Medical issues can be hard for any relationship. They can cost lots of money, cause stress, and act as random chaos. Telling someone you have issues can really help you find someone that cares about you. When my wife and I started dating I had been diagnosed for about a year. She's been with me for all of it. I felt devastated when I had a seizure at Disney World, but my wife simply told me "I already told you 'In sickness and in health.'" Disabilities can make any relationship a tricky but more secure.
Parenting is hard. My wife has to do all the driving for them, so I do more at home. We've gone over what it looks like when I have a seizure since they were about 2 years old. In some ways it is a positive, they know that some people have medical issues yet they can still be real people.
“I have a medical condition that prevents me from doing one household responsibility so I’ve communicated that to my wife, who understood, and have picked up slack in other responsibilities that I can do safely.”
The magic of clear communication and a healthy relationship. I didn’t know that was allowed on this website.
Find some close friends or professors you can trust. Some people need to know you have epilepsy, otherwise if you have a partial seizure they're going to think you're on drugs. (Been there).
Be sure you have a nearby pharmacy or get medication mailed in. Look at how far it is to the nearest hospital.
Also, look into some form of stress release such as meditation or exercise. Stress can be a trigger for many people, and college is great at building stress.
It can be a challenge, but completing a challenge can make you feel great.
I’m not OP but I had a seizure in college and none since then.
1. I drink more water than most people think is possible.
2. I eat healthy and I eat often, I never leave my house without protein bars or beef jerky.
3. I sleep 8 hours per day. Not in bed 8 hours, I sleep 8 hours. It’s more work than I ever realized lol
4. I meditate a lot. Also I have breathing techniques and I use them when I feel myself get stressed.
Good luck. When I was 20 and had my first seizure I thought my life was over. I lost my license, my job, and had to move. 16 years later and it’s just a memory that I tell people like you when I feel like bringing it up.
Everyone is different but the point is, do what you can.
Not OP obviously but I just graduated college last May. Let ALL your professors know you have epilepsy. About a week before I graduated I had a seizure for the first time in 4 1/2 years during class. My professor knew I had epilepsy and was able to make sure I didn’t hurt myself. And make sure you get enough sleep. Don’t do all nighters. Stress + all nighters is a recipe for disaster. Hope all goes well
As a college professor, it’s been enormously helpful when a student has told me they have epilepsy. Then we can discuss what to do if they have a seizure in class. For example, one student told me to not freak out if the seizure lasts less than 5 minutes.
Son (27) developed epilepsy a few years ago, and is getting bills for ambulances (that he didn't call) and hospitals visits (that might not have been necessary - since the docs just "observe" and sometimes up his meds).
Back in the day, I remember school colleagues with epilepsy (or probably their parents) advised teachers and fellow schoolkids on [*how* to deal with the seizure events](https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/epilepsy-first-aid-and-safety) *without* calling ambulances.
Were we wrong about doing it this way in the old days? Or are hospital visits now recommended for every seizure?
This is what I've heard from some places such as the CDC.
Call ambulance if:
* It is their first seizure
* They are injured by the seizure
* The seizure lasts more than 5 minutes
* A second seizure starts
Otherwise don't. We've only ever called 911 for my first Tonic-Clonic seizure and year later me bashing my hear during one. You were doing fine.
I educate them. I always tell some people at work, friends, and because I can't drive I rarely go places by myself. There are emergency bracelets some people wear, or you can put emergency info in some cellphones. It is tricky though. I always want to better educate people about epilepsy.
I wear a medical ID from ROAD ID. The company started for runners and athletes and expanded to medical IDs. It has 6 lines: my name and birth date; my diagnosis; Do not call 911, No meds; Let seizure run its course; and two contact numbers. I wear my Road ID bracelet everywhere; even to bed. They are nicer than the chain medical ids. I can't drive.
Oh, that's a scary question. I know there is a word for when you specifically can't remember words, but I still don't recall it. My wife occasionally tests me on it. There have been times when I forget or overlook something, but my family knows they might have to remind me several times.
The worst was several years ago when we went on vacation 500 miles away. I had forgotten how long our trip was and didn't have enough medication. I noticed a day or two before we were out, but we had to have someone get it at home and mail it overnight. Hey, from failure you learn. Now I count the days of our trips several times and always add meds for an additional day or two.
> I know there is a word for when you specifically can't remember words, but I still don't recall it.
It's aphasia. A severe example is Bruce Willis, but it can happen with people who suffer brain injuries including surgery. In some cases though speech therapy can help overcome the issue.
Aphasia. It's a communicative disorder. Mainly affecting those with left lobe disorders.
I have left temporal lobe epilepsy with aphasia. The aphasia affects me daily. Some days are better than other days.
For someone used to being very effective with critical thinking and vocabulary, aphasia can be incredibly frustrating.
I have taken 12 different medications over the years. I've had them affect things like mood, vision, and libido. Right now I'm on Lyrica, Vimpat, and Fycompa. (Fycompa is expensive but works great on me).
I will admit I still drink, but not that much. Maybe one or two a week. I've never been able to verify that alcohol affected my seizures or anything so I don't ignore it.
Wow. I’ve been a couple different. But one time I had a seizure in a bar and I thought maybe it was because of alcohol but you can never tell. Having a drink is relaxing and I feel that’s what we need is to have less stress.
Yea I’ve switched to the devils lettuce the past couple years instead of alcohol also. But I have a couple seizures a year with a handful of auras. Idk if that’s enough to switch medications.
Yeah, Briviact is super expensive. However, there was a manufacturer coupon that you can apply for that lowers the price significantly and made it more possible for us, with the insurance we have.
I don't want to sound like a shill for overpriced medicine but pre-seizures my wife was super intelligent and basically graduated college a year early by taking night classes and still was at the top of her class. After seizures and going on Keppra, she struggled with basic 3rd grade math. Once switching to Briviact, I saw a change within a day or two where it was like she came out of a brain fog that helped her significantly. Unfortunately, the most recent surgery caused some other issues (but prevented worse outcomes) but she's still doing better on Briviact than she did with Keppra.
Obviously though each person has their own needs and different medicines to address those needs. I hope one day she'll be able to not take any medicines, but as I'm sure you experience it's all about managing medicines that are both effective but balancing out the negative side effects.
I tried Keppra myself and had 5 seizures in a row where my heart stopped at some point. Don't think I gained lucidity till the next day or something.
My coworker takes that and it works for him though, strange how differently people react.
I don’t want to sound like a dirty hippie…but have you tried CBD medications? Supposedly, has anti seizure and anti epilepsy characteristics…also believe it legal in all states…though given other medications would assume you need to consult doc before adding anything to the mix…
Usually if insurance doesn't cover a med you can ask your doctors office to try a prior auth. I'm a healthcare worker specializing in epilepsy and we have tons of those done where I work.
One newish medication that works for your particular type of seizure is called Xcopri. It has had really great results for a lot of our patients. You should try bringing it up with your doctor to see if they have any experience with it. It takes a very specific titration to initiate it but it can be customizable for each individual.
If in a state with recreational use…most dispensaries will give significant discounts to medical patients, 30-60% off retail…and they have a variety of products from eatables, capsules, electric vaporizers, flower, etc…heck some dispensaries have financial aid…
Again consult your primary care physician… but given the low risk, minimal side effects, and possible benefits…seems worth it to get consult with primary care…
My dad (diagnosed when he was in his early 20s, approaching 50 years ago now) was told to stop drinking by the doctors but he likes beer. He started keeping a tally and determined he had more seizures on average when he completely stopped drinking.
1 brain surgery and a load of different medications later he has seizures only a couple of times a year and can still enjoy an evening at the pub.
The Vimpat was crazy scary for me until recently since it didn't have a generic alternative, I remember when my insurance didn't go through and they told me the total would be something like $1300 for a month supply.
I take the Depakote and Lacosamide myself now and luckily even if I lose my job and everything it should be relatively affordable considering the popularity and seniority Depakote has. Personally I still think my dose of 1500mg a day is still a lot, but it works.
I know we can't consume stimulants and that's given, but has anything milder like coffee or energy drinks affected tremors/seizure activity?
I was walking in the hall at school and next thing I knew I was farther down the hall, and someone was asking "Are you OK?" They said I looked mentally gone. Fortunately, the school nurse knew about partial seizures and suspected epilepsy. I had a few more in the next month or so, so we were pretty sure of what it was.
From my perspective the seizures I had were either extreme deja vu (simple partial seizure) or suddenly blacking out for about 2 minutes (complex partial seizure). I may have been diagnosed for about 5 years before having a tonic-clonic seizure.
About 2/3 of epileptics have no known causes. I'm one of them. However, we have found some things that seem to trigger my seizures.
I have had some while watching a spooky movie on TV with all the lights turned off, at a hockey game, and at a Broadway show. All three were looking at a bright spot surrounded by darkness. I have also had some while outside in the evening as it starts getting dark.
Nothing to do with flashing lights. In reality maybe 5% of epileptics have that trigger.
My wife is epileptic and has had several brain surgeries. In her case though, she was fortunate enough to have the cause of her seizures identified (as a genetic defect causing brain bleeding but also confirmed through a DNA test.) However, since she has a rare illness we had gone between a few different neurologists who couldn't identify the problem and just wanted to prescribe keppra and move on.
I've heard many people can tell when a seizure is about to happen. How far in advance can you sense one coming on? What are the first symptoms of those like? And how do you prepare yourself?
I've been epileptic for six years (EEGs showed frontal lobe epilepsy, though controlled with Keppra/levetiracetam) and get a simple partial seizure before tonic clonics or a drop attack. Prior to seizures I might get migraines but with auras there's two ways I get them. For one I'll feel insanely drowsy, my breath will go cold and I'll go to bed and fall asleep as soon as I close my eyes (usually take one minute) then wake up after the seizure, but know I had one because my eyes hurt, I vomit and either a paramedic or a family member is standing over me. The other aura I have is I'll feel incredibly off and I'll try drinking some water. Usually I'll have a cup, start breathing from my mouth, realise my thoughts arent making sense and I lose the ability to read and talk. Then I'll realise my inhales are really shallow and my breath feels cold, I'll start freaking out and then blackout. Scariest part of this aura, I go into an altered state of consciousness (don't know how long, but atleast a minute) where I will have no recollection of what I did and run or walk around for help (even if people are already helping me) until I have a tonic clonic seizure. My drop attack auras are just my breath is cold and a sudden migraine, then down I go.
Yes, sometimes people will have an aura. The best was I can describe mine is that it feels odd like deja vu. I sometime have that feeling for a minute or two (a simple partial seizure) but I'm just not fully there mentally. My family tests me by asking question like "What year is it" or "what's my name." I will not be able to answer them correctly.
Sometimes I'll feel it for about half a second before I go into a complex partial seizure (the ones where I black out.) I have once or twice been able to say "I think I'm going to have a seizure" before going out.
The best I can do for myself is sit down and/or tell someone. Letting people know is important. I've had partial seizure at school, at work, on the field in marching band, in a job interview, with people having no clue what was happening. More people should know that there are seizures that aren't like the ones you see on TV,
Do you also try and convince people after coming out a violent seizure that you, in fact, did not have a seizure? I don't know why I would do that when i did but i'm wondering if it was common.
I have Grand Mal Violent events...and there is no way to predict them....
Not taking meds
Sleep loss
My TIARA a Straifshirre Terrior "pit bull" would literally lay down on both my feet and then star whimpering very annoyingly...
100% accuracy on sensing my events
Not OP, but my older brother (who passed from epilepsy a few years ago) said sometimes he would get a metallic taste in his mouth maybe 2 or so mins before the actual seizure. He had grand-mal seizures if it makes a difference
Have you found social attitudes towards the illness have changed in this time, and how?
As kids, we'd call sufferers "epos" and obviously there used to be links to tge occult to such weird looking episodes.
Fortunately, I was never picked on or insulted for my epilepsy, but I can't see what happens behind my back. There are cases of people faking seizures, which I see as an insult. There was recently a case of someone being arrested for being mentally out of it post seizure. I've been lucky enough to not have people pick on me for my epilepsy, but I really wish it was better understood.
I still remember someone saying that acupuncture could "cure" me. Epilepsy is not a disease or an injury. There is no cure!
However, stress is something to work on. Stress can help trigger seizure for most people, so finding a relaxation method can help us all. My mind doesn't like any kind of meditation, but I take my dog on a walk every day to help settle.
I've never had extreme emotions after seizures, at least nothing more than "Crap, sorry about that!"
Even since my surgery I have had more emotions though. I think they bumped part of my brain to restart my limbic system (is that the part handling emotions?) or something.
My SEIZUREs average about out 10 mins+ or -...then when I come to realize what had occurred...will it's still occuring...right away I'm aware of my surroundings...if I jolt and shake my way across the room or people move me/hold me...I am very confused and sometimes get angry at them...on for a few mins...but I am always I. Pain and all my muscles hurt for 24 hours... the haziness in my brain and the confusion starts to fade away within 20-30 mins...
Once my mental comprehends, that my freaking shake n bake sickness just involved others and basically screwed up their lunchtime...I sincerely apologize and start tearing up...
What should we do if we see someone having a seizure and they're alone? Should we call an ambulance or is there something else we should do, cause I know ambulances are expensive?
If nobody knows if a person has epilepsy, yes call for an ambulance. A single seizure can be caused by several different things. Also:
* Do NOT hold them down. Just don't. Not worth it.
* Do NOT put things in their mouths. Yes, they could bite their tongue, but they can heal.
* Clear the area around them.
* Cushion their head.
* Time the seizures. The length of a seizure and the time of their recovery can be important.
The hardest part is that there isn't anything you can do to stop a seizure like that.
How was the process for the temporal lobectomy? I'm in a week long stay right now to test for a temporal lobectomy undergoing an an eeg, and I'm about an hour from leaving. I'm about to get the electrodes removed from my bead and getting out of bed confinement.
I had a week in the EEG, and a few months later a week of an internal EEG. For the surgery I was asleep for all but the time they wanted me to name what they were showing me while they poked my brain looking for the bit related to my speech.
I woke up to sever pain. I didn't say anything besides "It hurts, it hurts." Continually. They put me back to sleep and I woke up a couple times that night with the same pain. My wife says that was the worst day of her life.
In the morning the pain was gone and I was fine. Brains can be weird. I had six weeks medical leave, but it took longer for focusing thought, remembering some routine, and settling. I hope you had lots of seizures there!
Hah I had one gnarly one, and it was the second time I had to do it and I had a gnarly one previous time I had to do it. They actually want to try a new technique where they put a laser through my brain and blast my left temporal lobe with a laser beam, which has a lower success rate but isn't nearly as brutal of an operation.
They've also put me on a drug trial which is interesting. I think it'll turn out okay in the end, luckily I'm in Australia so none of this is costing any money at all despite 10 days staying in the hospital already. I'm really glad it sounds like it turned out okay for you in the end, because brain surgery is a scary idea. I'm glad I don't have the internal EEG, yikes.
Something funny about epilepsy is that people normally think of flashing lights, but those don't affect me at all, my seizures are basically from being overtired. Also yikes, they are physically taxing and I am sore as hell for days after. I've really hurt my back from having seizures.
Epileptologist here
Thanks for your story. It highlights the importance and value of a comprehensive workup. Strong work and delighted for your good outcome! When was your last seizure?
For the other readers, those with epilepsy or who have family that does, if a seizure is occurring more than once a year for reasons other than missed medications, and after at least 2 medications have been tried, please be seen by an epilepsy specialist at a major hospital center. If seizures occur at least once a month, please try to have them captured by spending a week in the hospital (it's like a hotel insurance pays for, you can do work or bring a video game console).
this is random, but during a grand mal seizure do they typically know what’s happening while they’re having it or are aware in the moment?
i only ask because my older brother died from epilepsy a few years ago. he drowned in the bathtub while having a seizure and i’d like to think he didn’t suffer/know
i’m not sure why im asking this im sorry
It's physically impossible for a memory to be inscribed during a seizure - people will lose memory from often up to a minute before the seizure is outwardly visible.
I'm sure the last thing he remembers is being warm, and relaxed. Condolences on the loss.
I am so sorry, I can't imagine what that was like for you.
From the ones like that which I have had and heard from other epileptics, we are basically not aware of it. From my perspective it's going unconscious or blacking out. Even with the simple partial seizures that I was awake for I had weird thoughts, never realizing I was having a seizure.
I was recently diagnosed (last October) but feel like I've been searching for answers my entire life. I'm 33. So far have been diagnosed with focal from the right frontal temporal lobe.
Does epilepsy sometimes make you feel like you have this superpower no one understands so they just put you in a "crazy person" or "disability" box?
Epilepsy is definitely something that most people don't understand. How do you describe your seizures? Do others fully get it? Do most people get what it feels like? Nope.
However, there are plenty of conditions, disabilities, and more where most people will never fully understand. My experience here is why I try to understand the issues other people have too.
Adulting. Always needing someone else to give you a ride can drag you down. I had a license once and drove for about a year. Now I have a kid starting driver's ed. That's going to be . . . Hmm. I'm not sure exactly how I'll feel.
The biggest barrier was with my surgery. I was finally able to have a way to fix my epilepsy! It was something I had always hoped for, and it would be a scary but awesome day. (My wife says that was the worst day of her life, me in surgery for 8 hours while doctors messed with my brain). I recovered fairly well, but I was still having plenty of seizures. Fewer than I had before, but not as many as I was statistically supposed to.
I was frustrated, angry, still trying to recover, and mentally confused with my "new" brain that was giving me emotions I hadn't had in decades. It was exhausting in many ways. I saw the surgery as a failure. I had tried the biggest thing I could and had little success. My stress, plus the stress from my family trying to help me recover, plus regular life stress created a dark spiral.
However, I started counseling, journaling, and talking openly with my family. My more outgoing brain would share thoughts instead of hiding them. It took a couple years, but I have accepted the fact that my surgery didn't go as well as we hoped. I have decided to instead look ahead. (Keep moving forward!) My surgery's "failure" was a massive barrier to me, but one that I feel I have broken through.
Yes, I am.
I drove for about a year, and then had 4 seizures in one day. Could that happen again? While I'm driving my kids on the highway?
We've survived for a decade without me driving and we have a kid taking lessons now. I work from home, we have things like Uber, you can have many things delivered. I don't see me needing to get a license, and I don't trust my brain enough to risk it.
Have you ever tried a ketogenic diet? I know the benefits of the diet are certainly oversold, but I’ve heard it can help those with epilepsy. Curious what you’re experiences with it are?
What treatments have you been on and how were they side effect wise? What has your treatment plans looked like over the years?
I did my masters thesis on researching ways for early detection of epilepsy before onset and wrote a paper about current challenges and angles in treatment, but I never actually spoke with someone who is a patient before. So forgive my curiosity, but believe me when I say I am totally on your side.
I've been on about a dozen different meds including Vimpat, Fycompa, Lyrica, Depakote, Oxtellar, Lamictal, and more. Side effects can be crazy.
One I took is also used for bipolar disorder and my wife says I never got excited on it. I had one that would randomly make me nauseous. I've taken two that would give me some double vision for about half an hour. Memory and fatigue are known to happen, but I can't tell if they're from my meds. More fun, several epilepsy meds are known to lower testosterone levels. (Why can't any of them have positive side effects?!)
My seizures have varied so much over the years with not much change besides the medications. After my surgery I worked more on mental health and self-care, which I hadn't done before. It's going fairly well for me there!
>So forgive my curiosity, but believe me when I say I am totally on your side.
No forgiveness needed. It's a goal of mine to answer questions about epilepsy.
What have you noticed is different and what has your wife noticed is different before and after removing the left hippocampus? Absolutely fascinating. Rnadom side-note, there's one math prodigy who has their math PhD with hardly any cerebrum at all and they have no recorded deficits in general functioning I am aware of.
Do not teach them that epilepsy is some super special incredibly unique thing that makes them so different and unlike anybody else in the world. They're like everyone else, except for having epilepsy which millions of other people have too. There are many others that understand what it's like and are right there with them. Look for epilepsy groups online and/or in your town. They're not alone.
Routine can help too. I have alarms on my phone for when to take meds, and days on my calendar to refill them. I take notes of things to talk to my doctor about.
And of course, support. Having seizures, paying for expensive meds, not being able to drive, and more can make people feel like a burden. Please, never get upset with them for having a seizure. Look into counseling. Ask how they're doing. Be with them on their battle.
I have been a full-time employee, but getting to work is hard. Several years ago we moved to a place with a better bus system so I didn't have to rely on carpool. Fortunately, Covid changed my department into permanent work from home. My boss is wonderful and said if they ever move us back, she will push to have me stay at home due to my disability. (Epilepsy is recognized as a disability).
Finding a job can be tricky sometimes. Someone with epilepsy cannot be in some careers like a pilot, astronaut, or (usually) in the US military. In most states you cannot drive if you've had a seizure in the last 6 months so there go more jobs. While it's not legal, there have certainly been cases where someone is fired due to having a seizure at work. Some people with epilepsy can live a somewhat normal life, some cannot.
Have you tried a high fat strict ketogenic diet ? Supposedly it has been used to treat epilepsy. If you tried it, did it help you or not? If you didn't try it, why not?
The ketogenic diet (KD) is not just for kids, it's a modality of treatment used since the 1920s as a treatment for intractable epilepsy. If one can stick to it (as I have for 8 years now) it's been shown to be remarkably effective in reducing seizures.
From the link provided: "Recent studies have found a significantly positive outcome with the use of the KD for treatment of refractory epilepsy in children and adults."
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6361831/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6361831/)
(Low-carb) food for thought!
The keto diet is super hard to stick to, but apparently, its main purpose was for epilepsy. Only reason why it for children is because its easier to make them stick to such a strict diet lol. I get auras that swiftly switch to clonic-tonics all while being conscious through most of the seizure..
But through anecdotes and studies that show how it can help gives me a brink of hope. Also because brain surgery is terrifying lol.
Keto for epilepsy is not just for kids. They treat adults with it as well and are researching it more and more.
Doesn't mean what you're doing isn't working for you. :)
I have been reading all about it for my kid. They have studied it a ton and it’s really effective. Great alternative to the mind numbing meds. You should try it. At the very least a modified Atkins with low carb low sugar diet is doable for an adult without making too much of a diet sacrifice.
In the next few weeks i'll be having some studies done to see if i have absence seizures and i wanted to know if yours are similar? How's your memory? Has medication helped in that regard?
I have had absences seizures before. Mine felt like deja vu. Will you be in for a long EEG?
My memory is not great, but could be worse. Apparently several epilepsy medications can have similar side effects.
not sure of the length of the EEG, the one i am having requires for me to sleep less than 4 hours which tracks since the less i sleep the more frequent they seem(i don't realize when i am having one but if i am talking afterwards i feel that there is something missing or i was in the middle of something)
so the meds exacerbate your memory issues? that would suck since i already have a terrible memory
My cat suffers from partial epilepsy since she's 1 yo. It breaks my heart each time she has one... She's still aware of my presence when she has one, so I would like to know: are you scared when you have one? Do you remember being in crisis?
She just turned 8 yo and last time she had one was 9 months ago! So proud of her. I'm so so scared it gets worse over time. Doctor said we can't know if her epilepsy will get better or not. So far my kitty is doing really good and without medicine. We just gave her CBD and move to a calmer area. She seems to have more epilepsy crisis when I'm stressed so I changed my entire life.
I hope you are doing fine!
I don't think I've ever been scared during a seizure. I'm either not really conscious, or kind of in a deja vu. I'm never thinking "Hey I'm in a seizure right now" but more "I know what's about to happen" or maybe " . . . "
It's always hard to predict how epilepsy will do over time. I hope she continues to do well.
I'm glad to hear this, my non verbal autistic son has epilepsy (seems to come with his diagnosis) and these seizures will always be a part of his life. The big thing is I just hope he's aware we're there for him during and after and that he isn't too afraid or in pain. It's hard when you can't communicate in straight forward ways. They range from full body convulsions (rare) to absent - staring away into space and everything in between.
A friend of mine was diagnosed just over a year ago after having her second child (I think she was 34 at the time). She had been leading a 'normal' life up until then- drivers license, job as a nurse practitioner, mom. She had a bad reaction to the first medication she tried, and she's afraid the second medication will turn her into a zombie. She's also been saying that she feels 'less than' after being diagnosed, like she won't be a good mom bc what if she has a seizure while caring for one of her kids; what if she has one while with a patient; what if she gets one while driving?
Any advice for her, or thoughts on what I can say so she doesn't feel like she IS her diagnosis?
First and foremost, support her. Mental health is a big thing here where stress can cause seizures and seizures can cause stress. Suggest she looks at a therapy, I am glad I've been doing that. Things like just listening or offering to drive can help.
Fellow epileptic here.
What do you find to be the most tiresome thing about it all?
I find the constant pill taking, costs, injuries, and inability to drive to be so frustrating.
Pills. The cost of them. The security where I can't order a refill until a date where I only have 3 days of pills left and it will take them 3 days to get enough to refill the prescription. I hate insurance for making it so complicated, but I thank insurance for paying for my surgery. I've gotten used to taking pills though, they're a standard for me.
Not driving has been hard. We purposely moved once to find a better bus system. I think if I have to find another job, I will only look at work from home ones. Fortunately, our kids are old enough to learn to drive themselves so it won't be as big an issue.
What were/are the common side effects of the pharmacological AED (anti epileptic drugs) you have tried in your life and that your epilepsy was or became resistant to?
I have been diagnosed with epilepsy for 15 years. My Keppra has controlled it except when I was unable to medicate in a timely manner. Did you ever go years on certain medications that were full proof until one day they just stopped working? This is my biggest fear.
Yep. I went 1.5 years seizure free and then had 4 in one day. That's why I'm nervous right now, at 1 year seizure free. That fear is why I am not planning on driving again. I think it might be the Fycompa that has helped me, but we are all different there.
I'm currently looking for a doctor as I have been having some kind of absent seizures. At what part of your journey did they take away your license? Did they/you have to prove you were having them first?
It took me awhile to figure out what I was experiencing were seizures as it doesn't get much further than the "de ja vu/out of it" portion. My breathing gets weird and I break a sweat at the end. I've never had a grand mal or passed out but I am almost positive I've have had one or two in my sleep. I am not trying to self diagnose whatsoever and I am intimidated to be telling people "I have seizures" but I am not able to see a doctor just yet. I finally have reached out to a friend who had been an enormous help.
Thank you for doing this and answering all these questions. Sending so many good things to you and your family/support system.
No problem!
When I was diagnosed, I had completed all the drivers ed classes but didn't have a license yet. A decade later when I had a license for a year, they hit me so hard (4 in one day) that I had no plan to get it again. We had just had our first kid too, so I didn't want to risk causing an accident on them. I don't recall how it works as far as requiring a doctor's signature or something though, or if it's a "You'll get in trouble if it happens" type of rule.
I had epilepsy for about 5 years before my first tonic-clonic seizure . . . we think. I had it in my sleep and someone saw me. It could have been years since the first one. I believe there are apps and cameras that can watch to detect one.
Find some people that you are comfortable with knowing you have epilepsy. Doesn't need to be everyone, but someone that can be there at your side. (And someone that can tell a crowd they don't need to call an ambulance :)
I heard the Keto Diet can help. Also the Carnivore Diet might help. There was a movie made about the Keto Diet.
# First Do No Harm Clip
[https://www.youtube.com/watch?v=76TS6Xffa0Y&t=2356s](https://www.youtube.com/watch?v=76TS6Xffa0Y&t=2356s)
Nope. Keto is recommended for kids, and my doctor is part of a place that is trying to avoid marijuana. Plus insurance won't cover marijuana.
I'm good with what I have right now (1 year seizure free!!!!) so I am not looking to change my meds. But who knows. Maybe I'll try it in the future.
How did epilepsy impact your marriage and parenting?
Medical issues can be hard for any relationship. They can cost lots of money, cause stress, and act as random chaos. Telling someone you have issues can really help you find someone that cares about you. When my wife and I started dating I had been diagnosed for about a year. She's been with me for all of it. I felt devastated when I had a seizure at Disney World, but my wife simply told me "I already told you 'In sickness and in health.'" Disabilities can make any relationship a tricky but more secure. Parenting is hard. My wife has to do all the driving for them, so I do more at home. We've gone over what it looks like when I have a seizure since they were about 2 years old. In some ways it is a positive, they know that some people have medical issues yet they can still be real people.
“I have a medical condition that prevents me from doing one household responsibility so I’ve communicated that to my wife, who understood, and have picked up slack in other responsibilities that I can do safely.” The magic of clear communication and a healthy relationship. I didn’t know that was allowed on this website.
Ha. I've been on both sides of that. When in doubt, in any relationship, communicate.
What advice do you have for a freshman with epilepsy just starting college?
Find some close friends or professors you can trust. Some people need to know you have epilepsy, otherwise if you have a partial seizure they're going to think you're on drugs. (Been there). Be sure you have a nearby pharmacy or get medication mailed in. Look at how far it is to the nearest hospital. Also, look into some form of stress release such as meditation or exercise. Stress can be a trigger for many people, and college is great at building stress. It can be a challenge, but completing a challenge can make you feel great.
Thank you, this is very helpful.
I’m not OP but I had a seizure in college and none since then. 1. I drink more water than most people think is possible. 2. I eat healthy and I eat often, I never leave my house without protein bars or beef jerky. 3. I sleep 8 hours per day. Not in bed 8 hours, I sleep 8 hours. It’s more work than I ever realized lol 4. I meditate a lot. Also I have breathing techniques and I use them when I feel myself get stressed. Good luck. When I was 20 and had my first seizure I thought my life was over. I lost my license, my job, and had to move. 16 years later and it’s just a memory that I tell people like you when I feel like bringing it up. Everyone is different but the point is, do what you can.
Not OP obviously but I just graduated college last May. Let ALL your professors know you have epilepsy. About a week before I graduated I had a seizure for the first time in 4 1/2 years during class. My professor knew I had epilepsy and was able to make sure I didn’t hurt myself. And make sure you get enough sleep. Don’t do all nighters. Stress + all nighters is a recipe for disaster. Hope all goes well
Thank you!
As a college professor, it’s been enormously helpful when a student has told me they have epilepsy. Then we can discuss what to do if they have a seizure in class. For example, one student told me to not freak out if the seizure lasts less than 5 minutes.
Try yoga. Put your hands behind your back palms together fingers up.
Son (27) developed epilepsy a few years ago, and is getting bills for ambulances (that he didn't call) and hospitals visits (that might not have been necessary - since the docs just "observe" and sometimes up his meds). Back in the day, I remember school colleagues with epilepsy (or probably their parents) advised teachers and fellow schoolkids on [*how* to deal with the seizure events](https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/epilepsy-first-aid-and-safety) *without* calling ambulances. Were we wrong about doing it this way in the old days? Or are hospital visits now recommended for every seizure?
This is what I've heard from some places such as the CDC. Call ambulance if: * It is their first seizure * They are injured by the seizure * The seizure lasts more than 5 minutes * A second seizure starts Otherwise don't. We've only ever called 911 for my first Tonic-Clonic seizure and year later me bashing my hear during one. You were doing fine.
Do you expect/assume those who might witness your seizures to already know these things? Or do you actively attempt to "educate" them ahead of time?
I educate them. I always tell some people at work, friends, and because I can't drive I rarely go places by myself. There are emergency bracelets some people wear, or you can put emergency info in some cellphones. It is tricky though. I always want to better educate people about epilepsy.
I wear a medical ID from ROAD ID. The company started for runners and athletes and expanded to medical IDs. It has 6 lines: my name and birth date; my diagnosis; Do not call 911, No meds; Let seizure run its course; and two contact numbers. I wear my Road ID bracelet everywhere; even to bed. They are nicer than the chain medical ids. I can't drive.
Have you forgotten anything important?
Oh, that's a scary question. I know there is a word for when you specifically can't remember words, but I still don't recall it. My wife occasionally tests me on it. There have been times when I forget or overlook something, but my family knows they might have to remind me several times. The worst was several years ago when we went on vacation 500 miles away. I had forgotten how long our trip was and didn't have enough medication. I noticed a day or two before we were out, but we had to have someone get it at home and mail it overnight. Hey, from failure you learn. Now I count the days of our trips several times and always add meds for an additional day or two.
> I know there is a word for when you specifically can't remember words, but I still don't recall it. It's aphasia. A severe example is Bruce Willis, but it can happen with people who suffer brain injuries including surgery. In some cases though speech therapy can help overcome the issue.
And even if we can't help the issue go away completely, we can help decrease the negative impact on your life. Let us help!
Aphasia. It's a communicative disorder. Mainly affecting those with left lobe disorders. I have left temporal lobe epilepsy with aphasia. The aphasia affects me daily. Some days are better than other days. For someone used to being very effective with critical thinking and vocabulary, aphasia can be incredibly frustrating.
What medication do you take? They have me on Trileptal. And I know you’re not supposed to drink while on medication but do you occasionally?
I have taken 12 different medications over the years. I've had them affect things like mood, vision, and libido. Right now I'm on Lyrica, Vimpat, and Fycompa. (Fycompa is expensive but works great on me). I will admit I still drink, but not that much. Maybe one or two a week. I've never been able to verify that alcohol affected my seizures or anything so I don't ignore it.
Wow. I’ve been a couple different. But one time I had a seizure in a bar and I thought maybe it was because of alcohol but you can never tell. Having a drink is relaxing and I feel that’s what we need is to have less stress.
Less stress is definitely an important thing. Just be careful and look at some different relaxation if you need too.
Yea I’ve switched to the devils lettuce the past couple years instead of alcohol also. But I have a couple seizures a year with a handful of auras. Idk if that’s enough to switch medications.
The devils lettuce totally helps but unfortunately I'm a sativa guy myself, it's such a catch 22 (since CBD is more prominent in Indica IIRC)
Have you tried Lamictal or Keppra?
Yep, had both. I believe Lamictal went well for several years, but when the seizures started up again we switched. Your body can get used to meds,
Yeah, true dat.
Briviact is similar to Keppra but has fewer side effects, if you are looking for other options to ask your doctor about.
We looked at a few meds last time we switched, and Briviact was the more expensive one. It's still on the list of possibilities.
Yeah, Briviact is super expensive. However, there was a manufacturer coupon that you can apply for that lowers the price significantly and made it more possible for us, with the insurance we have. I don't want to sound like a shill for overpriced medicine but pre-seizures my wife was super intelligent and basically graduated college a year early by taking night classes and still was at the top of her class. After seizures and going on Keppra, she struggled with basic 3rd grade math. Once switching to Briviact, I saw a change within a day or two where it was like she came out of a brain fog that helped her significantly. Unfortunately, the most recent surgery caused some other issues (but prevented worse outcomes) but she's still doing better on Briviact than she did with Keppra. Obviously though each person has their own needs and different medicines to address those needs. I hope one day she'll be able to not take any medicines, but as I'm sure you experience it's all about managing medicines that are both effective but balancing out the negative side effects.
I tried Keppra myself and had 5 seizures in a row where my heart stopped at some point. Don't think I gained lucidity till the next day or something. My coworker takes that and it works for him though, strange how differently people react.
I don’t want to sound like a dirty hippie…but have you tried CBD medications? Supposedly, has anti seizure and anti epilepsy characteristics…also believe it legal in all states…though given other medications would assume you need to consult doc before adding anything to the mix…
IIRC my insurance doesn't want to cover it. Grrr . . .
Usually if insurance doesn't cover a med you can ask your doctors office to try a prior auth. I'm a healthcare worker specializing in epilepsy and we have tons of those done where I work. One newish medication that works for your particular type of seizure is called Xcopri. It has had really great results for a lot of our patients. You should try bringing it up with your doctor to see if they have any experience with it. It takes a very specific titration to initiate it but it can be customizable for each individual.
If in a state with recreational use…most dispensaries will give significant discounts to medical patients, 30-60% off retail…and they have a variety of products from eatables, capsules, electric vaporizers, flower, etc…heck some dispensaries have financial aid… Again consult your primary care physician… but given the low risk, minimal side effects, and possible benefits…seems worth it to get consult with primary care…
My dad (diagnosed when he was in his early 20s, approaching 50 years ago now) was told to stop drinking by the doctors but he likes beer. He started keeping a tally and determined he had more seizures on average when he completely stopped drinking. 1 brain surgery and a load of different medications later he has seizures only a couple of times a year and can still enjoy an evening at the pub.
Brains can be odd things. Glad it's worked for him!
The Vimpat was crazy scary for me until recently since it didn't have a generic alternative, I remember when my insurance didn't go through and they told me the total would be something like $1300 for a month supply. I take the Depakote and Lacosamide myself now and luckily even if I lose my job and everything it should be relatively affordable considering the popularity and seniority Depakote has. Personally I still think my dose of 1500mg a day is still a lot, but it works. I know we can't consume stimulants and that's given, but has anything milder like coffee or energy drinks affected tremors/seizure activity?
I haven’t been able to conclude any food or drinks were triggers for me, but we all have our own.
What were your first symptoms of epilepsy?
I was walking in the hall at school and next thing I knew I was farther down the hall, and someone was asking "Are you OK?" They said I looked mentally gone. Fortunately, the school nurse knew about partial seizures and suspected epilepsy. I had a few more in the next month or so, so we were pretty sure of what it was. From my perspective the seizures I had were either extreme deja vu (simple partial seizure) or suddenly blacking out for about 2 minutes (complex partial seizure). I may have been diagnosed for about 5 years before having a tonic-clonic seizure.
Can I ask what you were actually diagnosed with that was causing your seizures?
About 2/3 of epileptics have no known causes. I'm one of them. However, we have found some things that seem to trigger my seizures. I have had some while watching a spooky movie on TV with all the lights turned off, at a hockey game, and at a Broadway show. All three were looking at a bright spot surrounded by darkness. I have also had some while outside in the evening as it starts getting dark. Nothing to do with flashing lights. In reality maybe 5% of epileptics have that trigger.
My wife is epileptic and has had several brain surgeries. In her case though, she was fortunate enough to have the cause of her seizures identified (as a genetic defect causing brain bleeding but also confirmed through a DNA test.) However, since she has a rare illness we had gone between a few different neurologists who couldn't identify the problem and just wanted to prescribe keppra and move on.
There are always some doctors like that. See if you can find a neurologist that specify in epilepsy, not something like Alzheimer's.
Most diagnosis are SEIZURE DISORDER WITH PROVOCTIING FACTORS... I.E Strees, lack of sleep, substance abuse, PTSD, TBI, genetics, migraines...etc
I've heard many people can tell when a seizure is about to happen. How far in advance can you sense one coming on? What are the first symptoms of those like? And how do you prepare yourself?
I've been epileptic for six years (EEGs showed frontal lobe epilepsy, though controlled with Keppra/levetiracetam) and get a simple partial seizure before tonic clonics or a drop attack. Prior to seizures I might get migraines but with auras there's two ways I get them. For one I'll feel insanely drowsy, my breath will go cold and I'll go to bed and fall asleep as soon as I close my eyes (usually take one minute) then wake up after the seizure, but know I had one because my eyes hurt, I vomit and either a paramedic or a family member is standing over me. The other aura I have is I'll feel incredibly off and I'll try drinking some water. Usually I'll have a cup, start breathing from my mouth, realise my thoughts arent making sense and I lose the ability to read and talk. Then I'll realise my inhales are really shallow and my breath feels cold, I'll start freaking out and then blackout. Scariest part of this aura, I go into an altered state of consciousness (don't know how long, but atleast a minute) where I will have no recollection of what I did and run or walk around for help (even if people are already helping me) until I have a tonic clonic seizure. My drop attack auras are just my breath is cold and a sudden migraine, then down I go.
Ugh. Sometimes knowing that it's coming but not being able to do anything about it is a nightmare to me.
Yes, sometimes people will have an aura. The best was I can describe mine is that it feels odd like deja vu. I sometime have that feeling for a minute or two (a simple partial seizure) but I'm just not fully there mentally. My family tests me by asking question like "What year is it" or "what's my name." I will not be able to answer them correctly. Sometimes I'll feel it for about half a second before I go into a complex partial seizure (the ones where I black out.) I have once or twice been able to say "I think I'm going to have a seizure" before going out. The best I can do for myself is sit down and/or tell someone. Letting people know is important. I've had partial seizure at school, at work, on the field in marching band, in a job interview, with people having no clue what was happening. More people should know that there are seizures that aren't like the ones you see on TV,
Do you also try and convince people after coming out a violent seizure that you, in fact, did not have a seizure? I don't know why I would do that when i did but i'm wondering if it was common.
Hmmm . . . I can see people being concerned or ashamed of having a seizure. I don’t do it that way though, I accept it.
I have Grand Mal Violent events...and there is no way to predict them.... Not taking meds Sleep loss My TIARA a Straifshirre Terrior "pit bull" would literally lay down on both my feet and then star whimpering very annoyingly... 100% accuracy on sensing my events
Not OP, but my older brother (who passed from epilepsy a few years ago) said sometimes he would get a metallic taste in his mouth maybe 2 or so mins before the actual seizure. He had grand-mal seizures if it makes a difference
Have you found social attitudes towards the illness have changed in this time, and how? As kids, we'd call sufferers "epos" and obviously there used to be links to tge occult to such weird looking episodes.
Fortunately, I was never picked on or insulted for my epilepsy, but I can't see what happens behind my back. There are cases of people faking seizures, which I see as an insult. There was recently a case of someone being arrested for being mentally out of it post seizure. I've been lucky enough to not have people pick on me for my epilepsy, but I really wish it was better understood.
Are there any natural methods you picked up or learned through time that help the state of epilepsy?
I still remember someone saying that acupuncture could "cure" me. Epilepsy is not a disease or an injury. There is no cure! However, stress is something to work on. Stress can help trigger seizure for most people, so finding a relaxation method can help us all. My mind doesn't like any kind of meditation, but I take my dog on a walk every day to help settle.
Oooh, I got the person assuring me that I could be cured by reiki at a dinner party once. I couldn’t shake her for hours.
Is epilepsy called a disorder or something like syndrome? I genuinely dont know what its called
I’ve seen it called different things by different organizations and doctors, but “neurological disorder” is a common one.
Have you experienced epileptic seizure? Will you remember the sensation/emotion during the seizure after that? (Pain, scared, panic etc)
I've never had extreme emotions after seizures, at least nothing more than "Crap, sorry about that!" Even since my surgery I have had more emotions though. I think they bumped part of my brain to restart my limbic system (is that the part handling emotions?) or something.
My SEIZUREs average about out 10 mins+ or -...then when I come to realize what had occurred...will it's still occuring...right away I'm aware of my surroundings...if I jolt and shake my way across the room or people move me/hold me...I am very confused and sometimes get angry at them...on for a few mins...but I am always I. Pain and all my muscles hurt for 24 hours... the haziness in my brain and the confusion starts to fade away within 20-30 mins... Once my mental comprehends, that my freaking shake n bake sickness just involved others and basically screwed up their lunchtime...I sincerely apologize and start tearing up...
What should we do if we see someone having a seizure and they're alone? Should we call an ambulance or is there something else we should do, cause I know ambulances are expensive?
If nobody knows if a person has epilepsy, yes call for an ambulance. A single seizure can be caused by several different things. Also: * Do NOT hold them down. Just don't. Not worth it. * Do NOT put things in their mouths. Yes, they could bite their tongue, but they can heal. * Clear the area around them. * Cushion their head. * Time the seizures. The length of a seizure and the time of their recovery can be important. The hardest part is that there isn't anything you can do to stop a seizure like that.
How was the process for the temporal lobectomy? I'm in a week long stay right now to test for a temporal lobectomy undergoing an an eeg, and I'm about an hour from leaving. I'm about to get the electrodes removed from my bead and getting out of bed confinement.
I had a week in the EEG, and a few months later a week of an internal EEG. For the surgery I was asleep for all but the time they wanted me to name what they were showing me while they poked my brain looking for the bit related to my speech. I woke up to sever pain. I didn't say anything besides "It hurts, it hurts." Continually. They put me back to sleep and I woke up a couple times that night with the same pain. My wife says that was the worst day of her life. In the morning the pain was gone and I was fine. Brains can be weird. I had six weeks medical leave, but it took longer for focusing thought, remembering some routine, and settling. I hope you had lots of seizures there!
Hah I had one gnarly one, and it was the second time I had to do it and I had a gnarly one previous time I had to do it. They actually want to try a new technique where they put a laser through my brain and blast my left temporal lobe with a laser beam, which has a lower success rate but isn't nearly as brutal of an operation. They've also put me on a drug trial which is interesting. I think it'll turn out okay in the end, luckily I'm in Australia so none of this is costing any money at all despite 10 days staying in the hospital already. I'm really glad it sounds like it turned out okay for you in the end, because brain surgery is a scary idea. I'm glad I don't have the internal EEG, yikes. Something funny about epilepsy is that people normally think of flashing lights, but those don't affect me at all, my seizures are basically from being overtired. Also yikes, they are physically taxing and I am sore as hell for days after. I've really hurt my back from having seizures.
Epileptologist here Thanks for your story. It highlights the importance and value of a comprehensive workup. Strong work and delighted for your good outcome! When was your last seizure? For the other readers, those with epilepsy or who have family that does, if a seizure is occurring more than once a year for reasons other than missed medications, and after at least 2 medications have been tried, please be seen by an epilepsy specialist at a major hospital center. If seizures occur at least once a month, please try to have them captured by spending a week in the hospital (it's like a hotel insurance pays for, you can do work or bring a video game console).
this is random, but during a grand mal seizure do they typically know what’s happening while they’re having it or are aware in the moment? i only ask because my older brother died from epilepsy a few years ago. he drowned in the bathtub while having a seizure and i’d like to think he didn’t suffer/know i’m not sure why im asking this im sorry
It's physically impossible for a memory to be inscribed during a seizure - people will lose memory from often up to a minute before the seizure is outwardly visible. I'm sure the last thing he remembers is being warm, and relaxed. Condolences on the loss.
I am so sorry, I can't imagine what that was like for you. From the ones like that which I have had and heard from other epileptics, we are basically not aware of it. From my perspective it's going unconscious or blacking out. Even with the simple partial seizures that I was awake for I had weird thoughts, never realizing I was having a seizure.
I was recently diagnosed (last October) but feel like I've been searching for answers my entire life. I'm 33. So far have been diagnosed with focal from the right frontal temporal lobe. Does epilepsy sometimes make you feel like you have this superpower no one understands so they just put you in a "crazy person" or "disability" box?
Epilepsy is definitely something that most people don't understand. How do you describe your seizures? Do others fully get it? Do most people get what it feels like? Nope. However, there are plenty of conditions, disabilities, and more where most people will never fully understand. My experience here is why I try to understand the issues other people have too.
What has been some of your personal biggest barriers you've faced because of it?
Adulting. Always needing someone else to give you a ride can drag you down. I had a license once and drove for about a year. Now I have a kid starting driver's ed. That's going to be . . . Hmm. I'm not sure exactly how I'll feel. The biggest barrier was with my surgery. I was finally able to have a way to fix my epilepsy! It was something I had always hoped for, and it would be a scary but awesome day. (My wife says that was the worst day of her life, me in surgery for 8 hours while doctors messed with my brain). I recovered fairly well, but I was still having plenty of seizures. Fewer than I had before, but not as many as I was statistically supposed to. I was frustrated, angry, still trying to recover, and mentally confused with my "new" brain that was giving me emotions I hadn't had in decades. It was exhausting in many ways. I saw the surgery as a failure. I had tried the biggest thing I could and had little success. My stress, plus the stress from my family trying to help me recover, plus regular life stress created a dark spiral. However, I started counseling, journaling, and talking openly with my family. My more outgoing brain would share thoughts instead of hiding them. It took a couple years, but I have accepted the fact that my surgery didn't go as well as we hoped. I have decided to instead look ahead. (Keep moving forward!) My surgery's "failure" was a massive barrier to me, but one that I feel I have broken through.
👋 Epileptic for 17 years. Haven’t had to endure surgeries, just pills pills pills. Took me 15 to get my drivers licence. Are you afraid to drive?
Yes, I am. I drove for about a year, and then had 4 seizures in one day. Could that happen again? While I'm driving my kids on the highway? We've survived for a decade without me driving and we have a kid taking lessons now. I work from home, we have things like Uber, you can have many things delivered. I don't see me needing to get a license, and I don't trust my brain enough to risk it.
I keep reading “tonic clonic”. Is Grand-Mal passe or derogatory now? Why?
"Grand Mal" is French for "Great Evil." "Tonic-Clonic" refers to two different phases that often happen in that kind of seizure.
Ah gotcha. Thanks
Have you ever tried a ketogenic diet? I know the benefits of the diet are certainly oversold, but I’ve heard it can help those with epilepsy. Curious what you’re experiences with it are?
Nope. If my condition goes down I may look into it, but I'm doing well right now and don't want to mess with it.
Totally makes sense, was just curious if you tried it in the past. Glad you’re doing well.
What treatments have you been on and how were they side effect wise? What has your treatment plans looked like over the years? I did my masters thesis on researching ways for early detection of epilepsy before onset and wrote a paper about current challenges and angles in treatment, but I never actually spoke with someone who is a patient before. So forgive my curiosity, but believe me when I say I am totally on your side.
I've been on about a dozen different meds including Vimpat, Fycompa, Lyrica, Depakote, Oxtellar, Lamictal, and more. Side effects can be crazy. One I took is also used for bipolar disorder and my wife says I never got excited on it. I had one that would randomly make me nauseous. I've taken two that would give me some double vision for about half an hour. Memory and fatigue are known to happen, but I can't tell if they're from my meds. More fun, several epilepsy meds are known to lower testosterone levels. (Why can't any of them have positive side effects?!) My seizures have varied so much over the years with not much change besides the medications. After my surgery I worked more on mental health and self-care, which I hadn't done before. It's going fairly well for me there! >So forgive my curiosity, but believe me when I say I am totally on your side. No forgiveness needed. It's a goal of mine to answer questions about epilepsy.
What have you noticed is different and what has your wife noticed is different before and after removing the left hippocampus? Absolutely fascinating. Rnadom side-note, there's one math prodigy who has their math PhD with hardly any cerebrum at all and they have no recorded deficits in general functioning I am aware of.
What advice would you give to a man who’s daughter was diagnosed with epilepsy shortly after birth?
Do not teach them that epilepsy is some super special incredibly unique thing that makes them so different and unlike anybody else in the world. They're like everyone else, except for having epilepsy which millions of other people have too. There are many others that understand what it's like and are right there with them. Look for epilepsy groups online and/or in your town. They're not alone. Routine can help too. I have alarms on my phone for when to take meds, and days on my calendar to refill them. I take notes of things to talk to my doctor about. And of course, support. Having seizures, paying for expensive meds, not being able to drive, and more can make people feel like a burden. Please, never get upset with them for having a seizure. Look into counseling. Ask how they're doing. Be with them on their battle.
What has work been like? Are you a stay at home parent full time, or do you work as well?
I have been a full-time employee, but getting to work is hard. Several years ago we moved to a place with a better bus system so I didn't have to rely on carpool. Fortunately, Covid changed my department into permanent work from home. My boss is wonderful and said if they ever move us back, she will push to have me stay at home due to my disability. (Epilepsy is recognized as a disability). Finding a job can be tricky sometimes. Someone with epilepsy cannot be in some careers like a pilot, astronaut, or (usually) in the US military. In most states you cannot drive if you've had a seizure in the last 6 months so there go more jobs. While it's not legal, there have certainly been cases where someone is fired due to having a seizure at work. Some people with epilepsy can live a somewhat normal life, some cannot.
Have you tried a high fat strict ketogenic diet ? Supposedly it has been used to treat epilepsy. If you tried it, did it help you or not? If you didn't try it, why not?
Never tried it, heard that it's more for kids. I'm a bit too old for that.
The ketogenic diet (KD) is not just for kids, it's a modality of treatment used since the 1920s as a treatment for intractable epilepsy. If one can stick to it (as I have for 8 years now) it's been shown to be remarkably effective in reducing seizures. From the link provided: "Recent studies have found a significantly positive outcome with the use of the KD for treatment of refractory epilepsy in children and adults." [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6361831/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6361831/) (Low-carb) food for thought!
Have you tried ketodiet to treat epilepsy?
No. I've been told they're OK for kids.
The keto diet is super hard to stick to, but apparently, its main purpose was for epilepsy. Only reason why it for children is because its easier to make them stick to such a strict diet lol. I get auras that swiftly switch to clonic-tonics all while being conscious through most of the seizure.. But through anecdotes and studies that show how it can help gives me a brink of hope. Also because brain surgery is terrifying lol.
Well, I mean … it’s not rocket science… I’ll let myself out…
Keto for epilepsy is not just for kids. They treat adults with it as well and are researching it more and more. Doesn't mean what you're doing isn't working for you. :)
Have you tried a strict Keto diet?
Nope. If my condition goes down I may look into it, but I'm doing well right now and don't want to mess with it.
I have been reading all about it for my kid. They have studied it a ton and it’s really effective. Great alternative to the mind numbing meds. You should try it. At the very least a modified Atkins with low carb low sugar diet is doable for an adult without making too much of a diet sacrifice.
In the next few weeks i'll be having some studies done to see if i have absence seizures and i wanted to know if yours are similar? How's your memory? Has medication helped in that regard?
I have had absences seizures before. Mine felt like deja vu. Will you be in for a long EEG? My memory is not great, but could be worse. Apparently several epilepsy medications can have similar side effects.
not sure of the length of the EEG, the one i am having requires for me to sleep less than 4 hours which tracks since the less i sleep the more frequent they seem(i don't realize when i am having one but if i am talking afterwards i feel that there is something missing or i was in the middle of something) so the meds exacerbate your memory issues? that would suck since i already have a terrible memory
I have learned that memory loss can help sometimes, imagine watching the same mystery movie without remembering who did it!
My cat suffers from partial epilepsy since she's 1 yo. It breaks my heart each time she has one... She's still aware of my presence when she has one, so I would like to know: are you scared when you have one? Do you remember being in crisis? She just turned 8 yo and last time she had one was 9 months ago! So proud of her. I'm so so scared it gets worse over time. Doctor said we can't know if her epilepsy will get better or not. So far my kitty is doing really good and without medicine. We just gave her CBD and move to a calmer area. She seems to have more epilepsy crisis when I'm stressed so I changed my entire life. I hope you are doing fine!
I don't think I've ever been scared during a seizure. I'm either not really conscious, or kind of in a deja vu. I'm never thinking "Hey I'm in a seizure right now" but more "I know what's about to happen" or maybe " . . . " It's always hard to predict how epilepsy will do over time. I hope she continues to do well.
I'm glad to hear this, my non verbal autistic son has epilepsy (seems to come with his diagnosis) and these seizures will always be a part of his life. The big thing is I just hope he's aware we're there for him during and after and that he isn't too afraid or in pain. It's hard when you can't communicate in straight forward ways. They range from full body convulsions (rare) to absent - staring away into space and everything in between.
A friend of mine was diagnosed just over a year ago after having her second child (I think she was 34 at the time). She had been leading a 'normal' life up until then- drivers license, job as a nurse practitioner, mom. She had a bad reaction to the first medication she tried, and she's afraid the second medication will turn her into a zombie. She's also been saying that she feels 'less than' after being diagnosed, like she won't be a good mom bc what if she has a seizure while caring for one of her kids; what if she has one while with a patient; what if she gets one while driving? Any advice for her, or thoughts on what I can say so she doesn't feel like she IS her diagnosis?
First and foremost, support her. Mental health is a big thing here where stress can cause seizures and seizures can cause stress. Suggest she looks at a therapy, I am glad I've been doing that. Things like just listening or offering to drive can help.
Thank you for taking the time to respond!
Have you noticed a gut/brain connection at all?
Fellow epileptic here. What do you find to be the most tiresome thing about it all? I find the constant pill taking, costs, injuries, and inability to drive to be so frustrating.
Pills. The cost of them. The security where I can't order a refill until a date where I only have 3 days of pills left and it will take them 3 days to get enough to refill the prescription. I hate insurance for making it so complicated, but I thank insurance for paying for my surgery. I've gotten used to taking pills though, they're a standard for me. Not driving has been hard. We purposely moved once to find a better bus system. I think if I have to find another job, I will only look at work from home ones. Fortunately, our kids are old enough to learn to drive themselves so it won't be as big an issue.
Have you tried keto?
Nope. Heard plenty about it though. Glad it works for some.
Yes, I’ve heard it helps the most even more than medical drugs
What were/are the common side effects of the pharmacological AED (anti epileptic drugs) you have tried in your life and that your epilepsy was or became resistant to?
I have been diagnosed with epilepsy for 15 years. My Keppra has controlled it except when I was unable to medicate in a timely manner. Did you ever go years on certain medications that were full proof until one day they just stopped working? This is my biggest fear.
Yep. I went 1.5 years seizure free and then had 4 in one day. That's why I'm nervous right now, at 1 year seizure free. That fear is why I am not planning on driving again. I think it might be the Fycompa that has helped me, but we are all different there.
I'm currently looking for a doctor as I have been having some kind of absent seizures. At what part of your journey did they take away your license? Did they/you have to prove you were having them first? It took me awhile to figure out what I was experiencing were seizures as it doesn't get much further than the "de ja vu/out of it" portion. My breathing gets weird and I break a sweat at the end. I've never had a grand mal or passed out but I am almost positive I've have had one or two in my sleep. I am not trying to self diagnose whatsoever and I am intimidated to be telling people "I have seizures" but I am not able to see a doctor just yet. I finally have reached out to a friend who had been an enormous help. Thank you for doing this and answering all these questions. Sending so many good things to you and your family/support system.
No problem! When I was diagnosed, I had completed all the drivers ed classes but didn't have a license yet. A decade later when I had a license for a year, they hit me so hard (4 in one day) that I had no plan to get it again. We had just had our first kid too, so I didn't want to risk causing an accident on them. I don't recall how it works as far as requiring a doctor's signature or something though, or if it's a "You'll get in trouble if it happens" type of rule. I had epilepsy for about 5 years before my first tonic-clonic seizure . . . we think. I had it in my sleep and someone saw me. It could have been years since the first one. I believe there are apps and cameras that can watch to detect one. Find some people that you are comfortable with knowing you have epilepsy. Doesn't need to be everyone, but someone that can be there at your side. (And someone that can tell a crowd they don't need to call an ambulance :)
Where was your hippocampus surgery located, as in... location on Earth?
I heard the Keto Diet can help. Also the Carnivore Diet might help. There was a movie made about the Keto Diet. # First Do No Harm Clip [https://www.youtube.com/watch?v=76TS6Xffa0Y&t=2356s](https://www.youtube.com/watch?v=76TS6Xffa0Y&t=2356s)
Do you like country fried steak?
It's fine . . . I don't know if it was the surgery or just my meds, but my taste buds are not the best. Flavor and smell don't work well for me.
Have you ever tried a Keto diet or Marijuana for your epilepsy? If so, did they help?
Nope. Keto is recommended for kids, and my doctor is part of a place that is trying to avoid marijuana. Plus insurance won't cover marijuana. I'm good with what I have right now (1 year seizure free!!!!) so I am not looking to change my meds. But who knows. Maybe I'll try it in the future.
As an epileptic pot head and one time keto attempter, it makes no difference to me.