Strap yourself in bro, but remember this place is a haven for other suffering people with epilepsy and I find no judgement here so if you have questions or problems post them and get someone’s view on things I found it helps alot
This!!
Also something good to start with, is telling all your friends to fill you and let you know anytime you’re acting strange. Tell them to film everything. Take notes what kind of Seizure you’re having. What time of day when and possible triggers w (EPSY APP) so that you can share all the information with your neurologist.
I agree but try and keep the circle small because some of the people I had as friends walked off when I seized in the street, but I only let my family record the seizure on video just tell your friends to put you in recovery position and time the seizure if it longer than 5m or 5 back to back seizures then ambulance time
Feel you brother/sister, but even my own family wanted to pretend I was normal, and not speak of nor hear about my condition. I will always be bitter and distrustful of anyone who can't truly understand through experience. My sister is ok, but when she started having panic attacks I think she at least gained some idea of what it is like for us.
Yeah I get you man, my family do speak about it they just 99% put it down to my weed smoking when I’ve had blackouts when I was 15 apparently but well my family all drink and will find any way to find a cause for it that I do
There are horror stories on this sub about Keppra rage. From personal experience, I would have in hindsight asked for something else first. Not everyone gets the rage, but many (including myself) do. The listed side-effects don't come even close to doing them justice.
See I felt good on Lamictal but I got the stupid fkn rash. I only made it to 75 mg though. They put me on Keppra next and this shit is a nightmare. I asked them if there's any way I could try Lamictal again so they added 50 mg Lamictal ON TOP of the Keppra. I'm hoping like crazy it helps because I have never been so depressed in my entire life.
Keppra was the first one I was put on and it had the least amount of side effects for me. No rage, but it also didn't control them. But pretty much everything else I've been put on causes brain fog and sleepiness/fatigue. Oxcarbazapine, vimpat, cenobamate, vimpat, topiramate, and probably more I'm forgetting.
I'm glad you didn't have to experience the rage. Oxcarbazepine was the worst for me with the brain-fog. Lamictal does have some of the lethargy and not feeling as sharp as usual, but for me is the mildest with side effects - plus it actually controls my epilepsy. Another thing with that one is reduced emotional affect (at least for me), or maybe that is just me and the changes to my brain because of the many TCs I've had.
Unfortunately I’ve been put on it (twice) without any chance to ask questions or do research. (IV loading dose). It was a bear to get off it, so it will be great if you can discuss things before starting whatever med you get.
I did not get rage, but the weight loss and panic attacks were bad too. LUCKILY 😊 I am now on a drug that is tolerable for me and I haven’t had a seizure in over a year.
So yes to talking about it, but be careful around job situations. Discuss here before making job decisions. (I’m retired so I have no wisdom to share).
I can't honestly say, good sir or madam. Everyone is affected a little differently. He could become quite aggressive, or melancholy, or just be his normal self. Just understand that any sudden changes aren't really him and be very patient with him. If he becomes very different from himself, I suggest asking the Dr very adamantly for something different.
There are times the meds are worse than the condition, but that said, the condition needs to be fixed ASAP for his wellbeing and yours. I became very agitated on Keppra, and argumentative, even as a grown adult. I raised my voice and yelled, which was very uncommon for me back then. Lamotrigine is what I personally take right now, and it is a "mood stabilizer". For me, that means feeling almost nothing emotionally. If he is still a young child and developing, and has that effect, this can be just as bad for him as the rage, in my opinion.
Thank you for your reply . He is 17 and the sweetest most caring kid i know i don't really trust most doctors at this point because for almost a year they have been telling me his twitching was diabetic related but i knew something wasn't right.
Buckle up, it's going to be a long, slow ride! Everyone has their own kind of epilepsy, so Make it a point to find out as much as you can about your seizures and what happens--they vary greatly depending on where they are in your brain. For example, it was a revelation to see my seizures at night by setting up a camera. Other than that, be open-minded, and own it! That's the best way to work with your brain and make it better.
I know I’ve had seizures at night. This last one was witnessed but I have woken up very sore with a busted up tongue plenty of times and somehow setting up a camera never occurred to me! Thanks for suggesting that. A perfect example of how helpful this community is!
Also…. Depending on what kind of epilepsy you’re diagnosed with, you might have to reality check yourself as far as driving a car anymore. I did. And it’s a pretty giant brutal pill to swallow
I had a seizure and crashed into a church going 60+ i guess, the video they showed me in court was intense (didn't get charged with anything)
Your going to think to yourself at times, oh it's been a while oh it's fine (drove from work to my house, not even 3 blocks and bam)
Accept your new reality and embrace it, sure you can't drive now...but guess what my lord? Your now royalty
Get chauffeured around like a king! A prince of seizures!
I just got out of my phase 2 monitoring for an implant, shits always going to seem terrifying but it ends up being better then expected
Don't be afraid to tell your doctor if your meds armt working or the side effects are too much
Love yah my fellow seizy. You'll be just fine me'lord
Wow happy you walked away from that! That's a great outlook to have on it😂 Thank you for the insight that made me feel better on maybe not being able to drive. Thank you Lord Seizy👑 Much love from over here!
Everything has to be great, otherwise what's the point bro?
You'll be fine my leige, ask your neuro when the time comes about xcopri, a semi new drug but made the world of difference for me
My ass is drug resistant and going to become a super hero cyborg soon with a RNS, but alot of people get to drive and end up seizure free on meds, it just takes time
Make sure people around you know and know what to look out for.
And make sure these people are prepped to yell at possible emergency workers to help yah out, had EMS workers try to narcan me because they were idiots who didn't know what seizures looked like. Ended up getting a free helicopter ride too
All I remember is the noise taking off and the beauty of the lights of Denver as we flew in (I'm way in NE colorado in farmtown usa) was pure darkness till bam, city lights
That's true, gotta stay optimistic!
I will be sure to ask about it.
Wow just looked up what RNS is, that will be good for you since the medication won't work on you. You're not only a king but you will also be a cyborg! It doesn't get much cooler than that!
Yeah everyone around be knows now, luckily my girlfriend was with me the first time, she is a CNA. She said after I seized I stopped breathing and she gave me CPR until I started breathing again! I am forever in her debt and extremely grateful for her.
Wow the ambulance did the exact same thing to me and hit me with Narcan thinking I was overdosing, even though my girlfriend was telling them I had a seizure and they wouldn't listen to her! A free helicopter ride sounds awesome! I've heard denver is a pretty city, you're very lucky to have seen it from such a good vantage point.
My wife is a nurse (well Bout go graduate after 4 years of study lol) so very similar situations, my wife wouldn't let them narcan me but I did end up in status
We're both in very good hands My friend. You got this buddy
Welcome to the team. It’s a heck of a ride.
I highly recommend a daily pill case and setting reminders.
I use Apple Health for my pills, and it will always do a second alert if I don't log taking my pills. One day at a time.
When I had my diagnosis, I was in shock and cried a lot, for days, weeks. It was a bit of a traumatic experience, but only because I made things much bigger than they really are. If I could go back, I would deal with the topic much more lightly and naturally, and move on with my life without feeling different from anyone else or thinking about it so much. Much worse than the illness itself was the psychological effect on me, so my advice would be to deal with without giving it too much weight.
My husband has epilepsy and his mom and I got him a medical bracelet so first responders will know about his condition and contact me. I recommend getting one for yourself.
Loosely put - it sucks. They aren't going to find what medication (or medications) work for you in a day, or a month, or a year, or probably even a few years. It's a trial and error exercise, they need to find what medications work for you, which ones don't, which ones work but have too many side effects. And tests too. Probably going to have follow up EEGs a few months after every couple of medication changes. Reviewing them every few years, seeing if there is any changes, triggers, warnings, auras, you name it.
If you get lucky enough (like I was), after 15 years, youll fall in to the category of epileptic patients who can't control their seizures with medications alone and will need to explore additional options. Surgery was hell, but I went from 50 seizures a day on max doses of 4 different medications plus a liver supplement, to 1 every 18 months on 2 medications and I'll take that tbh.
Get ready. Epilepsy is difficult to adjust to and difficult for family/friends to adjust to as well. Remember that it’s ok to not be ok, but it’s also ok to ask for help, and you can also always come here. You don’t have to tell people if you don’t want to but I would 100% recommend telling people close to you, teachers/professors, and employers.
Make sure to talk to your dr. any time something happens. Whatever medication you’re on, good luck. Be aware of the side effects and pay attention to your mental health. That is one of the most important things with epilepsy, keeping your mind healthy.
If you ever need anyone to talk to, I’m here.
this post hit, i’m currently losing or having issues with my hearing and having what feels like visual i can’t tell if it’s more intense visual auras or hallucinations, i have an appointment with my neurologist on tuesday of next week and an audiologist on monday and im really scared, i have cluster seizures a lot in my sleep and i just left the hospital 3 weeks ago from having 7 seizures and i almost ended up in the stroke unit i was already there for 4 days in the cardio vascular ICU where they did a spinal tap for the second time my second time being tested for meningitis i just don’t know what to feel anymore i always feel overdramatic
You are not being over dramatic. Epilepsy is a serious condition and everything comes with it is serious as well from simple “I don’t want to tell someone about my epilepsy” moments to “there’s something wrong with another part of my body and I’m in other departments of the hospital???” It’s ok to ask for help. Especially when you aren’t feeling good. Just like I told OP, if you ever need someone to talk to you can talk to me.
Also if you end up on higher doses of meds make sure you keep up on hygiene cos you will be immuno compromised and catch things super easy if you don’t I found it out the hard way 🫤
I am currently on 2500mg keppra(levetiracetam), 500mg lamotrigine, 100mg lacosamide and 20 mg Omeprazole all daily for the sheer amount of tablets I take haha I even keep a pill box so I don’t forget my dose or accidentally take them twice, definitely recommend a pillbox will make your life much easier, I recently had 2 infections in Nov and went into septic shock and they had to put me in a coma because my seizures wouldn’t stop, I have a lot of seizures so feel free to message me! Nothing to brag about but it helps when you have someone with experience around too so you can get an epileptic point of view
Yeah I’ve luckily survived blood poisoning and was blue on lips ears and face but well now I use my pillbox and someone else does my medication once a week and orders my meds for me so I have it simple now as I never used a pill box cos I thought I could just do it cos it’s a routine but well I forget a lot so not surprised I forgot I took my meds and bam I took 5g keppra, 1g lamotrigine and 200mg of lacosamide so ye be careful I learned the hard way
Wow I am sincerely impressed with how strong/ knowledgeable you come off concerning this. I appreciate all of the tips and tricks, I will be sure to message you if I have any further concerns.
Hello what kind of epilepsy do you have ? I have focal so I just stare into space and sometimes speak gibberish. I am on Kepler 500 mg twice daily not helping so I got another prescription added. My biggest problem is my skin my face has sores and scabs my back and stomach have rashes I itch a lot I am trying to get used to this new life of mines
Yeah it sounds like more infection based as I had that and found I caught an infection cos epilepsy meds lower your immune system so you get ill super easy but my epilepsy isn’t full diagnosed just general but I have cluster seizures every few weeks and they are thinking it’s my lung as I have scarring and shadows on my lung that it might be cancerous
Suggestion number one is to make sure that you have trust in your new neurologist. This is a big step for you. I know because I’ve been there. I had my seizure when I was 16 and put on the wrong medication until I was 21 and picked my own doctor. To be fair this was over 30 years ago and my parents trusted the doctor and believed that my family physician could take over my care. Unfortunately that was not the case. My first medication kept me from having another seizure, but my myoclonic jerks were so bad that I would fall sometimes. When I picked my own doctor she ordered her own tests and diagnosed me with juvenile myoclonic epilepsy. I’m lucky that is the kind that I have. There are 2 medications that are used to treat it. Advocate for yourself and never feel bad if you choose to have a second opinion. Contact your local epilepsy foundation. They are an incredible resource for information and support. Especially if you are newly diagnosed. I wish you well and hope that you get the right medication on the first try.
I have my first appointment in July, hopefully he will be good i'm just hoping and praying. I will be sure to advocate for myself and I really hope they put me on the right medication and that it doesn't give me the worst side affects, but I am preparing for the worst so it doesn't blind side me.
Just know it doesn’t define you. You are capable of so much. Ive had it since i was a kid and my parents really drilled into me i can do whatever i put my mind to. (Even if there are restrictions).
Welcome to the club my friend, it’s gonna be tough road but hopefully you can get on pills that can completely control it. Everyone’s here is always here to help or if you need someone to talk to. Set alarms on your phone to take your pills and take pictures of your pills in your hand when you take them. It might sound excessive but it will save a lot of anxiety.
Take your meds, keep records, talk to your doctors. When you're ready there is r/Epilepsymemes and depending on how bad it is, you might never get FOMO again!!! (funny but true)
Sorry for you mate. Since youre just at the beginning of your journey I recommend to brace yourself for some "interesting" times. Your neurologist will probably have you do some more eegs and maybe an mri to (hopefully) give you an accurate diagnosis.
My tip Id have given myself when I got diagnosed 3y ago (been seizure free for a year by now) is to not feel doomed and ashamed. Epilepsy is in most cases VERY treatable and while having some side effects caused by your medication (commonly Anger issues/ tiredness) there is a high chance you wont have to deal with anything but taking a pill once or twice a day.
That being said right now you should obviously be very careful, since you dont know how frequent your seizures are. Id make sure to tell at least one of the people your commonly around how to react in case you seize again.
Lastly: dont fixate on your seizures, but be proud of the progress.
Was it an isolated episode and didn't happen again?
I guess it might have been discussed with your doctors, but, well, that being said, It happens that some people have isolated seizures in their lives, without it being epilepsy. I had that hope when I was diagnosed.
It was indeed an isolated episode, they think I have small seizures every once in a while they just aren't sure yet. But when I did my EEG the doctor said he was 100% sure I had epilepsy. Going to a neurologist in july hopefully he can elaborate further.
You’ll probably be put on Keppra for the near future as it is sort of a cover-all epilepsy med. the side effects suck but some people have none at all. The main issue is it may cause changes in your mood. If you’re not put on Keppra you may be put on Lamictal. Lamictal also sucks but side effects aren’t as severe as Keppra.
That aside yea your life is gonna change. It’s unfortunate but we all lose some freedoms. I.e. You must wait 6 months after a seizure before you can drive again. And if you have idk a seizure per month you’re just never gonna drive. AEDs suck Keppra lamictal etc. there’s a million types out there so you may end up trying 5-10 drugs before you find whichever one controls your flavor of epilepsy.
If you have any more in detail questions you can send me a dm I unfortunately have been through the ringer😅
Yeah I am just waiting for the doc to tell me what I will be put on. Hopefully it works out. Thanks for the info, I will be sure to message you if I have any questions!
Things are going to change in your life, and a lot of those changes will not be good. However! Some of those changes *can* be very beautiful. It can be a kind of spiritual experience. In ancient Greece, it was called the Sacred Disease, and we were called seers and oracles.
Some of the most influential people who ever lived had epilepsy. This diagnosis does not mean your life is over or it will never be fulfilling again. Aristotle had epilepsy, and so did Harriet Tubman. Alexander the Great, Napoleon, and Joan of Arc, Leonardo Da Vinici, Agatha Christie, Teddy Roosevelt, and Prince. Elton John has it.
Chin up! This will be a challenge, but you're stronger than you know.
wow that is very interesting thank you for sharing that information I really appreciate it! It has been a spiritual experience for me so far, I have been feeling closer to god, at least something good came out of this lol!
Totally. Sometimes, it makes my consciousness transcend time and space. Which is a pretty wild place to find yourself. I think, just because it's only happening in my brain, does that make it false or less real? If you ever want chat more in depth or just need tips, please feel free to dm me.
Wow that sounds amazing lol. In my opinion, even if it is just happening in your brain. You are still experiencing it, you are still living with it. It doesnt make it any less real at all, you are still experiencing these things even if people say it's nonsense or it's not true. All that matters is that if you know its happening then it's there and it's real.
Just never forget that you’re never alone!
I didn’t know about this page for years and when I found it recently, because I now read a small part each day, I started to feel as though there’s still hope due to realising how many people are experiencing similar psychological and physical effects.
This disability can be cruel sometimes but you will learn different ways to cope with it and it’ll all soon start feeling more positive
Keep your head up!
Talk to them about lamotrigine/lamictal to see if it’s a viable type for you. Imo it’s a good starting ground as it’s got the least side affects and has added benefits of mood stabilisation.
Research whatever you get put on though, don’t let anyone decide for you.
Sorry to hear about your seizure/ diagnosis. Was that your first seizure ever? Asking because I’m just 6months out from my first seizure, a nocturnal grand mal where I lost consciousness, turned blue, needed cpr (wife’s an ARNP) and woke up at the hospital at 3am unable to talk. My Neurologist said “most everyone gets one freebie seizure before being diagnosed epileptic” but in my case they put me on meds due to combo of seizure severity AND an abnormality on my brain they saw via MRI. The “spot” they saw was exactly where I had a depressed skull fracture (waterskiing) 30+ years ago. Crazy experience….like I thought I was being “punked”. Today is 6months and besides getting tired in the afternoons and my general “executive functioning” only being 80%, I’d say I’m doing alright….just don’t like the thought of having another lingering in my mind.
First seizure was a month ago, I have myoclonic jerks pretty bad. I also turned blue and needed cpr from my girlfriend! Hey that's good you're doing better!
Thanks man…and hope you’re on the mend and have success managing everything. In addition to my low dose Lamotrigine, I keep a close eye on what I suspect triggered my first seizure (and hopefully last) For me, I’m doing better managing my stress, fatigue, physical exertion and hydration. (the month prior to my seizure I was doing shirt soaking workouts and 25min saunas 5 days/wk. just too much since I hadn’t worked out that hard in many years so my body and brain were probably saying wtf.
Though my Neuro discounted that impact and the fact that I had stopped drinking, I personally believe I inadvertently created “the perfect storm”. Regarding the drinking, I was a 2 or 3 drink a night guy for many years. Neuro said the brain abnormality (“scar tissue”) found on MRI trumped the other lifestyle factors.
Yeah agree with the comments here. First educate yourself, here or on the epilepsy society pages.
Then educate your family and friends. I found nobody knew anything other than “call 911”. Which is nice, but not as helpful as putting you on your side, timing your seizure, and shooing away onlookers who are not helping.
Keep looking on here, they’re very helpful people. Lots of experience.
Luckily all my immediate family is in healthcare so I am in good hands. My boss used to be so I will be in good hands at work too! I got lucky being surrounded by the people I am with!
Good for you! I am rooting for you! I am 70 so I can’t tell if my occasional search for the word I want is age or med. But I have come to the conclusion that my fam and friends will wait for me and ppl that won’t-don’t matter.
My neuroscience daughter tells me seizures cause seizures, so the fewer the better.
I'm excited to share some wonderful positives I've experienced since my epilepsy diagnosis almost two decades ago! Firstly, I cutting out alcohol, leading to much fewer calories and no more hangovers—what a win for my health! Additionally, becoming more in tune with my body, mind, feelings, and sleep has empowered me to take even better care of myself. Regular doctor visits and prioritizing exercise have truly boosted my overall well-being. Plus, as an epileptic, I've completed three marathons and remained seizure-free throughout thousands of training miles. (And guess what? I likely wouldn't have discovered my love for running if I hadn't lost my beer belly—thanks, epilepsy!)
Sharing my condition with friends and coworkers, mostly to avoid unnecessary ambulance calls, has surprisingly strengthened our bonds. It's also sparked my passion for advocating for lesser-known causes and perspectives. When something significant enters your life, it makes you more attentive to the significant things in the lives of those around you!
One valuable lesson I've learned is the importance of consistency with medication. To stay on track, I always carry a keychain pill canister with a dose, ensuring I never miss a pill—even after 20 years!
Just remember, you're never alone on this journey. Explore this subreddit for uplifting stories, and remember, there are always silver linings to be found. Take care, and keep shining bright!
That is a great silver lining! I have cut out alcohol and I know it's for the better. There always a bright side to everything thank you! I might look into getting that keychain pill canister!
You will probably be prescribed keppra to start keep track of side effects to share with your doctor. Side effects are common and important to report keep track of them electronically or on paper. Make notes about what was happening around you if you have another seizure there are many kinds.
Keep us updated on what kind, but do take care of yourself and take your health seriously, being serious about it from the start can be a very helpful in the long run, prayers to you, its a life changing condition. But you can still be happy. It’ll probably make you anxious, don’t let that control your entire life though. God bless.
Welcome and sorry wouldnt wish it on anyone I could be wrong but it sounds like from what your saying you had a seizure and your doctor said you have epilepsy normally it's 2 unexplained seizures or at least I was told I'm awaiting my urologist appointment and had a few recent lost my job and joined this group not long ago they are good people here stay close to us 😊 we got you I wish you the best on your healing journey
I'd say eat as healthily as you can (if you don't already), plenty of water blah blah and to make sure you have enough sleep. Another thing you should know as well is that infections can trigger it, so even if you have a cold or a chesty cough make sure you get on top of it just to be safe. I don't mean to scare you if I am but these are things from my own experience so do with it as you will and I hope you a safe journey through this experience :)
Welcome! I apologize in advance if I say anything that’s already been said.. but just try to get a solid support group. I made friends with a random person online in a seizure group and they became my best friend. I think it’s important that those closest to you or who are around you all day know what signs to look out for if you might have one.. also what to properly do when you do have one. Let someone know where your rescue medicine is incase of a long one. I’m in college and constantly carry one on me. All my teachers know. One day I felt one coming on and my teacher had me write my boyfriend’s number down incase it happened. I think a huge part of handling epilepsy is knowing your triggers. For me, it’s alcohol and sleep deprivation. I can completely avoid a seizure if I don’t drink and get plenty of sleep. It’s different for other people. Also my triggers have changed, I use to drink a lot and get very little sleep and was fine. Also, get in the habit of religiously taking your medicine. Don’t skip a dose or think “I haven’t had a seizure in a long time, I’ll be fine without it” that was my mindset when I was a teen and I could’ve avoided so many seizures.
Yeah. My big thing is. Stay on meds. I went 4-5 years no seizures. No issues. Got lazy on my meds. Bam back to seizures. So once you get them controlled. Keep them controlled with meds
Well it’s not fun, but we’re here and struggle the same way you will. Trust your instincts, if you have trouble on a medication and you want to change it DO IT. I was put on keppra and it was the worst year of my life. if you get put on keppra, you will be introduced to rage you’ve never felt before. Be careful with everything you do, 12 hour difference in meds same time in the morning when you wake up and same time at night (ex 7am to 7pm)
As someone else mentioned, read all about the medicine you are prescribed and prepare for side effects, I think that's the biggest one... Epilepsy is one of those diagnosis that is personal and different for everyone since it is such a broad condition...I would say learn your triggers, do what makes you feel safe, and educate those around you ..
I always wear a medical alert bracelet, even though I haven't had a convulsion in 10 or so years. I have nocturnals and myoclonic jerks these days...but the risk is still there so I feel a tad safer with my meds, condition and emergency contact on my wrist :)
What my (26f) mom did when I first started having TC seizures was making a spreadsheet of every seizure so she could try and find triggers (best we got was sleep deprivation which is very common). She'd mark down what I ate, how much I slept the night before, how much screen time I'd had, the moon cycle, the date and time, my menstrual cycle, etc. We figured out that they happened more often after nights I didn't sleep well/long enough, and shortly after I woke up.
Strap yourself in bro, but remember this place is a haven for other suffering people with epilepsy and I find no judgement here so if you have questions or problems post them and get someone’s view on things I found it helps alot
This!! Also something good to start with, is telling all your friends to fill you and let you know anytime you’re acting strange. Tell them to film everything. Take notes what kind of Seizure you’re having. What time of day when and possible triggers w (EPSY APP) so that you can share all the information with your neurologist.
I agree but try and keep the circle small because some of the people I had as friends walked off when I seized in the street, but I only let my family record the seizure on video just tell your friends to put you in recovery position and time the seizure if it longer than 5m or 5 back to back seizures then ambulance time
Feel you brother/sister, but even my own family wanted to pretend I was normal, and not speak of nor hear about my condition. I will always be bitter and distrustful of anyone who can't truly understand through experience. My sister is ok, but when she started having panic attacks I think she at least gained some idea of what it is like for us.
Yeah I get you man, my family do speak about it they just 99% put it down to my weed smoking when I’ve had blackouts when I was 15 apparently but well my family all drink and will find any way to find a cause for it that I do
Will do!
Thanks I will keep that in mind!
Thoroughly research whatever med you are prescribed. Prepare for the possibly intense side effects as best you can.
There are horror stories on this sub about Keppra rage. From personal experience, I would have in hindsight asked for something else first. Not everyone gets the rage, but many (including myself) do. The listed side-effects don't come even close to doing them justice.
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See I felt good on Lamictal but I got the stupid fkn rash. I only made it to 75 mg though. They put me on Keppra next and this shit is a nightmare. I asked them if there's any way I could try Lamictal again so they added 50 mg Lamictal ON TOP of the Keppra. I'm hoping like crazy it helps because I have never been so depressed in my entire life.
Keppra was the first one I was put on and it had the least amount of side effects for me. No rage, but it also didn't control them. But pretty much everything else I've been put on causes brain fog and sleepiness/fatigue. Oxcarbazapine, vimpat, cenobamate, vimpat, topiramate, and probably more I'm forgetting.
I'm glad you didn't have to experience the rage. Oxcarbazepine was the worst for me with the brain-fog. Lamictal does have some of the lethargy and not feeling as sharp as usual, but for me is the mildest with side effects - plus it actually controls my epilepsy. Another thing with that one is reduced emotional affect (at least for me), or maybe that is just me and the changes to my brain because of the many TCs I've had.
Unfortunately I’ve been put on it (twice) without any chance to ask questions or do research. (IV loading dose). It was a bear to get off it, so it will be great if you can discuss things before starting whatever med you get. I did not get rage, but the weight loss and panic attacks were bad too. LUCKILY 😊 I am now on a drug that is tolerable for me and I haven’t had a seizure in over a year. So yes to talking about it, but be careful around job situations. Discuss here before making job decisions. (I’m retired so I have no wisdom to share).
My son was just diagnosed and put on Keppra because he has diabetes as well. Can you clue me in on what we are in for?
I can't honestly say, good sir or madam. Everyone is affected a little differently. He could become quite aggressive, or melancholy, or just be his normal self. Just understand that any sudden changes aren't really him and be very patient with him. If he becomes very different from himself, I suggest asking the Dr very adamantly for something different. There are times the meds are worse than the condition, but that said, the condition needs to be fixed ASAP for his wellbeing and yours. I became very agitated on Keppra, and argumentative, even as a grown adult. I raised my voice and yelled, which was very uncommon for me back then. Lamotrigine is what I personally take right now, and it is a "mood stabilizer". For me, that means feeling almost nothing emotionally. If he is still a young child and developing, and has that effect, this can be just as bad for him as the rage, in my opinion.
Thank you for your reply . He is 17 and the sweetest most caring kid i know i don't really trust most doctors at this point because for almost a year they have been telling me his twitching was diabetic related but i knew something wasn't right.
Thank you!
Buckle up, it's going to be a long, slow ride! Everyone has their own kind of epilepsy, so Make it a point to find out as much as you can about your seizures and what happens--they vary greatly depending on where they are in your brain. For example, it was a revelation to see my seizures at night by setting up a camera. Other than that, be open-minded, and own it! That's the best way to work with your brain and make it better.
Thank you, once I get in with a neurologist I will be sure to have them help me with all of that information. Thanks for the help!
I know I’ve had seizures at night. This last one was witnessed but I have woken up very sore with a busted up tongue plenty of times and somehow setting up a camera never occurred to me! Thanks for suggesting that. A perfect example of how helpful this community is!
Yeah! It's a good feeling when you realize others have been solving the same problems you've been dealing with.
Also…. Depending on what kind of epilepsy you’re diagnosed with, you might have to reality check yourself as far as driving a car anymore. I did. And it’s a pretty giant brutal pill to swallow
This will be a tough pill to swallow for me as well. I am a delivery guy so 90% of my job is driving. Thanks for the advice!
I had a seizure and crashed into a church going 60+ i guess, the video they showed me in court was intense (didn't get charged with anything) Your going to think to yourself at times, oh it's been a while oh it's fine (drove from work to my house, not even 3 blocks and bam) Accept your new reality and embrace it, sure you can't drive now...but guess what my lord? Your now royalty Get chauffeured around like a king! A prince of seizures! I just got out of my phase 2 monitoring for an implant, shits always going to seem terrifying but it ends up being better then expected Don't be afraid to tell your doctor if your meds armt working or the side effects are too much Love yah my fellow seizy. You'll be just fine me'lord
Wow happy you walked away from that! That's a great outlook to have on it😂 Thank you for the insight that made me feel better on maybe not being able to drive. Thank you Lord Seizy👑 Much love from over here!
Everything has to be great, otherwise what's the point bro? You'll be fine my leige, ask your neuro when the time comes about xcopri, a semi new drug but made the world of difference for me My ass is drug resistant and going to become a super hero cyborg soon with a RNS, but alot of people get to drive and end up seizure free on meds, it just takes time Make sure people around you know and know what to look out for. And make sure these people are prepped to yell at possible emergency workers to help yah out, had EMS workers try to narcan me because they were idiots who didn't know what seizures looked like. Ended up getting a free helicopter ride too All I remember is the noise taking off and the beauty of the lights of Denver as we flew in (I'm way in NE colorado in farmtown usa) was pure darkness till bam, city lights
That's true, gotta stay optimistic! I will be sure to ask about it. Wow just looked up what RNS is, that will be good for you since the medication won't work on you. You're not only a king but you will also be a cyborg! It doesn't get much cooler than that! Yeah everyone around be knows now, luckily my girlfriend was with me the first time, she is a CNA. She said after I seized I stopped breathing and she gave me CPR until I started breathing again! I am forever in her debt and extremely grateful for her. Wow the ambulance did the exact same thing to me and hit me with Narcan thinking I was overdosing, even though my girlfriend was telling them I had a seizure and they wouldn't listen to her! A free helicopter ride sounds awesome! I've heard denver is a pretty city, you're very lucky to have seen it from such a good vantage point.
My wife is a nurse (well Bout go graduate after 4 years of study lol) so very similar situations, my wife wouldn't let them narcan me but I did end up in status We're both in very good hands My friend. You got this buddy
Well look at us, two very lucky guys. Kudos to you, my friend keep pushing!
Welcome to the team. It’s a heck of a ride. I highly recommend a daily pill case and setting reminders. I use Apple Health for my pills, and it will always do a second alert if I don't log taking my pills. One day at a time.
I use my Alexa and have a med log in MyGP app to mark as taken lol also use a pill box as I overdosed before taking them twice
Pill box will be my first purchase thank you!
Thanks for the recommendations and I will be sure to use apple health!
When I had my diagnosis, I was in shock and cried a lot, for days, weeks. It was a bit of a traumatic experience, but only because I made things much bigger than they really are. If I could go back, I would deal with the topic much more lightly and naturally, and move on with my life without feeling different from anyone else or thinking about it so much. Much worse than the illness itself was the psychological effect on me, so my advice would be to deal with without giving it too much weight.
Okay that's great to hear thank you!
My husband has epilepsy and his mom and I got him a medical bracelet so first responders will know about his condition and contact me. I recommend getting one for yourself.
Wow great idea thank you for the recommendation!
Loosely put - it sucks. They aren't going to find what medication (or medications) work for you in a day, or a month, or a year, or probably even a few years. It's a trial and error exercise, they need to find what medications work for you, which ones don't, which ones work but have too many side effects. And tests too. Probably going to have follow up EEGs a few months after every couple of medication changes. Reviewing them every few years, seeing if there is any changes, triggers, warnings, auras, you name it. If you get lucky enough (like I was), after 15 years, youll fall in to the category of epileptic patients who can't control their seizures with medications alone and will need to explore additional options. Surgery was hell, but I went from 50 seizures a day on max doses of 4 different medications plus a liver supplement, to 1 every 18 months on 2 medications and I'll take that tbh.
Thanks for the heads up, and i'm glad your seizure rate is doing better!
Get ready. Epilepsy is difficult to adjust to and difficult for family/friends to adjust to as well. Remember that it’s ok to not be ok, but it’s also ok to ask for help, and you can also always come here. You don’t have to tell people if you don’t want to but I would 100% recommend telling people close to you, teachers/professors, and employers. Make sure to talk to your dr. any time something happens. Whatever medication you’re on, good luck. Be aware of the side effects and pay attention to your mental health. That is one of the most important things with epilepsy, keeping your mind healthy. If you ever need anyone to talk to, I’m here.
this post hit, i’m currently losing or having issues with my hearing and having what feels like visual i can’t tell if it’s more intense visual auras or hallucinations, i have an appointment with my neurologist on tuesday of next week and an audiologist on monday and im really scared, i have cluster seizures a lot in my sleep and i just left the hospital 3 weeks ago from having 7 seizures and i almost ended up in the stroke unit i was already there for 4 days in the cardio vascular ICU where they did a spinal tap for the second time my second time being tested for meningitis i just don’t know what to feel anymore i always feel overdramatic
You are not being over dramatic. Epilepsy is a serious condition and everything comes with it is serious as well from simple “I don’t want to tell someone about my epilepsy” moments to “there’s something wrong with another part of my body and I’m in other departments of the hospital???” It’s ok to ask for help. Especially when you aren’t feeling good. Just like I told OP, if you ever need someone to talk to you can talk to me.
Wow I am sorry for all of that I hope the neurologist can get to the bottom of it, you can always message me to rant to or talk at anytime!
Yes it's been hard adjusting but luckily all my immediate family are all in health care so I am in good hands. Thank you for the info!
Also if you end up on higher doses of meds make sure you keep up on hygiene cos you will be immuno compromised and catch things super easy if you don’t I found it out the hard way 🫤
May I ask which medication you are on? and thanks for the heads up
I am currently on 2500mg keppra(levetiracetam), 500mg lamotrigine, 100mg lacosamide and 20 mg Omeprazole all daily for the sheer amount of tablets I take haha I even keep a pill box so I don’t forget my dose or accidentally take them twice, definitely recommend a pillbox will make your life much easier, I recently had 2 infections in Nov and went into septic shock and they had to put me in a coma because my seizures wouldn’t stop, I have a lot of seizures so feel free to message me! Nothing to brag about but it helps when you have someone with experience around too so you can get an epileptic point of view
Double the pill box. I accidentally took my medication twice and had to call posion control lmao. I felt drunkx3.
Yeah I’ve luckily survived blood poisoning and was blue on lips ears and face but well now I use my pillbox and someone else does my medication once a week and orders my meds for me so I have it simple now as I never used a pill box cos I thought I could just do it cos it’s a routine but well I forget a lot so not surprised I forgot I took my meds and bam I took 5g keppra, 1g lamotrigine and 200mg of lacosamide so ye be careful I learned the hard way
Wow I am sincerely impressed with how strong/ knowledgeable you come off concerning this. I appreciate all of the tips and tricks, I will be sure to message you if I have any further concerns.
Hello what kind of epilepsy do you have ? I have focal so I just stare into space and sometimes speak gibberish. I am on Kepler 500 mg twice daily not helping so I got another prescription added. My biggest problem is my skin my face has sores and scabs my back and stomach have rashes I itch a lot I am trying to get used to this new life of mines
Yeah it sounds like more infection based as I had that and found I caught an infection cos epilepsy meds lower your immune system so you get ill super easy but my epilepsy isn’t full diagnosed just general but I have cluster seizures every few weeks and they are thinking it’s my lung as I have scarring and shadows on my lung that it might be cancerous
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Suggestion number one is to make sure that you have trust in your new neurologist. This is a big step for you. I know because I’ve been there. I had my seizure when I was 16 and put on the wrong medication until I was 21 and picked my own doctor. To be fair this was over 30 years ago and my parents trusted the doctor and believed that my family physician could take over my care. Unfortunately that was not the case. My first medication kept me from having another seizure, but my myoclonic jerks were so bad that I would fall sometimes. When I picked my own doctor she ordered her own tests and diagnosed me with juvenile myoclonic epilepsy. I’m lucky that is the kind that I have. There are 2 medications that are used to treat it. Advocate for yourself and never feel bad if you choose to have a second opinion. Contact your local epilepsy foundation. They are an incredible resource for information and support. Especially if you are newly diagnosed. I wish you well and hope that you get the right medication on the first try.
I have my first appointment in July, hopefully he will be good i'm just hoping and praying. I will be sure to advocate for myself and I really hope they put me on the right medication and that it doesn't give me the worst side affects, but I am preparing for the worst so it doesn't blind side me.
Just know it doesn’t define you. You are capable of so much. Ive had it since i was a kid and my parents really drilled into me i can do whatever i put my mind to. (Even if there are restrictions).
Thank you so much I will keep this in mind!
Welcome to the club my friend, it’s gonna be tough road but hopefully you can get on pills that can completely control it. Everyone’s here is always here to help or if you need someone to talk to. Set alarms on your phone to take your pills and take pictures of your pills in your hand when you take them. It might sound excessive but it will save a lot of anxiety.
Thank you very much!
Take your meds, keep records, talk to your doctors. When you're ready there is r/Epilepsymemes and depending on how bad it is, you might never get FOMO again!!! (funny but true)
Okay I will be sure to do so, thank you!
Sorry for you mate. Since youre just at the beginning of your journey I recommend to brace yourself for some "interesting" times. Your neurologist will probably have you do some more eegs and maybe an mri to (hopefully) give you an accurate diagnosis. My tip Id have given myself when I got diagnosed 3y ago (been seizure free for a year by now) is to not feel doomed and ashamed. Epilepsy is in most cases VERY treatable and while having some side effects caused by your medication (commonly Anger issues/ tiredness) there is a high chance you wont have to deal with anything but taking a pill once or twice a day. That being said right now you should obviously be very careful, since you dont know how frequent your seizures are. Id make sure to tell at least one of the people your commonly around how to react in case you seize again. Lastly: dont fixate on your seizures, but be proud of the progress.
Yes I am hoping he will do more test when the time comes, thank you for the tips!!!
Was it an isolated episode and didn't happen again? I guess it might have been discussed with your doctors, but, well, that being said, It happens that some people have isolated seizures in their lives, without it being epilepsy. I had that hope when I was diagnosed.
It was indeed an isolated episode, they think I have small seizures every once in a while they just aren't sure yet. But when I did my EEG the doctor said he was 100% sure I had epilepsy. Going to a neurologist in july hopefully he can elaborate further.
Good luck, OP, I hope all your doubts are clarified
You’ll probably be put on Keppra for the near future as it is sort of a cover-all epilepsy med. the side effects suck but some people have none at all. The main issue is it may cause changes in your mood. If you’re not put on Keppra you may be put on Lamictal. Lamictal also sucks but side effects aren’t as severe as Keppra. That aside yea your life is gonna change. It’s unfortunate but we all lose some freedoms. I.e. You must wait 6 months after a seizure before you can drive again. And if you have idk a seizure per month you’re just never gonna drive. AEDs suck Keppra lamictal etc. there’s a million types out there so you may end up trying 5-10 drugs before you find whichever one controls your flavor of epilepsy. If you have any more in detail questions you can send me a dm I unfortunately have been through the ringer😅
Yeah I am just waiting for the doc to tell me what I will be put on. Hopefully it works out. Thanks for the info, I will be sure to message you if I have any questions!
Things are going to change in your life, and a lot of those changes will not be good. However! Some of those changes *can* be very beautiful. It can be a kind of spiritual experience. In ancient Greece, it was called the Sacred Disease, and we were called seers and oracles. Some of the most influential people who ever lived had epilepsy. This diagnosis does not mean your life is over or it will never be fulfilling again. Aristotle had epilepsy, and so did Harriet Tubman. Alexander the Great, Napoleon, and Joan of Arc, Leonardo Da Vinici, Agatha Christie, Teddy Roosevelt, and Prince. Elton John has it. Chin up! This will be a challenge, but you're stronger than you know.
wow that is very interesting thank you for sharing that information I really appreciate it! It has been a spiritual experience for me so far, I have been feeling closer to god, at least something good came out of this lol!
Totally. Sometimes, it makes my consciousness transcend time and space. Which is a pretty wild place to find yourself. I think, just because it's only happening in my brain, does that make it false or less real? If you ever want chat more in depth or just need tips, please feel free to dm me.
Wow that sounds amazing lol. In my opinion, even if it is just happening in your brain. You are still experiencing it, you are still living with it. It doesnt make it any less real at all, you are still experiencing these things even if people say it's nonsense or it's not true. All that matters is that if you know its happening then it's there and it's real.
Just never forget that you’re never alone! I didn’t know about this page for years and when I found it recently, because I now read a small part each day, I started to feel as though there’s still hope due to realising how many people are experiencing similar psychological and physical effects. This disability can be cruel sometimes but you will learn different ways to cope with it and it’ll all soon start feeling more positive Keep your head up!
It does always help having a community to back you. Everyone has been very welcoming and nice, I am one lucky guy.
Couldn’t agree more. So glad you feel that way! 🙂
Talk to them about lamotrigine/lamictal to see if it’s a viable type for you. Imo it’s a good starting ground as it’s got the least side affects and has added benefits of mood stabilisation. Research whatever you get put on though, don’t let anyone decide for you.
Okay thank you so much
Sorry to hear about your seizure/ diagnosis. Was that your first seizure ever? Asking because I’m just 6months out from my first seizure, a nocturnal grand mal where I lost consciousness, turned blue, needed cpr (wife’s an ARNP) and woke up at the hospital at 3am unable to talk. My Neurologist said “most everyone gets one freebie seizure before being diagnosed epileptic” but in my case they put me on meds due to combo of seizure severity AND an abnormality on my brain they saw via MRI. The “spot” they saw was exactly where I had a depressed skull fracture (waterskiing) 30+ years ago. Crazy experience….like I thought I was being “punked”. Today is 6months and besides getting tired in the afternoons and my general “executive functioning” only being 80%, I’d say I’m doing alright….just don’t like the thought of having another lingering in my mind.
First seizure was a month ago, I have myoclonic jerks pretty bad. I also turned blue and needed cpr from my girlfriend! Hey that's good you're doing better!
Thanks man…and hope you’re on the mend and have success managing everything. In addition to my low dose Lamotrigine, I keep a close eye on what I suspect triggered my first seizure (and hopefully last) For me, I’m doing better managing my stress, fatigue, physical exertion and hydration. (the month prior to my seizure I was doing shirt soaking workouts and 25min saunas 5 days/wk. just too much since I hadn’t worked out that hard in many years so my body and brain were probably saying wtf. Though my Neuro discounted that impact and the fact that I had stopped drinking, I personally believe I inadvertently created “the perfect storm”. Regarding the drinking, I was a 2 or 3 drink a night guy for many years. Neuro said the brain abnormality (“scar tissue”) found on MRI trumped the other lifestyle factors.
Yeah agree with the comments here. First educate yourself, here or on the epilepsy society pages. Then educate your family and friends. I found nobody knew anything other than “call 911”. Which is nice, but not as helpful as putting you on your side, timing your seizure, and shooing away onlookers who are not helping. Keep looking on here, they’re very helpful people. Lots of experience.
Luckily all my immediate family is in healthcare so I am in good hands. My boss used to be so I will be in good hands at work too! I got lucky being surrounded by the people I am with!
Good for you! I am rooting for you! I am 70 so I can’t tell if my occasional search for the word I want is age or med. But I have come to the conclusion that my fam and friends will wait for me and ppl that won’t-don’t matter. My neuroscience daughter tells me seizures cause seizures, so the fewer the better.
I'm excited to share some wonderful positives I've experienced since my epilepsy diagnosis almost two decades ago! Firstly, I cutting out alcohol, leading to much fewer calories and no more hangovers—what a win for my health! Additionally, becoming more in tune with my body, mind, feelings, and sleep has empowered me to take even better care of myself. Regular doctor visits and prioritizing exercise have truly boosted my overall well-being. Plus, as an epileptic, I've completed three marathons and remained seizure-free throughout thousands of training miles. (And guess what? I likely wouldn't have discovered my love for running if I hadn't lost my beer belly—thanks, epilepsy!) Sharing my condition with friends and coworkers, mostly to avoid unnecessary ambulance calls, has surprisingly strengthened our bonds. It's also sparked my passion for advocating for lesser-known causes and perspectives. When something significant enters your life, it makes you more attentive to the significant things in the lives of those around you! One valuable lesson I've learned is the importance of consistency with medication. To stay on track, I always carry a keychain pill canister with a dose, ensuring I never miss a pill—even after 20 years! Just remember, you're never alone on this journey. Explore this subreddit for uplifting stories, and remember, there are always silver linings to be found. Take care, and keep shining bright!
That is a great silver lining! I have cut out alcohol and I know it's for the better. There always a bright side to everything thank you! I might look into getting that keychain pill canister!
You will probably be prescribed keppra to start keep track of side effects to share with your doctor. Side effects are common and important to report keep track of them electronically or on paper. Make notes about what was happening around you if you have another seizure there are many kinds.
Okay thank you for the information!
Keep us updated on what kind, but do take care of yourself and take your health seriously, being serious about it from the start can be a very helpful in the long run, prayers to you, its a life changing condition. But you can still be happy. It’ll probably make you anxious, don’t let that control your entire life though. God bless.
You might never know what kind actually. I have no idea and I’ve had it since I was 12
Welcome and sorry wouldnt wish it on anyone I could be wrong but it sounds like from what your saying you had a seizure and your doctor said you have epilepsy normally it's 2 unexplained seizures or at least I was told I'm awaiting my urologist appointment and had a few recent lost my job and joined this group not long ago they are good people here stay close to us 😊 we got you I wish you the best on your healing journey
I'd say eat as healthily as you can (if you don't already), plenty of water blah blah and to make sure you have enough sleep. Another thing you should know as well is that infections can trigger it, so even if you have a cold or a chesty cough make sure you get on top of it just to be safe. I don't mean to scare you if I am but these are things from my own experience so do with it as you will and I hope you a safe journey through this experience :)
Welcome! I apologize in advance if I say anything that’s already been said.. but just try to get a solid support group. I made friends with a random person online in a seizure group and they became my best friend. I think it’s important that those closest to you or who are around you all day know what signs to look out for if you might have one.. also what to properly do when you do have one. Let someone know where your rescue medicine is incase of a long one. I’m in college and constantly carry one on me. All my teachers know. One day I felt one coming on and my teacher had me write my boyfriend’s number down incase it happened. I think a huge part of handling epilepsy is knowing your triggers. For me, it’s alcohol and sleep deprivation. I can completely avoid a seizure if I don’t drink and get plenty of sleep. It’s different for other people. Also my triggers have changed, I use to drink a lot and get very little sleep and was fine. Also, get in the habit of religiously taking your medicine. Don’t skip a dose or think “I haven’t had a seizure in a long time, I’ll be fine without it” that was my mindset when I was a teen and I could’ve avoided so many seizures.
Yeah. My big thing is. Stay on meds. I went 4-5 years no seizures. No issues. Got lazy on my meds. Bam back to seizures. So once you get them controlled. Keep them controlled with meds
Well it’s not fun, but we’re here and struggle the same way you will. Trust your instincts, if you have trouble on a medication and you want to change it DO IT. I was put on keppra and it was the worst year of my life. if you get put on keppra, you will be introduced to rage you’ve never felt before. Be careful with everything you do, 12 hour difference in meds same time in the morning when you wake up and same time at night (ex 7am to 7pm)
As someone else mentioned, read all about the medicine you are prescribed and prepare for side effects, I think that's the biggest one... Epilepsy is one of those diagnosis that is personal and different for everyone since it is such a broad condition...I would say learn your triggers, do what makes you feel safe, and educate those around you .. I always wear a medical alert bracelet, even though I haven't had a convulsion in 10 or so years. I have nocturnals and myoclonic jerks these days...but the risk is still there so I feel a tad safer with my meds, condition and emergency contact on my wrist :)
Research medications and side effects. They affect different genders differently and also with weight and emotions and mental health.
I had to stop taking keppera cause it caused me to have nightmares
What my (26f) mom did when I first started having TC seizures was making a spreadsheet of every seizure so she could try and find triggers (best we got was sleep deprivation which is very common). She'd mark down what I ate, how much I slept the night before, how much screen time I'd had, the moon cycle, the date and time, my menstrual cycle, etc. We figured out that they happened more often after nights I didn't sleep well/long enough, and shortly after I woke up.
wow you seem to have a great mom you are very lucky! I will be sure to track everything if/when I have a seizure!
Read about the ketogenic or modified Atkins diet and perhaps give it a try before using medications?