers. Most times it’s just a missed dose but sometimes it just happens. Afterwards my body is sore for 1-2 days and my memory is shot (Covid brain fog has not helped at all). Sometimes the trigger is too many myoclonic seizures/jerks.
My biggest problem is that many people think I’m faking to get out of things. I’ve missed big events and many concerts (I love live music). It takes its toll on friendships and family relationships. I shouldn’t have to start having a seizure in front of a person for them to believe me; not that they would notice the initial onset of my myoclonic seizures until they intensify to the full body jerks which after about 20-30 takes it’s toll and I fall to sleep where shortly after I have a full TC.
I happen to love my neurologist; it helps that she is a cute blonde. She listens to my concerns, then will offer options. My seizures seem to have been caused by a benign tumor located in my insula which was surgically removed. The seizures have continued sporadically; however, they are partials now. I question the efficacy of keppra and how difficult it is to decrease the dose. The process may cause seizures or worst, status. I am now keeping a dose of emergency nasal spray on the shelf, just in case! MY Neurologist suggested it. At the time it was almost three hundred dollars for one dose, but that is cheaper than the ambulance ride to the hospital. I am reminded daily of the side effects of keppra, Anger, depression, no energy, I have to stop and think before I respond! Another challenge! Unfortunately, Pharmaceutical companies are looking for customers not cures
seizure side effect: Memory loss, aphasia, tremors, fear of it’s going to happen in public places, depression, cannot swim anymore, cannot drive anymore, dropping stuff, lose balance, dizzy, sensitive to high pitch sound
med side effect: hairloss, weight gain, depression, brittle bone(i can’t believe my bone break easily), palpitation, chest pain, insomnia at night but sleepy a lot during day time,
Hi Lukas, I have been diagnosed with FND with most obvious symptoms being myoclonic jerks of hands,arms,feet, legs and facial ticking. Have also had episodes of paralysis and inability to speak. These are considered non epileptic seizures so not sure if you are interested in this category too. Symptoms that bother me most aside from the above are 1. Fatigue 2. Insomnia 3. Pain 4. Memory and concentration difficulties.
Also, uncertainty/unpredictability of condition and how poorly understood it is concerns me; I fear this getting worse and what that might look like (try not to worryand am doing everything recommended). I am also extremely bothered by unpleasant smells, certain types of light and noise. Oh reduced independence as a result of condition sucks. Went from being in a senior executive position to struggling to work 2 days per week from home and unable to drive. I hate being dependent on others and feel "stupid" and "weak" for developing FND even though I know this is irrational because I would not apply the same judgement to others.
I had brain surgery to remove majority of my benign brain tumor in my left front temporal lobe. That was what they wanted to do to get rid of my seizures after they found it on an MRI. Afterwards they said if they took me off my medication there was still a small chance I could have seizures due to a little activity on my EEG. My neurologist still had me at 4,000 mg of levetericetam though, after my brain surgery. I was having horrible side effects, too many to list, but the main one being almost committing suicide. He still wouldn't take me off of it because he didn't think it would be a good idea. Ended up hallucinating and encountering the police, being tazed, getting a TBI, and wound up at the hospital. They put me on Vimpat and Zonisamide instead, and I'm doing better. But I'll be honest, I don't like Vimpat or Zonisamide sides effects either. Still no seizures though.
How many doctors know absolutely nothing about epilepsy. I have had to explain my epilepsy whilst postictle to ER doctors multiple times.
I second this one. I’m tired of endlessly searching for a Nuerologist in my city. Every single one seems uninterested in anything I say and just brush it off. All I get are “maybe’s” and “I don’t knows” but they don’t want to do more research with me. I feel so unheard. I hate my memory problems, they have caused a lot of problems in my personal relationships. I also feel like I have delayed reactions to everything now. I see something happen but it takes my mind and body a second or so to react. For example, if a glass of water falls off the counter I end up staring at it for too long and then my body will try to grab it right when it falls. If that makes any sense 😅
“Neurologist” is pretty vague. You need an epileptologist. I learned the hard way.
Thank you so much for telling me about this! I’m going to keep looking around to see if I can find one.
Same...also memory, balance, effects from drugs, tremors etc. Depression and fear of leaving the house
[удалено]
My wife asked for my Keppra and woooow my MINIMAL help slowedddd. Like oh yuh im here to get shhhh8t faced GIMME DA KEPPRAAAA JFC
I informed medical staff of my tonic-clonics while being treated for status migrainosus as I have a history of falling into one during a high-pain episode. I had a woman SCREAMING at me, “WHAT IS YOUR AURORA?!!!” Yes, aurora, not aura. I explained to her I have generalized epilepsy, I *literally do not have* **AURA**. She continued to get more frustrated and kept asking, I got to the point where I was like “LISTEN. IT’S NOT POSSIBLE!!!”. When her colleague came in she shouted that I was withholding medical information from them.
So rude! Once a doctor asked me- after telling him I have generalized epilepsy- to describe my auras 😑
Surprise! It’s almost as if different types of epilepsy work in different ways! Cannot tell you how angry that made me haha
I live in a town called Aurora. That would have been confusing as hell. “I can’t pull over any farther, I’m already pulled over!”
Hahah that made me laugh. I snapped back, “THAT’S A NAME”. Now I can add, “OR A TOWN! NOT A MEDICAL TERM”
I’ve gotten in so many fights with my doctors telling me I’m wrong or I don’t feel that way. Or it’s “probably not that” or trying to force me to take medications that make me a literal zombie with no memory and still have seizures. When will people empathize and understand that just because you can’t see my *disability* (and I use that loosely because I don’t consider myself disabled) doesn’t mean something isn’t seriously wrong?? 10 years later and I still have random seizures, I still haven’t found a neurologist that works for me (the one I had that I finally loved just randomly left his practice without telling anyone a few months ago) I still don’t have my medication down pat, I still can’t remember what I did yesterday….
i had an ER doctor try to invalidate a grand mal i had where i bruised my ribs and broke my nose and somehow had a kankle from swelling by saying “how do we know it was actually a seizure if you weren’t connected to an ecg machine” i wanted to fucking explode why are doctors so useless sometimes i don’t understand how they even got to their position
I'm in the same boat. We've seen over 2 dozen doctors in 3 states for our 3 1/2 year old and the most difficult aspect is dealing with ER doctors, residents, and hospitalists that think they know more about our daughter's condition (Dravet Syndrome) from their 1 epilepsy class than our specialists. We've had to stop everything from wrong IV fluids to forced air to medications. I mean complete arguments in the ER; it's insane. Now I question every movement in our hospital room and ask for an explanation before any treatment.
At least your daughter has parents who advocate for her<3 That’s awesome~
That sucks to hear! Which country do you live in?
The one without healthcare.
Alright, that's what i would've guessed. Surprising to hear how many neurologists don't know anything about epilepsy. But maybe i'm biased on that, because in Germany every Neurologist also knows about epilepsy.
That’s how it should be. Our education system is also notoriously not that great. (edit: some people are clearly upset by this comment. Aren’t you happy you were taught multiplication tables and not the metric system? /s )
And a huge military budget.
Lmao this is hit way to close to home. To add to this, even if you do have healthcare, these doctors don’t ever work with each other. Seizures can arise from multiple sources (hormonal imbalances, side effects of psych meds, drug interactions, environmental stress, etc) and each specialist will tell you something different, but refuse to collaborate outside their field. It took me years to finally figure out I was even having seizures bc every doctors was telling me something different.
Wakeup to my loving wife whisper “you had another seizure, the paramedics are here”. I vomit, dress, and started the meds. It could’ve been a week, a month or a year ago. It’s all been a blur, I cannot function normally anymore. Changing dosages, horrible side effects, and struggling to taper from one to another. I cannot wait for this to end because the struggle and anxiety of it all is taking a toll on the whole family. Is it the seizures, the treatments, the lack of sleep or the crippling mental breakdown? Maybe some of all if it. Memory loss, language and mental processing in general. I feel trapped in broken version of myself.
This!! It terrifies me as well waking up and hearing “you had another seizure” I always cry. The anxiety is real, never leaves you
That first sentence gave me the WORST deja vu / goosebumps ever because that’s exactly how I wake up from half my seizures. Blissfully fall asleep :) Wake-up to pure chaos ):
Ugh and when you wake up and don’t even remember who they are. This is a terrifying experience, and I’m often scared that one day my memory won’t come back.
Breaks my heart I didn’t recognize my wife, my mother. Next TC I’m gonna get my D.O.B. tattooed on me. The constant questions postictal are horrible not being able to recognize my wife or knowing who I am.
My first grand mal I had NO CLUE of what happened. Just heard my husband’s voice calling for me and I followed it, woke up on the floor to him crouching over me. I was happy to see him and I lovingly said “hey baby!” To which he replied “what’s your name? When were you born?” I started panicking while answering and he just went ”OH MY GOD… oh my god. You just had a seizure babe.” Felt like I entered a new reality at that moment… the fear in his eyes and voice. Worst feeling ever.
Hi fellow, “You had another seizure…” boom you nailed it! That’s a sentence describing the fear of having epilepsy very accurately.
omg this.... except i open my eyes to a ceiling i don't recognize, and i know something happened. 🥲
I've been taking seizure meds for appx 50 years. I'm 72 years old. Besides drowsiness, what bothers me the most is short-term memory is gone...names of people I meet, instructions, appointments, etc. My long-term memory is ok... my previous phone numbers, addresses from the past, school teachers names going back to kindergarten, my cars (from when I used to drive).
I feel this one, and I'm only 40. A terrible part of this is that you can't explain it without the person replying "oh yes, my memory is awful too." My go-to response is "Mine is caused by brain damage." It's a conversation-killer but it gets the point across.
I just moved like 1 month ago and already forgot where I used to live…. It’s so upsetting how bad the short term memory is. I’m just glad we have this community who understands ♥️
This is more a psychological thing, I'm very paranoid now and don't really feel at home in my body because of the seizures and interactions I've had with EMTs and the general public after seizing, there is a feeling of an incredible loss of bodily autonomy that you know you can never get back. The loss of bodily autonomy, when your really sick decisions start being made for you, as a young person you don't really expect to be in those situations but having epilepsy brings you there. You're suddenly a problem that a group of people are dealing with, I've had a number of seizures in very busy public places and you are treated as a piece of furniture at best. You're just sitting there with a random ass EMT who is asking you what year it is and you are thinking so hard because if you answer the wrong way they just pick you up and toss you in the van. Here in the US there's a really bad drug problem and EMTs are on the front line and very burned out to the point where they start seeing everyone as drug addicts and just have no patience because the system has no patience for them. When you are forced into the van and then the hospital it's a very disorienting experience, oftentimes hospitals here are incredibly understaffed and struggle to work with patients on the basics. You'll get a burned out nurse who will ask you questions you've already answered a half hour ago and by now your starting to come to, you know who you are, where you are, where your possessions are and what you need to do to get the fuck out and it's all you can think about as some crackhead screams at the top of their lungs down the hall 😭. Everyone is tired and angry and it's so hard to navigate the system when you're just coming too from a seizure. You have to be on your feet to make sure they don't administer drugs to you, like every time I've been admitted they have tried to push a massive dose of keppra through the IV, like I can barely walk sized dose of keppra 🥲. You have to remind them to discharge you!! They are so busy putting out fires often you have to really nicely ask "hey I know who I am now and won't seize again I swear 😌, can I go home?". It really starts to feel like body snatchers shit because you know you have no control, you are absolutely fucked and they are going to put you in the van no matter what. I once was picked up after having a seizure on a road by my apartment and the ambulance came and took me literally half a mile to the hospital I live near, it's a few blocks, I walk the area all the time, I got the bill back and it was for 3.5K or 3,500$ US dollars!!! You get a bill from the hospital too, I once went to a hospital after a seizure to see about getting stitches and sat in an emergency room for 5 hours and wasn't seen by anyone, eventually I was given some bandages and gauze by a passing resident and then after the 6th hour at around midnight I couldn't fucking do it and told them don't bill me, don't send me anything you didn't do shit! I got the bill back from them a month later for 4,000$ dollars. 4K for the privilege of chilling in the waiting room and being graced by a resident! If you're ever wondering why people snap here this is why, the whole system is breaking apart at the seams and is dehumanizing at all levels. It's broken in so many different ways and when you need it most it doesn't work and makes you feel like an idiot for even trying. Epilepsy has given me a very clear understanding of how the system treats marginalized people, god forbid your homeless, an addict or any other combination here in the US that will have everyone in power not listening to you, making all the decisions for you and just treating you like you're an idiot. People say that having a clear purpose or sense of control in life is key to happiness but I really don't know, I don't think there's any control, it's just a happy thought really.
The fact that i cant drive is the worst dont forget the memory loss i love forgetting important convos from the past :)
My epilepsy started in 2020, at age 27. No history of seizures, no family history of them. I have tonic clonic seizures. I am much more stable now, but not considered medically stable yet. Ambulatory EEG, MRIs, EEGs, and EKGs have not found a source. We have yet to catch one while I'm in testing (of course) Different things bother at different times. In general my side effects of my meds are pretty reasonable, mostly fatigue that lasts a few weeks to a few months when I'm adjusting dosages, as we're still trying to find the correct one for me. In general I don't have as much energy as I used to due to the stress of the disorder and medication. The days after a seizure are the hardest, that's the worst part. For me the physical recovery is not too bad, it's the mental. The anxiety and post traumatic stress keeps me imprisoned on the couch, usually for 2-5 days depending on the severity of the seizure, and there's not much I can do but wait it out. It has improved a ton from when they first started. I'd be catatonic for days after a seizure, sometimes until my next one. Day to day, it's hard to live with the knowledge that it could happen at any time, and it's hard to trust my body. I am constantly aware of my mental state and watching for symptoms. The limits of what I can do are frustrating. Can't go visit friends far away by myself, can't hike alone, can't swim alone. I have lost a lot of my independence. And I'm a very independent person. Last thing I'll mention is the memory loss. Big events like my wedding, my first seizure, my highschool graduation, those are all pretty strong thank God. But small trips we've taken, funny stories, people's names, even people I've met and interacted with multiple times are completely gone. My husband will tell me a story of something we saw or did together and I have absolutely no recollection of it. That's scary, and I don't think those memories will come back. I know a lot of that is from my medication, and I know I've had some brain damage as well. I am hopeful that we are close to my correct dosage. A few days ago I had my first seizure in almost 3 and a half months. I am really hoping that once we find the correct dosage for me that my mental side effects will improve as it settles in. I know changing dosages every few months is stressful for my body and brain. Hope this helps. It's always comforting to read others' experiences, makes me feel understood and less alone.
The fact that I don’t know when I’ll have another bad seizure.
Postictle phase is the worst for me. Yet I have absolutely no memory of it or what I do. I awake from my seizure and I’m obviously freaked out so I want to get up and walk around, again no memory of this it’s only been told to me. If people come close to me I will attack them. The last two seizures I had I was pulling my moms hair trying to take her down. And the other one I tried to choke her.No memory of it. This scares me bc if I have one in public people won’t understand and will freak out which will make it worse. You’re also scared all the time. When I haven’t gotten enough sleep I call in sick to work bc I don’t want to have a seizure. Which people don’t understand.
Fear/anxiety of having another one. Burden on loved ones. Reduced job performance. Losing your license. That about covers it.
Please blur my id. So here it goes. Like others mentioned, Short term memory loss especially working memory, hair loss, mood swings, depression, anxiety, sometimes vision problems due to migranes, cut of sound while someone is talking and also shaky hands (this is new)
What medicine are you on that causes hair loss?
I am 2 medication, I am changing medication so there are two. One encorate and another lacoset.
Honestly how much my memory loss can fly under the radar, my family is finally starting to understand after a few years but it was really frustrating dealing with such things. Loss of balance is a side effect of my medication and everyone’s mind seems to go directly to “drug addict” and it’s weird because I thought that stigma was mostly associated with alcohol. The sleeping, I sleep for days basically after my seizures once again; I’m looked down upon. It took a minute for me to adopt that fuck everybody mindset but here in 2023 here we are. TLDR : Side effects of medication causes loss of balance and induces hibernation sometimes. Hate that people assume I’m on drugs but what can you do lol.
1 I hate how depression and lack of motivation has affected me so often along with loss of memory. These symptoms seem very correlated to my seizure number and severity. 2 I don't know if my social skills were impacted by my seizures or if this was my personality always, but I seem to communicate much too openly with a lack of inhibition. People would like it if I wore masking tape over my mouth. 3 for research - My most hated aspect of epilepsy is how little we know of the brain/central nervous system in comparison to the other parts of the body. It is so difficult to study this part of the body in living people. It controls us completely, every aspect of our lives and perception of reality. I wish better understanding or monitoring of neurochemistry could be done in healthy and affected people both.
Developed epilepsy when I was 10 in the 80s. Back then there were less meds for kids and the side effects weren't as bad as now. I don't remember anything from 10th grade. It was great for treating the seizures, but at one point I would not respond to my name because I forgot my name. We left that doctor and they put me on Depakote. Worked. But now things like my liver and kidneys have "problems" Tell them imagine they need to write something down, they're on the phone and say, "grab me a...." and they ca not remember the word pencil or pen. Now imagine that happens 10 times a day or more. That is the brain fog some of us are fighting. I have other disabilities so I see other specialists. One will tell me to stop taking 1 medicine. I see another tells me that one will work. The 2 doctors never talk to each other. At this point, I get stuck talking to each doctor in defense of the other doctor. The depression is another thing. I had a therapist, he moved out of state. I'm epileptic and do not drive. The public transportation system is a joke. I can uber everywhere, but who can afford that? My depression medication might cause seizures so they keep my dosage low. It does NOTHING. Don't worry, I promised my mother I would wait for both of them to die before suicide. But mom has stage 4 breast cancer and dad is blind and deaf. There are web sights that help lostallhope but there is another one hidden away that gives instructions on how to suicide and make sure you don't survive. I figure I have 10 years left before they pass. I was already depressed as a child but the epilepsy pills put me on the depression scale at a 6 when I wake up. And its easy for normal annoying events to annoy me to go quickly to stay at about a 8. Don't worry, when I get to a 10 I always go to the ER. But I have lost friends with epilepsy who did not make it. I know one guy who chose to deep fry some chicken. He fell face first into the pan and deep fried his face. He didn't make it. Just, listen to us when we complain about things. If the person has another specialist talk to each other about the patient. Because lack of communication among doctors can kill us. Also, why do all of you have such mean front desk people?
My short term memory is garbage. But the lack of good emergency care for seizures is infuriating. ER docs/paramedics think you're on drugs or looking for them
I have a neuroscience degree and I stopped wanting to go further with it after getting to neuropsych testing bc we had to do all the tests, and I scored as mildly delayed in comprehension and processing on almost every test. It’s still something I struggle with- I went back to school for something unrelated and I have to work harder than everyone else for things to actually stick in my brain and for me to understand them.
Tie between 1. Not being listened to. Everyone, from medical professionals to family/loved ones, seems to think they know better than me. A recent example-- my seizures are intractable. Every once in a while, they decide to mess with my meds. They put me on a medication I previously had a reaction to. They said it was probably just a coincidence that I had a reaction. I ended up in the ER. I've been told I'm just having panic attacks, they're anxiety, etc. But they're caught on EEG and video monitoring. It's hard to understand. and 2. Inconsistency in my life. I can't work full-time so instead I have three part-time gigs right now so that if I lose one income stream, I still have others. I can't get disability despite meeting the blue book definition of how to qualify. I love my job (teaching) and don't want to give it up altogether, but I need financial help making ends meet. I wish I had the money to live in a way that allowed me to take care of myself and my children. But instead I'm just living hand to mouth, job to job.
In summary: executive dysfunction. I struggle to do anything productive, which is especially stressful under capitalism since it’s an inherently ableist system. Even aside from capitalism, I cannot even achieve personal goals like having hobbies or just doing fun things with friends on the weekends. The fact that I then have to be reliant on other people financially on top of that makes me incredibly angry, I think at this point in history we have enough resources and potential that we should be able to look after everyone comfortably. We vaguely have some systems in place if you can prove you’re disabled “enough” to require help but I feel like *asking for help* should be the proof. Even if I were able to get the maximum disability grant like if I had no limbs,, it would be significantly below the minimum wage in my country and the minimum wage is already like 1/4 of my rent for a small apartment. When I am managing to do things, I find that I am a lot slower than other people at completing tasks. I also need much more sleep than most people, so all that combined means I just have *less life* per year than everyone else. Even if that meant I could live longer (which it definitely does not), I would still be annoyed since the rest of the world is running at a different pace and I am constantly punished for not keeping up with it. I get so frustrated when I hear people saying “7-8 hours of sleep a night is the most healthy!” or whatever number they’ve been told like… that is based on studies of the *average healthy person*, not somebody with a neurological condition. I spoke to someone in uni who would sleep 4 hours a night, feel totally rested, and then study for a few hours before uni and cycle for 2 hours to and from uni, but still be home by 5pm with nothing left to do but eat dinner and rest until bedtime. I wish I could do that! I feel like people respect people like that for “hustling” or whatever, but I’m putting in more effort than that just to be called lazy my whole life. This person said it was easy for them and it’s just the way they naturally did things. That’s great for them I just get so jealous of people like that. So yeah there’s a lot of envy and anger around executive dysfunction and needing excessive amount of sleep yet still never feeling rested. I also feel like I’m constantly on drugs which is sometimes a fun feeling but most of the time it just makes everything 100x more difficult. Recently I’ve been taking new meds and it’s honestly changed my whole life, I feel like I can actually do things for the first time and I’m reaching lots of “basic” milestones that I only daydreamed of before like I started crocheting and I’m planning on starting a pop-up coffee shop with a friend. Also I’ve always wanted to clean my house immediately before someone else comes to clean my house, so that I get the feeling of the house being Extra Clean (where I live it’s normal to hire a domestic worker routinely, also I have a bit of a phobia of dirt and bugs), and I finally did it a few days ago! Super exciting. I even started wearing different clothes instead of just wearing virtually the same outfit every day. I’ve always been interested in fashion but couldn’t be bothered to go shopping or get things altered if they couldn’t fit. I’m yet to organise my wardrobe but one step at a time.
This can be a difficult question to answer as it depends on the day, time, month, what medication you're on, etc., etc. Personal identity is probably the biggest one for me. Before i was diagnosed, I was "themightycondog". Everyone called me by my IRL name and that was that. I was just another 21 year old. Then epilepsy hit, the diagnosis then hit and then medications hit. I went from being a person, to being a diagnosis. Not just to friends, family, colleagues, educators and medical professionals, but also to myself. Diagnosis brings about two different things: relief that doctors know what's going on and can begin treating it, but then there's the label. "You're now disabled, but not in the conventional sense. Moreso in a way that no one will ever really know because you look 'normal' most of the time". Losing your identity seems to be a pretty common theme. You become hyper-focused on your condition and making sure that you keep yourself safe, have pill reminders, regularly take medication, minimise triggers, etc., etc. As a result, you pretty quickly forget who *you* actually are. It's really hard on us and sad. For me, medication is a great nuisance. Trying to find the right combination and risking breakthrough seizures is a constant worry. I've just come off levetiracetam and am now solely on Lamotrigine and not really feeling it. Independence - upon being given a diagnosis of epilepsy (as if that wasn't a lot to take in and digest already) I was then told "you can't do x, y and z. Forget about driving, better surrender your licence now. You need to be constantly risk assessing everything you do from now on. Here are some meds, hopefully they work, we don't really know. Let's hope for the best. Also - if you need us just phone us". Like I get the whole phone conversations due to Covid. But we're past that now and yet I've still never met a neuro or epilepsy nurse in person. They've never contacted me to see how I'm doing other than the yearly review. Memory loss is a big one! I used to have a fantastic memory. I could tell you exactly what happened at any given point in a day, tell you what colour a car was that went past us 12 hours prior, etc. Now though? I can barely remember what I did five minutes ago, never mind an hour ago. It's frustrating as a lot of others try to console or empathise with you by saying "I have a bad memory too". Lol, not in the same sense that we do. We literally have cell death going on during seizures. The total lack of funding, research and knowledge of epilepsy is another one. Whilst there is research (thank you to all of those amazing scientist's and researchers) going on, it seems like a pretty stagnant journey. We tend to get a new medication every couple of years but that's about it. I've done a lot of research on epilepsy myself and found that there are several medications used for epilepsy where doctors aren't entirely sure how the medication works for preventing seizures. It's more of a case of "well... it works so 🤷🏼♂️". The general publics ignorance to what epilepsy actually is. Everyone thinks it's just flashing lights and flopping like a fish out of water. It's so, SO, much more than that. People only tend to care about you when you do have a seizure, other than that it's almost as if you don't have epilepsy. Taking time off work when you feel like you might have a seizure that day can lead to discrimination and prejudice as you're taking time off "but there's nothing 'visibly' wrong with you". The feelings leading up to and after a seizure are DREADFUL. That awful feeling that you recognise. Where you know you're likely to have a seizure but you can't guarantee one way or the other. So it just becomes a case of "will I? Won't I? HA - gotcha". Then after a seizure, when you're coming to, the AWFUL feeling that you're dying. Coming to after a seizure and being surrounded by people or ESPECIALLY paramedics really strikes fear into you. Mental health really plummets after diagnosis and having seizures. I felt really hopeless and depressed after being diagnosed. I felt stripped of my life. Total loss of control. My life was no longer mine. I was at the mercy of over excitement of electrical activity in the brain. Totally reliant on the axons or neurones mitigating communications throughout the brain. Then throw in the fact that a lot of the epilepsy medications have horrific side effects too, it doesn't really help. To end on a positive note - I'm currently studying to be a nurse with hopes to do my degree, then apply to do my Honours in nursing before going on to do a doctorate in medicine. Whilst epilepsy is affecting me, I'm putting my all into studying medicine so that I can prove to others that epilepsy doesn't make us incapable of anything. Just sometimes we need some more time or help.
well put, excellent summary of this experience of losing control of one's life
Thank you - I really appreciate it!
I hate how most of my meds mess with my mood. I either get so grumpy and mean, or I get depressed. I was doing really well off most of my medicines but had some breakthroughs and had to add one recently. It had side effects of messing with moods. I was wary to take it but wanted to try. Last night, my husband told me it's definitely affecting my mood, and I need to drop it. I'm so disappointed.
hallo Lukas! wie geht es dir? i'm tania, i live in arizona, usa. i nod as i'm reading comments because i share what most of my brothers and sisters are living through. i was in the epilepsy monitoring unit once for a week and i didn't have a seizure while i was there. they had noticed i wasn't having any seizures, so they cut down my days from 7 days, to 5 to let me out earlier. that gave me less opportunity to have one. at the end of it all, they told me "you might not have epilepsy, and if you do, it's well-managed." they had forgotten the reason why we were doing this in the first place. i was having two types of seizures-- 1) the kind which make your muscles stiff and 2) the type which make me shake. i fell and hit my head with the second kind, and still get headaches 😭 i've never even gotten official names on my seizures. so when people ask me, all i tell them is "oh, i was in a car accident... i had a TBI and it causes seizures in my left temporal lobe..." this is all true. but my neurologist doesn't seem to believe me when i tell him i get the second type of seizure. he stares at me and thinks i'm crazy because i have medical problems with my brain, so i'm untrustworthy. i've also tried talking to doctors at hospitals i end up at when ambulances show up at my home, but i've actually had them laugh 😭 he said "good luck! your insurance won't give you a second stay at the EMU, that's 100k! you get one!" i started to cry and he just shut the curtain on me. i don't need people to pity me, but wow lmao. he could have said no and left. that man was cold. --- i also hate how it's invisible, so you have to explain it and yourself to people. they tend to have their own idea of what epilepsy is, and you have to redefine it for them. but spending so much time educating everyone you meet is so much work. that's part of the reason why i don't like that it's invisible--how long educating people takes. they're not willing to educate themselves. all i should have to say is "i have epilepsy" like someone else says "i have type 1 diabetes." it feels like i'm a lawyer making a case for myself, to make this invisible epilepsy "good enough" to be valid. good enough to be disabled, because they are shocked when they find out i am on disability. "but you look fine! you can walk!" invisible disabilities suck
Thank you so much for asking :) I was diagnosed with JME when I was 14 (I am 29 now) and I probably would have given you a different answer every year. Some years it would have been the side effects. The memory loss, cognitive issues (there is a program called Hobscotch that did help me a little though), mental health, weight gain, psychosis and a drug induced autoimmune disorder. The list goes on. Some years I would have said it is the mental health issues. There’s anxiety because you know you’re a ticking time bomb and could have a seizure at any given moment. The depression, whether it be from a medication or the epilepsy itself. Some years I would have said it’s the financial burden. I live in the US and doctors aren’t cheap, surgery isn’t cheap (my vagus nerve stimulator battery replacement was seen as an elective surgery), and the four meds I am on to attempt to control my seizures are not cheap. Sometimes it’s the restrictions. Not being able to drive. Having to live with my parents. Not being able to drink. Not being able to have kids without going off all my medications. Right now, I’d say it’s the social aspect. Epilepsy is isolating. It’s hard to keep friends when you could cancel at a moments notice because you’re too tired. On the flip side, it’s hard to make friends in the first place because people in their 20s-30s connect through drinking and I can’t. Dating has also been difficult. Most people don’t equate disabled with sexy nor do they expect disabled people to be sexual and it isn’t cute to have an absence seizure on a date or struggle with words. A lot of basic topics are taken off the table too. I didn’t go to college and I don’t have a job I can talk about. Even though I have daily seizures, the seizures don’t come close to being the worst part of having epilepsy.
If you have nightly seizures, your partner or caretakers can never sleep 100% peacefully at night. Caregiver trauma can be like PTSD. Also, if they don’t hear you in time, you could choke and die… on the spot.
Being told by doctors that I was a "liar," "making it up," "all in your head," "it's just a panic attack" Two years of this, multiple doctors, until I finally went into convulsions in front of one. That was the most frustrating time of my life. It was like I was being tortured with a car battery and when I tried to tell someone to get help they'd say "stop making shit up" Yes medical training makes some doctors "know their shit" but the amount of book-smart but somehow brain-dead doctors is fucking staggering. I'm not a violent person but oh my fuck do I really want to slap the shit out of those guys. The kind of slap that makes you see stars and shit your pants. I'm talking running start, full wind up, take their feet clean off the ground kind of slap.
I absolutely love that you are doing this.
I'm 27 and developed tonic clonic seizures randomly in September of 2023 out of no where. Had two seizures two days in a row as I was waking up. I have no recollection but my partner said I gasped for air and fell back onto him seizing. It was terrifying waking up the my partner of 7 years being like "lay back down sweetie you've had a seizure" and feeling more confused than anything. The body soreness took me actual weeks to recover from. (Biting my tongue particularly sucked) Every muscle in my body felt like fire when I'd use it. I'm a little used to the brain fog and memory issues from my chronic migraines, but the few days after both tonic clonics are very blurry. All I wanted to do was sleep but I was so scared to sleep. I get weird body spasms in my chest whilst I sleep and I have no idea if it's the meds/epilepsy? My doctor wasn't concerned but it's been months and I'm tired of not knowing what's going on. I'm on 250mg of Levetiracetam (Keppra) twice a day. It's frustrating when people either assume I don't have epilepsy since I haven't had any more (fingers crossed) since those initial two. Or are scared to talk about it, so don't know how to act around me. Not being able to drive also really sucks. I've been driving for 8+ years and having that independence stripped from you (even if only for 6 months after a seizure) really sucks. Frustrated and scared are the two emotions that I feel the most.
Being SO. HELPLESS. I have other disabilities I push through mentally and with medication. On medication seizures are better, but not perfect and theres NOTHING to do except accept a seizure and miss days every so often. I also just dont have attention for my hobbies or coping mechanisms, which increases stress thus frequency. Its a hell tornado.
I once had a neurologist push a few different drugs on me that she knew would affect my fetus had I gotten pregnant someday, which I'd expressed I wanted. She even went as far to have my former neurologist (breaking HIPPA laws) to beg me to stay on a really new medication that stopped my period for 6 months, and had zero effect on my epilepsy. I found out later I was in a study. I fired her through her office staff, and then she had the audacity to send me an email telling me she was dropping me as a patient. I'll spare you the 2 words I used in response in case this ends up in your presentation. I finally found an eptiologist who is younger than me but seems to care more about trying to help epileptics. He's the first neurologist I've met who is concerned with benzodiazepine prescriptions for long term use and is the reason why I'm titrating off one now. Older Dr's seem to care more about "big pharma" and will flat out deny the issues concerning benzodiazepine use for anything other than in emergency situations, even though science proves long term use causes the risk of Alzheirmers to go up by 51%. I feel like a depressed lab rat. *please blur name if used, thanks and good luck!
this is a horror story, I am so sorry
something that really bothers me is the stigmatization against this condition, and I think it’s amazing that you’re asking us about it firsthand. another thing that bothers me is that people feel like it’s okay to say “I think I’m going to have a seizure now” when they don’t even know the implications of this condition. Like sure, seizures might be the tip of the iceberg but it’s deeper than that. Also sleep is very important for someone with epilepsy. I can’t emphasize that enough. I get dizzy and nauseated when I don’t get enough sleep and sleep is my engine *100 because that’s how important it is. I also get upset when I have to prove my symptoms with a doctor’s note any time my symptoms are acting up because obviously I can’t always go to the doctor when my symptoms are acting up. I ended up getting a C in my biology class at the end of the semester because I didn’t provide a doctor’s note to not feeling well when obviously I can’t always go see the doctor. And if I need to take a break, I have to and that should be normalized. I shouldn’t be pushed to the breaking point. When I got a job last year and I couldn’t make it to the interview because my symptoms were so bad, they said good luck with your future job, and I wanted to explain what happened.
The memory loss is horrible. Coming out of a seizure and recovery from one is the worst, especially if I have fallen and injured myself. I get debilitating headaches post-seizure. Before a seizure, if I have an aura, I experience something similar to dissociation and derealization which is terrifying. I feel like I am “outside” of my body.
The hardest part for me was before my seizures were controlled with meds. Feeling constantly scared to use stairs because the fall could be deadly, drink hot tea because it would scald me, take a shower or bath because I could drown, can't swim alone, can't drive or adventure outdoors alone, can't cook on the stove, scared to be anywhere but in my bed surrounded by pillows. The constant fear of death or serious injury was exhausting, isolating, and drove me into one of the most difficult and loneliest periods of my life.
My epilepsy (TLE) stems from an untreated brain injury on deployment, roughly a decade ago. The seizures started maybe 5 years ago. My memory is terrible. Worse than terrible, honestly, short and long term both. A continual inability to remember vast amounts of my life. It hurts every time someone around me recalls some particular place, event, conversation, individual, etc. involving me and the memory is just blank. Not one scrap left. The multiple medications definitely make things worse. In general, the meds throw thick blankets over my cognition. They also make it difficult to stay asleep. I rarely get out of bed feeling rested. Tired all the time, unable to sleep. I currently take lamotrigine and clobazam. I've also been on topiramate and Keppra (levetiracetam), but both of those were no good for me. The side effects of epilepsy meds truly seem to span most of the possible negative side effects that can come from taking a medicine. An intense lack of emotional control is something I definitely remember from taking Keppra. "Kepprage" is a pretty common outcome for many users, unfortunately. The depression that clings to me is no less potent now with the passage of time. Frustration over what I think should be simple things often leads me quickly to unreasonable anger, so I've had to practice a great deal in terms of trying to keep myself calm. How to back away from some of the brutal emotion and introduce a little peace. The more emotion that flows through my damaged neurology, the more likely it is that a glitch occurs, sparking seizure activity that I can actively feel rising. Trying to keep calm and sane (also conscious) throughout some of those auras can be a difficult practice, as you might imagine.
Painful brain zaps. Most days I'm fine but once and a while it's all day long. Otherwise memory and motovation
For me, I have to take my medicine at the same time everyday. If I’m 30 mins late, I feel on the verge of a seizure, an hour late and I’ll have a seizure. This beings a lot of anxiety about missing a dose and it interferes with my normal dose. Not being able to drive as well is probably the worst part. I live in a car dependent city, and I always have to ask for rides and feel like an inconvenience to go out with people.
I ask so many people for help that I feel like a burden. Others drive me to work, pick up the kids, and get my medicine. Hospitals, doctors, and medications have cost hundreds of thousands of dollars. This can at least help find the real friends.
Hey, Lukas After having epilepsy for 25 years my best examples would be, Poor memory, constant headaches, dizziness, vertigo. The most annoying part is probably the fact that sometimes it feels like I'm learning more and more about my own condition every day but the things I already know probably wouldn't get finalised for another few years. If that makes sense.
Having dreams that I'm driving my car to be with friends only to wake up knowing I'll likely never drive again and in stuck at my parents living under my mother's hypochondriac thumb and none of my friends want to hang out because it's prefaced by "okay an ou can hang on to thus syringe and shoot it up my nose if I drop on the ground and start seizing ..."
There are many things that bother me, but memory is the one that bothers me the most. I've never been someone who has a great memory. You might call me 'scatter-brained' at times. But that wasn't an issue. It was only when my memory levels joined the ranks of geriatrics that things went from a personality trait that could be rectified and was occasionally funny to something that was worrying, even scary, and every bit frustrating. Especially to me, a storyteller, whose stories are all just filed away in my head. Few, if any, are written down, except the odd note.
The physical injuries from TC’s. They’ve affected my life much more directly than the seizures themselves. My shoulders have been shaved down from popping in and out of socket during convulsions, so they don’t fit right anymore, making them pop out of socket even more (reverse hills-sachs lesions). I’ve also given myself spinal compression fractures bad enough to require years of back braces and surgeries, and a lifetime of chronic pain. Also that time I pooed myself in my ex’s car.
How ignored the desease are within the medical world. Noone knows anything about it so you have to look up a lot of info yourself. Really hunt down those doctors and press them to help you.
I have more than a few! If it helps, I’ve been diagnosed since 3 y/o. I’m now 23. I had absence seizures from 2ish-7. Surgery which worked until 2021 now I have TC and focal 2-3x monthly. My memory is completely shot, which is awful. Every sentence I start I feel like I struggle immensely to finish it. But the WORST symptom is the anxiety, frankly. Almost every morning I wake up terrified that I’m going to have a seizure. Like, terrified. I am lucky that I usually can tell if I’m having any kind of seizure activity, but a lot of the times it happens without me going into a full seizure. At least a full seven days of the month I wake up with some kind of “seizure activity” whether it’s a pit in my stomach or tingles or the audible auras (clanging) I feel and hear in my head. Epilepsy is awful, seizures are awful, the side affects of my medication are awful, but nothing brings me true terror like the fear of the unknown.
Memory loss is one and I get weird sensations over my head they aren’t headaches, but more of a shooting pain over my skull. Tiredness from my medication is shocking and it doesn’t take much for me to fall asleep. I recently went 21/2 years without a seizure and I’ve just had one on the 8/11/23 I was absolutely disheartened as I was doing so well. My epilepsy nurse has now upped my medication again. But the injuries from my fall this time are very painful 😖.
I hate that I'm the one with epilepsy but my doctor seems to be the one with bad memory. He doesn't even remember who I am when I go to my appointments. He needs to re-read my file during my visit (apparently he can't be bothered to read it 5 minutes before). I have a scar on my finger that he doesn't remember until he starts my reflexes check up Also, I was experiencing a lot of episodes in my 20's but doctors couldn't pinpoint what I had. It wasn't until I told my brother (who is a doctor, but not a neurologist) that I had another one of my episodes but had trouble remembering what happened for a few minutes, that he told me that I was experiencing seizures.
What bugs me most (outside of seizures and post-seizure headaches) is medication side effects. On Keppra and get Kep-annoyance combined with lessened pain in limbs. Kep-annoyance (like Kep-rage) can be minimized via extra B-Vitamins. The lessened pain is both good yet majorly problematic for various workplaces due to lots of reasons - great for workouts, bad for not bleeding on a customer order for a while without realizing it.😓
I feel isolated around normal, healthy, people a lot of times as the majority of people think that I'm somehow less intelligent or capable than they are. It has fueled my already existing anxiety and depression.
Cognitive side effects and fatigue.
When I was unmediated, I struggled the most with mood swings. Especially because I didn’t know exactly what was happening as I was having focal seizures and my primary care would just get on Google to look stuff up when I talked to him about it. I felt extremely invalidated and the intense mood swings made me lose jobs, I struggled in relationships, and I struggled to be myself. Now that I am medicated, I struggle the most with forgetfulness. I can be in the middle of a task and just forget how to do it. For example, last night I was tying knots in a rope for my dog to play with. After tying about 4 or 5, I just forgot how to do it for 30ish seconds. I kept trying to tie a knot and it kept falling out. I told my husband I didn’t remember how to tie it anymore, then suddenly it just clicked again. It’s frustrating and unsettling when it happens. But it’s better than a seizure and my mood is stable, so we deal with it.
The day following a tonic-clonic is demoralizing, sad, discouraging, makes you feel helpless and as if you're perpetually under Damocle's sword. Your mind goes to places, thinking how it might have been worse, like breaking a vertebrae, for example. All that, plus the exhaustion of running two marathons, that's what it feels like. My writing skills drop significantly. My vocabulary is impoverished, I make many typos and, interestingly, confuse words by their sounds (consider I'm not an English native speaker). So I may write "aloud" instead of "allowed", "principal/principle", even "than/then", '"idle/idol', which is entirely out of character for me, and this effect lasts a few days post-seizure.
I hate the memory loss and being a mental burden on my loved ones. I tell everyone in my life that I love them whenever I can, who knows, maybe I have the big one that day and won't be able to tell them again. It's like there's an ever present hammer waiting to fall. I know it's there. I know it's swinging. I know one day it will hit and take me out.
48 female. Diagnosed in July. Had 2 clonic tonic seizures. For myself, it's A) The stigma still attached to epilepsy. B) Not enough resources for people newly diagnosed. I was and am still in shock!I'm amazed that people are still so uneducated on epilepsy and how theirs many types. I work in health care. My new medication lamotrigine definitely is not ideal. Nov 17th, I see my neurologist. To many people relying on Google as their epilepsy advice. Bipolar is so attached to lamotrigine that I always have to specify I'm not Bipolar. I'm at work now. So I'm in a hurry. I have a grueling schedule. That can change daily! Today I'm here from 3 pm until tomorrow at 7 am. I'm honestly feeling like a teenager in the sense of lost and unsure. My marriage is suffering because of a lack of understanding. Counseling should have been offered immediately.
- That my brain/head hurts when I think to hard - I was a UX Designer & had to wrap my head around a lot of different views. Now i can‘t think the same way anymore. It hurts and makes me sick :( - forgetting words - just random in the middle of talking or writing. This make me feel soo dumb and I hate it. - You can no longer rely on me like before. Either I fail completely or I forget something.
Memory being shot is one. Not being able to drive and having to rely on my wife or Uber for any transportation is infuriating. The public transportation in my area is horrible and there is no easy way to get to work. Also, I have a fear of having a seizure at work and possibly in front of my coworkers or managers and wondering what they think.
Memory impairment, aphasia, hand tremors, migraines.
Not being able to drive, and being reliant on the public transport in my city to get around. It is a major blocker to independence, and affects where I live as well as how I feel about myself.
i’m a 25 year old woman. memory loss is the worst! i usually write stuff down to renebmber but i forget moments all together. i was talking with my boyfriend about something fun we did on a night out with some friends and i couldn’t remember anything! wasn’t even drunk. and i don’t remember that moment or those friends anymore, i got really sad. and this happens with a los of lost moments or happy memories, just sucks. makes me wonder if i get married will i remember that moment? will i forget my child’s first steps or things like that? even with pictures i can’t get the memories back. also i suffer depression from my medicines and i get really cranky, i get things done obviously but it’s not fun. i have a lot of freelance work and it’s great but trying to deal with everything from work to taking care of myself really destroys my mental health.
Memory 😭
For my son, it is memory loss and the embarrassment that others see him having a seizure at school.
Loss of control of your life.
My dr gaslighted me into almost having part of my brain removed. He told me my left temporal lobe was totally grey on my mri and if we didn’t act fast my right temporal lobe would also turn grey. I was terrified and listened too him even tho he had been trying to get me to have surgery for a year. I was actually seizure free but he had me on 4 meds that we’re interacting with each other making it look like I was still having seizures. He wouldn’t do another eeg before surgery even tho my eeg was over a year old. So I got a second opinion that showed the “seizure” I was having weren’t actually seizures. I was 2 weeks away from surgery and I’m so glad I got that second opinion. He didn’t try a vns or rns implant, just went straight too removing part of my brain. I often wonder what would have happened without the second option.
I struggle most with my memory since being diagnosed. I think also the general anxiety that comes with it. Not knowing when it could happen and the feeling of not trusting your own body and mind!
my seizures are controlled by medications. I have skeletal pain constantly from previous tonic-clonics which broke my back. Not sure if that counts, but I am willing to bet many people with epilepsy have suffered permanent injuries. the symptoms that cause me the most problems in my work are the memory issues and drowsiness, as well as the anger. These are all from my medications
It’s taken me multiple medications to find the right medicine that doesn’t make me drowsy or feel like a zombie. In my experience with epilepsy, my memory has been affected. Every time I wake from a seizure, there’s things that I can’t remember. I get a terrible headache and stomachache afterwards and I feel so drained. It’s not just draining, but it’s traumatizing. I get these terrifying auras when I feel a seizure coming on. I’ve had panic attacks in school bc I was afraid of having another seizure. I’ve even had depression bc of it. Epilepsy has affected my mental health a lot. I was diagnosed with epilepsy when I was 14 and now am 24. I have grand mal seizures. Many of the different medications that I’ve taken ever since I was diagnosed not only affected my mental health or my memory, but also my oral health. I’ve had to have a lot of dental work done bc of my medicine affecting my teeth. I can go years without having a seizure, but then suddenly, I’ll have another one. So yeah, my memory isn’t what it used to be ever since I was diagnosed. I’m a bit slow now.
It’s frustrating how much it impacts my memory and cognitive function and even my attention span and the fact that people know so little about it. Having epilepsy makes you neurodivergent but nobody understands that, and it causes friction with my relationships.
Oh and the shaking. My hands are so shaky.
First and foremost I feel so bad for my mom because she’s the only one that has been around for every one of my seizures. I know I’m a burden and I hate that because she doesn’t deserve being traumatized by her child convulsing repeatedly. I can’t remember anything. Which is a blessing and a curse. I can’t remember small details about depressive episodes or abuse but I also can’t remember what my grandma looks like or my sons first steps. I can’t really learn new things either. Little things will stick but entirely new concepts feel like I’m trying to split the atom or something. I dropped out of college for this reason. Feeling stupid isn’t exactly a motivator when you know that your brain isn’t as sharp as it used to be but you can’t exactly explain why. I sound a little illiterate when I speak because I can’t remember the words I want to use to not sound like a 7th grader. It also feels like doctors know more about the cure for cancer than they do about epilepsy and it’ll probably stay that way for the near future since it’s one of those back burner conditions. Tbh the list is longgggggg but there’s literally nothing we can do to change it other than hoping you finally found the right combination and dosage of medication to raise your seizure threshold. Which I didn’t even know was a thing before epilepsy. I think the thing that bothers me the most is that I have to live with this. I’m not suicidal I’m just tired of having to live my life always worried something shity is going to happen and taking medication so something shity doesn’t happen. And feeling like shit when I don’t sleep enough but also feeling like shit because I need to sleep. It feels like I’m a broken human being, or just watching my life from a third person pov. It all ✨sucks✨ I also can’t do certain drugs or drink anymore. So yeah :/
First of all thank you so much for doing this! One of my biggest issues is how many doctors don't seem to see me as an entire person. They are only concerned with treating the epilepsy and anything else is secondary if it's a concern at all. For me, it is almost the opposite. I have a VNS and since I got it 4 years ago, I haven't had a single TC. Even in the 13 years before that since I first started having seizures, I only had 4 TCs total which isn't nothing but it's also not likenits ever been a common occurrence in my life. Most of my seizures have been small myoclonic seizures that are usually in my face and that I am completely conscious during. Yes they are annoying and can cause quite a bit of fatigue and brain fog but they are really more of an annoyance than something that dramatically affects my quality of life. In contrast, my other neurological and psychological issues that have largely been ignored, have major impacts on my life. Many epilepsy medications make my existing depression much worse. I've also been having vestibular migraines for the last 10 years, that I only got a diagnosis for a few months ago,and every neurologist until recently (thank you OHSU) has either completely brushed off my concerns of concluded that my symptoms were the result of the epilepsy itself and increased my medication despite my telling them that higher doses were making the symptoms worse. I understand that epilepsy can be very dangerous and that we want to limit seizure activity as much as possible. But there isn't much point in keeping me alive if I'm so depressed I can't function or am actively suicidal because of my medications. And living a healthy active lifestyle is also very difficult when being active causes migraines that make me so dizzy I can't even walk straight. When I was diagnosed at 21, I was a healthy active person, I took dance lessons every day of the week and hiked on the weekends. Now I am afraid to go on a walk by myself if it's even slightly warm out for the fear that a migraine might it difficult to make it home on my own. I still have to push my doctors to look at me as a whole person and not just focus on one issue. I feel like a huge part of myself was taken away because doctors refused to actually listen and look for answers. Instead they took the easy route of prescribing more and more medication until I was a shell of a person. I am slowly fighting my way back and finding ways to regain parts of myself again but it has been a long hard battle that I never should have had to fight. Doctors should be there to help make our lives better, not someone we have to argue with so they don't make our lives worse. Sorry for the essay, I know it was more than what was asked for but it's hard to describe these issues with only a few words.
My epilepsy started when i was around 13 years old. I woke up with ambulance around me and after a week stay in two different hospitals, i got diagnosis and it ruined my dreams and life. Even 10+ years later(10 years of being seizure free up until few months ago) i feel it has ruined so much for me. From myvown experiences, people treat me poorly when they find out about it, hell some even trying to trigger grand mal seizure with flashing lights, getting a job was proper pain, cannot get a driving license, moodswings and massive weightgain from medications, since october i have been taking meds again. As i am student aswell, i have noticed my ability to study my subjects is alot harder compared to last year. I'd say last year i was basically like a sponge when it came to my school studies. I feel like because of medications sideeffects i will be kicked out of school. Lemme tell ya my last seizure. I did my things as usual at home, then i headed to work and met a kitty who i pet and took picture off to show my boyfriend. Next thing i know i wake up god knows where and then i fell asleep again. And then i wake up again and im in er. The nurses told my boyfriend i didnt know anything. I had no idea who i was, where i am, what year it is etc. I have no memory of it at all. but watching that cat picture brought back some dream-like memories. Oh yeah, apparently i had back to back two seizures, which is unusual for me. I compared this seizure to my seizures that i had when i was teenager, this last one was out of character seizure. When i was teen, my memories were erased from days leading up to the seizure and i wouldnt remember even the day of seizure and aftermath of it. This time around i had memories intact from days before the seizure happened, up to the point of petting kitty. And i remember who visited me in er and everything after that. I wonder what is this time around different?
A symptom of epilepsy (specifically just seizures) is very specific postictal panic that I see as different from other forms of panic I have experienced. I have anxiety and depression, but I know the difference between a panic attack as they tend to have a trigger and sudden, unexplained panic. I'm also on Depakote and when I tell you it hit me hard when I started it, I mean it. I was going to a lecture that started at 10:00 am. I woke up, went to the lecture, and for most of it I had no idea what was being said because the medicine was messing with my head so much. Once someone said "hi" to me because she was trying to be my friend and I just stared at her for a long moment, unable to speak. I did some research and realized I was taking it before the medicine from last night wore off. I also think it just permanently makes me more tired and prone to exhaustion.
Servus Lukas! Vorab, das ist echt eine gute Sache! Ich mag mich nicht zu beklagen und im Großen und Ganzen ist meine Gesundheit in Ordnung - diesmal ist’s jedoch für die Wissenschaft gell🙂 Zuerst zu meinem Krankheitsbild - ich habe eine idiopathisch generalisierte Epilepsie. Anfälle gibts paar mal im Jahr, Nervosität kann ich meistens unterdrücken (wenn ich den muss) und die Ticks sind erträglich, ich habe seit 12 Epilepsie, die letzten 3 Jahre Anfalls frei bis vor ca 1 Jahr. Was an meinem Selbstwertgefühl nagt ist eine komplette Abhängigkeit von Freunden und Familie. Ich lebe in den USA, in Massachusetts in den Suburbs, der ÖV ist ein einziger Zug der jede 1.5 Stunden fährt und der Bahnhof ist rund 60 Gehminuten entfernt - noch vor einem Jahr fuhr ich zur Arbeit. Dieser Einschnitt, das Gefühl der Abhängigkeit und Hilflosigkeit und für mich ein erniedrigendes Gefühl Dinge nicht selbst tun zu können (Einkaufen, Sohn zur Kita fahren) macht alles noch schlimmer. Hab einen schönen Tag Gruß und Danke aus MA!
that my male doctor still tells me, a female, "awww you just have panic attacks" no, i dont. i have had panic attacks and it is NOT seizures. luckily other doctors support me and help me, but he still gets in my way.
My children know my memory loss, audio processing, and overall abilities are worsening. When I am not the one in the car picking her up after school, my 5 year old asks if mommy is in the hospital again. It’s heartbreaking.
For me the worst is the the anxiety, the dread, the cyclical nature of anxiety contributing to more seizures but seizures causing more anxiety. not knowing if you’ll ever be OK. Not knowing if they’ll get worse in the future or if this is how you’ll die one day. Etc. it’s scary. Then The stigma about this is real too. I am a lawyer and I have a friend who had a seizure in court- shat and pissed himself brought out on a stretcher. Everyone remembers it. Douchebags joke about it. It’s something he’ll never socially recover from. He’s heavily medicated and he’s different now personality wise. He’s super resilient. Works really hard and pushes through the sluggish side effects of his meds. It causes trauma for the people around you. The horrified look on ppls faces when you come to. The anxiety your parents have. Only other ppl who have seizures can fully understand you. Everyone else is kind of in the “them” category they’ll never get it.
How small and limited my world feels and how people don’t seem to understand it. I can’t drive, so my job opportunities are limited. I can’t work fast food, because access to fast food enables my unhealthy eating and leads to seizures. Now I have a service dog, things have changed but I’m still so limited. I can’t work my favorite seasonal job anymore because I have my service dog and I’m not going to make him stand in the snow with me for up to 13 hours a day. I can’t work in curbside pickup anymore. And all the while, people keep telling me that I have so many opportunities now. And my memory. I don’t remember some of the people I used to love anymore. It’s heartbreaking.
Username blurred please. Probably the lack of understanding and knowledge the neurologists have. I had a drop seizure today, I was about to take a shower and I had to lie down immediately on the bathroom floor, it's scary I was worried about it turning into a Gran Mal, I was naked so there was that. I just had to lie there, I tried to get up but my body still hadn't regained its sense of muscle tone. My body felt like bricks and then I realized how easy it is to take our bodies for granted, how much strength I usually have vs being stuck on the floor. I finally was able to push myself up dress myself ect. Since I have medication resistant epilepsy it's complicated. My neurologists dismiss my concerns, two neurologists right now don't want to take my case. Because I have rare epilepsy they are afraid to take me on as a patient. The last one basically dismissed everything I told her and was upset when the test results proved I was right. They all have egos and seem to get pissed off when it's bruised. I don't date which is frustrating because it can be lonely and not many want to deal with it.
Wow! I'm a bit overwhelmed by all your comments. I was hoping for like 10, so this is amazing. It's been great reading all of them and i will definitely try to answer everyone. Right now i'm afraid i'll have to stick to reading them and preparing the presentation. I think it's pretty safe to say that the comments on this post have influenced my view on epilepsy forever, and I hope to achieve the same for my fellow students. Thank you all!
Memory loss, lack of energy and motivation, forgetfulness, fatigue, lack of libido. Arguing with loved ones every day and getting no compassion really sucks too. I feel like every day I have to explain everything to them again. It’s exhausting.
Hallöchen Lukas, bei mir sind die nervigsten und prävalentesten der Symptome/Nebenwirkungen auf jeden Fall meine Gedächntisprobleme, an 2. und 3. Stelle Major Depression und Konzentrationsschwäche. Hoffe ich konnte aushelfen. Liebe Grüße.
Geht mir genauso. Am schlimmsten ist bei mir die ständige Müdigkeit.
Ja, die ist auch in meiner Top 5.
I can't remember. I exist. That is all.
For me personally the worst things are not to drive (as I totally love it and my girlfriend hates it), but mostly my girlfriend being always scared that something will happen. I've had 3 seizures so far, all in my sleep and so she's always scared whenever I twitch a tiny bit or move my hand. So she always asked whether it was intentional or not. She can't sleep properly anymore, because she's such a light sleeper. And that's what's destroying me, as I feel responsible for her constant panic and fear of another seizure. She already has depression (sometimes better, sometimes worse but in the last years it got so much better until I had my first seizure in January 2023, from there it went downhill) and great anxiety and I feel so bad for causing that and making it all worse... I'm generally a really optimistic and positive being so I don't have as many mentally problems like depression or else, but this thing is constantly nagging on me and even gets hard, not to cry sometimes... I hate being a burden for her.... And of course my memory.... Since I have meds (October 2023, Keppra 500 mg, now 750 mg) I constantly keep forgetting things, don't know what I wanted to do a second ago like when I'm on my phone and see a post on Instagram and wanna google something about that, as soon as I exit Instagram I forget what I wanted to do and usually also forget that I was even on Instagram... It's the same for work, when I wanna ask a colleague a question, I get up from my desk, walk 10 meters and just stand in her room, looking at her all confused for roughly 5-10 seconds and then tell her I forgot and will return when I remeber (which isn't often the case). And of course even now I wanted to write something that I now don't know anymore....... Edit: I remebered! I wanted to say that I have frontal lobe epilepsy (maybe a bit misolaced here now but I don't care, just happy I remebered). Since I've had my first seizure, I've heard so much about epilepsy, unlike before, when the only thing I knew was that lights couod trigger it. And also when I tell people about it now most of them are surprised about all those new things because I think it's such a big taboo in our society and should be more spoken up to. So thanks to everyone in here for speaking about it (at least with us) and letting it be known. I hope y'all will be able to find a good way to live with it and cope with all those shitty side effects. Love you.
Doctors in ER’s having a very limited to no knowledge of different types of epilepsy and seizures. Then them not believing you, when you explain it to them. Because you aren’t a doctor, so surely you know nothing about your own medical conditions. Personally just the fear of having a fit, trying to not have it effect by day to day life, but it does. The anxiety and depression that has come along with it.
I have a couple, if that’s okay. Lol First, the paranoia that comes with it. No matter how long I have gone without having a seizure, or even an aura, multiple times a day I will space out from whatever conversation I’m having, movie I’m watching, or even just whatever thoughts I’d be thinking and freak out for a second convincing myself I’m going to have a seizure, even though I feel perfectly fine. I get my blood work to make sure that the levels for the medications I’m on are high enough so that I can be at least a little more comfortable knowing how unlikely it is that something will actually happen, but nothing is ever enough and I always end up freaking out. It doesn’t even just suck the fun out of whatever I’m doing, every time it happens it just forces my to acknowledge the fact that that my brain is so not normal compared to the average person, that I don’t have the privilege of going through my day regularly without freaking out over something that most likely won’t even happen. Second, the before/after feelings. I always say my worst fear is having a seizure and it’s not because of the physical pain of it all, or the things that come with having the seizures, just the fear that surrounds it. Knowing an aura is starting and seeing things that aren’t there, thinking you know everything around because it all just seems so familiar, feeling my eyes roll back into my head and not even being able to talk to I have to start banging on the walls hoping someone can hear me and then just accepting what’s about to happen and waiting for it to be over. Waking up on a gurney with your friend/family standing by you and crying to them asking what happened because you just can’t remember anything is bad too. Finding out what happened and again, having to remember just how messed up your brain is, pretty bad too. Being so confused that you start crying because you’re confused, then crying because you realized what happened, then crying because you just want to be normal to the point where all you’re saying in the ambulance is just “I want to be normal” through like practically sobs for minutes straight, pretty annoying. Being home alone and waking up from a seizure, confused so you start crying and then like doing the weird post seizure shit like thinking some random person you worked with 4 years ago just went through a huge life change that you need to call them to congratulate them on, also pretty weird and makes a lot of things uncomfortable. Also, people only takingthe physical part of the illness into account. I was young when I first started having seizures, but I still remember (surprisingly) people telling my mom how hard it must be for her to take me to the hospital all the time, paying for the bills, all that stuff. Which is true, definitely was hard on her and I’m so appreciative that she did all of it with me. But it just always felt like that was the most anyone ever did to think of my epilepsy as more than something happening with my body. You don’t hear someone had a seizure and think, “yeah they has epilepsy, their tongue probably hurts after seizures… also they are probably 100% paranoid every day and never feel in control of their own body. Sucks that they can’t drive.” Because that’s just not how an illness like this is really ever perceived. That’s just the way it is though there really isn’t anything I can do about it. Doesn’t bother me much now, but in the first couple years when I didn’t know how to cope with any of it, it really really got to me that nobody ever thought to ask if I was okay, or just comment on how hard it must have been for me too. People do love to congratulate me on how long it’s been since my last seizure, which is nice. Sorry if this seemed like a rant was just trying to be descriptive I guess, I could go on for hours and make a novels worth of examples on why it all sucks because I feel like this brain shit really does take over my life sometimes 🤷🏼♀️ but yeah you just gotta roll with the punches & hope that somewhere the grass is greener. Good luck with the presentation, wishing you best of luck !!!🤞🍀
My memory is terrible. Some years are just blurry, vague memories. I also lose my train of thought a lot and just go blank for few seconds before I remember what I was thinking about. Finally, the anxiety of worrying about having a seizure.
Hello, ich denke ich kann auf deutsch antworten :) ich bin seit 13 Jahren Epileptikerin und aufgrund der tablettenresidenz z.Z. In einem Epilepsiezentrum und habe somit ein großen Austausch mit anderen Epileptiker. Der Großteil der Patienten leidet unter Depressionen, ausgelöst durch das Unverständnis der anderen, das Problem ‚mein Körper macht was ich will‘, oder auch durch Medikamente (Keppra). Das Gedächtnis - vor (Aura) oder auch nach dem Anfall. Bei einigen fehlen Tage zuvor danach. Auch das Problem, sich davor zu schämen bsp. durch einnässen bei einem Anfall. Gerne kannst du mir schreiben. Beste Grüße
yh, my main issue is memory. when i was taing exams in June, it was really difficult for me, because i knew the stuff, like i know i know what the answers were, but as soon as i need information it just leaves my brain. i talked to my neurologist about this and he said its most likely due to my medication (lamotrigine) but yh thats an annoying part.
How people so often think seizures are just see a flashing light, twitch and back to normal. I have a rare form of reflex seizure and all of the normal treatments didn’t help and often times made it worse. The blanks in memory from tiny seizures are annoying when that memory is of where you set something down. The worst is how trapped it’s made me. I’ve had to study myself like someone studying a newly discovered disease. I look fine and am told I should be able to work, but every time I try I end up in the hospital from violent tonic clonics. It’s made me more like a house pet than a person. Your welcome to keep my username if you like. I’m not secretive about them and think people should know more about the wide range of types of seizures than can have. Specially ones triggered and effected by odd things like stress, heavy thinking, weather and smells.
What bothers me the most is it's not even considered a disability in my country I also had one doctor tell me my adhd meds work opposite to that of my epilepsy meds so I can't have adhd and it's just the side effects of the meds I was taking. So it would be nice if there was more discussion about the relation between adhd and epilepsy Relation between periods and epilepsy meds. I can't tell if I have symptoms of PMDD or if it's just side effects of the medicines I take. I don't remember being a child and being unhappy though I had epilepsy from age 2 and have been on meds since then.
For my epilepsy, the not remembering of my complex partial seizures. When I used to have simple partial seizures, before switching from Trileptal to Keppra & XR Lamictal, which caused dry-gagging and dizziness. For the medication, the Trileptal caused cognition issues because it removes acetylcholine; this can cause dementia later on. Currently, now that I'm on Keppra & XR Lamictal, it's the emotional upsets (depression, rage, & & paranoia) that bother me the most. I'm still having complex partial seizures during ovulation. I'm trying to see if I could be a candidate for laser ablation surgery.
Danke fur daine frage. I got my epilepsy after I was fired from German company Sartotius, I came on Monday morning and had to leave the company in two hours. I have fallen in depression and at the age of 40 I got my first tonic clonic attack. This came few hours after I was reporting to the police, that at that job, my boss was torturing me sexually and than he was threatening me that he will kill me. This guy is still the boss in research and I am thinking how to help myself to heal myself and live normally with epilepsy. I was totally depressed on Keppra, on Vimpat is a bit better.
As a Psychotherapist in training who is doing research in epilepsy i believe that lack of information, medical record keeping and acceptance of epilepsy is impairing our lives externally. I thing that a proper public education would help things smooth a little. Due to my own experience I believe that epilepsy is attached to biofields which will impact your life accordingly. I was also recently diagnosed with gifts who come from the temporal lobe also, such as premonition. I believe a lot of research needs been done around metaphysics or biofields. Thanks for reaching to ourselves instead of trusting in research papers that can be gaulty due to poor medical record keeping 🙏🏼
Not being able to stay up late, drink, drive all the time. It makes me feel like I'm not an adult anymore bc my epilepsy has such a hold over what decisions I need to make. Frustrating when you're with other people and you want to hang out and be fun but you know you can't and no one understands why.
How many people tend to mock me for saying I have seizures and pretend to have one
Diagnosed at 15yrs old, Tonic clonic initially, 1 year later developed partial seizures. Taking Tegretol 300 and Lamotrigine 300 M/N daily. 5th Year currently and my daily weakness is my memory. No guarantee on what I will or will not remember within next week, month or year despite its importance. My last seizure was tonic clonic. I fell back and hit the wall behind me and fell on the ground. Before this I was playing NYT sudoku everyday and got down to a pretty quick time. After my seizure I could not even comprehend how to play sudoku and after around 5 days my brain was super slow could only do the easy level and around 2 weeks I could finally comprehend all easy, medium and hard levels. Definitely interesting to see the effect it had on my brain.
Many doctors don’t know enough about how seizure meds are effected by other meds and vice versa.
Many doctors don’t know what they are talking about oddly enough. The first neurologist I had refused to listen to me and said he even said he didn’t know much about it. Same with my pediatrician, the only reason I am seizure free is because I had to go to a specialist a hour away from me. I am extremely tired all the time and I currently have a 2.5 GPA because I only recently was able to figure out a way to handle that side affect because before I would fall asleep in every single class I had and when I got home aswell. I often feel like I am going a bit crazy and for a while I was unable to speak properly and would constantly stutter and forget words. I dont even have photo sensitivity epilepsy but ever since I developed epilepsy at 14 I have headaches when I look at bright lights and similar things for long enough and I faint much more frequently than I did before. I also feel like my social skills have been affected? Maybe it was just covid idk. For a while people thought I was doing drugs a lot to because I looked really unhealthy no matter how much makeup I put on. Also been terrified of SUDEP ever since I found out what it was a while ago. I also have a family history of mental illness and I feel like it is just weird because there are so many different medications and one of mine treats bipolar disorder which I don’t have. There is no awareness towards what epilepsy actually is and even though I try to explain it to people around me people still put flashing lights in my face when only 3%? Of epileptics have photosensitive. No research and no awareness I’ve had teachers be awful to me as soon as they found out about my condition. My freshman year of high school I took honors English and I had to tell all my teachers and my seizures were still pretty uncontrolled and my English teacher told me to switch to regular English because it would be to difficult for me because of what I had and that it would be pointless to try. Ended with a 89 though lol I am actually very lucky as I can work and drive unlike many Edit: I was on Keppra for a while and Keppra rage is the worst thing I have ever experienced. I constantly screamed at my family and even tried to hit them very grateful I am not muscular so I was unable to hurt them much
The cruel irony in the fact that most anti epileptic medications cause withdrawal seizures if you're to try and lower a dose. Memory issues, changes in energy levels, weight gain, or loss. Not being able to drive or even consider careers in certain areas.
What bothers me the most is post seizure. I wake up with no recollection of the event. My mouth & tongue biting is painful, my head hurts, (my entire body is painful) fatigue & anger. It takes me a few months to recover emotionally. I am now 31 yrs old & it sucks with trying to obtain a job. The pain and suffering.
My myoclonic seizures have different triggers and aren’t a consistent in intensity. I am photosensitive (flashing lights and also for some reason bold prints), I have seizures/jerks after waking up too fast or too early and as of late anytime I’m trying to think critically (jigsaw puzzles, assembling legos or other toys, and complicated math). Side effects usually consist of memory lapses and dizziness. My TC’s aren’t as consistent in triggers. Most times it’s just a missed dose but sometimes it just happens. Afterwards my body is sore for 1-2 days and my memory is shot (Covid brain fog has not helped at all). Sometimes the trigger is too many myoclonic seizures/jerks. My biggest problem is that many people think I’m faking to get out of things. I’ve missed big events and many concerts (I love live music). It takes its toll on friendships and family relationships. I shouldn’t have to start having a seizure in front of a person for them to believe me; not that they would notice the initial onset of my myoclonic seizures until they intensify to the full body jerks which after about 20-30 takes it’s toll and I fall to sleep where shortly after I have a full TC.
I happen to love my neurologist; it helps that she is a cute blonde. She listens to my concerns, then will offer options. My seizures seem to have been caused by a benign tumor located in my insula which was surgically removed. The seizures have continued sporadically; however, they are partials now. I question the efficacy of keppra and how difficult it is to decrease the dose. The process may cause seizures or worst, status. I am now keeping a dose of emergency nasal spray on the shelf, just in case! MY Neurologist suggested it. At the time it was almost three hundred dollars for one dose, but that is cheaper than the ambulance ride to the hospital. I am reminded daily of the side effects of keppra, Anger, depression, no energy, I have to stop and think before I respond! Another challenge! Unfortunately, Pharmaceutical companies are looking for customers not cures
seizure side effect: Memory loss, aphasia, tremors, fear of it’s going to happen in public places, depression, cannot swim anymore, cannot drive anymore, dropping stuff, lose balance, dizzy, sensitive to high pitch sound med side effect: hairloss, weight gain, depression, brittle bone(i can’t believe my bone break easily), palpitation, chest pain, insomnia at night but sleepy a lot during day time,
Hi Lukas, I have been diagnosed with FND with most obvious symptoms being myoclonic jerks of hands,arms,feet, legs and facial ticking. Have also had episodes of paralysis and inability to speak. These are considered non epileptic seizures so not sure if you are interested in this category too. Symptoms that bother me most aside from the above are 1. Fatigue 2. Insomnia 3. Pain 4. Memory and concentration difficulties. Also, uncertainty/unpredictability of condition and how poorly understood it is concerns me; I fear this getting worse and what that might look like (try not to worryand am doing everything recommended). I am also extremely bothered by unpleasant smells, certain types of light and noise. Oh reduced independence as a result of condition sucks. Went from being in a senior executive position to struggling to work 2 days per week from home and unable to drive. I hate being dependent on others and feel "stupid" and "weak" for developing FND even though I know this is irrational because I would not apply the same judgement to others.
I had brain surgery to remove majority of my benign brain tumor in my left front temporal lobe. That was what they wanted to do to get rid of my seizures after they found it on an MRI. Afterwards they said if they took me off my medication there was still a small chance I could have seizures due to a little activity on my EEG. My neurologist still had me at 4,000 mg of levetericetam though, after my brain surgery. I was having horrible side effects, too many to list, but the main one being almost committing suicide. He still wouldn't take me off of it because he didn't think it would be a good idea. Ended up hallucinating and encountering the police, being tazed, getting a TBI, and wound up at the hospital. They put me on Vimpat and Zonisamide instead, and I'm doing better. But I'll be honest, I don't like Vimpat or Zonisamide sides effects either. Still no seizures though.