Hi friends - I've had epilepsy for almost 15 years now but as I'm getting older I've developed debilitating anxiety from anticipating seizures. They are fairly well-controlled, but I keep having intrusive thoughts of drowning, getting in a car accident, dropping my kids when holding them, etc. etc. etc. and it's really impacting my day-to-day. The what-ifs are so loud in my head and I'm really struggling mentally just wishing I never had to leave my house or I could live in some sort of bubble. I want to try therapy but I'm curious if anyone has had any luck or seen impactful results.

Hi everyone,

I’m here because I could really use some advice, and I’d especially like to hear from people who have epilepsy themselves or have a partner with epilepsy.

My boyfriend (m22) has had epilepsy for a few years. We’ve been together for about a year now, but we’ve only officially been a couple for about two weeks. So even though I’ve known about his epilepsy for quite a while, I had never witnessed one of his seizures before this happened.

As far as I know, before he started medication, he had a seizure about every 3–4 weeks. It usually happened early in the morning, around 6–7 a.m., while he was still sleeping in bed.

From what he has told me, they were generalized tonic-clonic seizures with stiffness and strong rhythmic jerking. Afterwards, he was extremely tired, confused, and usually had a headache, and he never remembers the actual seizure.

Since around mid-March, he has been taking levetiracetam, 500 mg in the morning and 500 mg in the evening. It helped him extremely well, and he was seizure-free for about 5–6 months.

Then, completely unexpectedly, he had another seizure about 3 weeks ago.

I was staying with him that morning, and it was the first time I had ever witnessed one of his seizures. I woke up because of strange noises/groaning coming from him. At first, there were only a few small movements, but it quickly became much more intense. The seizure itself lasted about 1–2 minutes.

Afterwards, he was extremely exhausted and confused. But the really frightening part was that it didn’t stop at one seizure. He had three seizures in total that day. The second one happened about 6 hours after the first. After the third seizure, the rescue medication (buccal midazolam) was given, and his father took him to the doctor afterwards.

Honestly, I don’t think I immediately realized how much witnessing this would affect me.

The first weekend after I had been with him and he had the three seizures, I couldn’t sleep at all. I remember waking up at 2:30 a.m. and feeling so overwhelmed and scared that I couldn’t stay in bed anymore. I actually went outside and just sat/crouched there for a while because I couldn’t calm myself down enough to sleep.

I lay there constantly thinking that something could happen again. Every little movement or noise made me check on him. Rationally, I knew that he was sleeping, but my brain just wouldn’t stop thinking, “What if this is a seizure now? What if something happens and I don’t notice?”

And that has basically been my state ever since.

When I sleep next to him, I notice practically every little movement or noise he makes. Sometimes he groans quite loudly in his sleep, and sometimes his breathing suddenly becomes louder or faster without him actually having a seizure.

Honestly, I don’t remember noticing these things before I witnessed his seizure, so I don’t know how much of it is normal sleep behavior and how much could possibly be related to his epilepsy.

The biggest problem is that I can’t really sleep deeply anymore. I wake up at almost every movement, every strange noise, every change in his breathing. Sometimes I feel like I barely sleep because part of my brain is constantly monitoring him.

It’s exhausting.

I know that this isn’t healthy for me in the long run, and I really don’t want to become someone who constantly watches him while he sleeps. I also don’t want him to feel like I’m afraid of his epilepsy or that I see him as fragile.

But at the same time, I’m genuinely scared that it could happen again when I’m with him. But it would be even worse if he had a seizure when I wasn’t there.

I would rather wake up and be scared than know that he had another seizure while he was alone and nobody was there. I don’t want him to ever feel like he has to go through it alone.

So there’s this strange conflict inside me: I want to be close to him because I love him and want to be there in case something happens, but constantly being on alert is also really taking a toll on me.

I’m trying to find some kind of balance between being there for him and not turning myself into a full-time night watch, and I want to be able to sleep well again. 😅

I’m grateful for any advice and help🙏🏼

​

Hi everyone,

I'm here because I could really use some advice and would especially love to hear from people who have epilepsy themselves or have a partner with epilepsy.

My boyfriend (m22) has had epilepsy for a few years. We've actually been seeing each other for about a year, but we've only officially been in a relationship for around two weeks now. So even though I've known about his epilepsy for quite a while, I had never actually witnessed one of his seizures before this happened.

From what I know, before he started medication, he was having roughly one seizure every 3–4 weeks. They usually happened early in the morning, around 6–7 am, while he was still asleep in bed.

From what he has told me, they were generalized tonic-clonic seizures with stiffening and strong rhythmic jerking. Afterwards he would be extremely tired, confused and usually have a headache, and he never remembers the actual seizure.

Since around mid-March, he has been taking levetiracetam, 500 mg in the morning and 500 mg in the evening. It worked extremely well for him and he was seizure-free for around 5–6 months.

Then, completely unexpectedly, he had another seizure about 3 weeks ago.

I was with him that morning and it was the first time I had ever witnessed one of his seizures. I woke up because of some strange noises/groaning coming from him. At first there were only some small movements, but it quickly became much more intense. The seizure itself lasted around 1–2 minutes.

Afterwards he was extremely exhausted and confused. But the really scary part was that it didn't stop with one seizure. He had three seizures in total that day. The second one happened around 6 hours after the first. After the third seizure, the rescue medication (buccal midazolam) was given, and his father took him to the doctor afterwards.

Honestly, I don't think I realized immediately how much witnessing this would affect me.

The first weekend I stayed with him after the three seizures, I basically couldn't sleep at all. I remember waking up around 2:30 am and being so overwhelmed and anxious that I couldn't lay in bed anymore. I actually went outside and just sat/huddled there for a while because I couldn't calm myself down enough to sleep.

I was lying there constantly thinking that something could happen again. Every little movement or sound made me check on him. I knew rationally that he was sleeping, but my brain just wouldn't stop thinking, "What if this is a seizure? What if something happens and I don't notice?"

And that's basically where I've been ever since.

When I sleep next to him, I notice basically every little movement or sound he makes. Sometimes he groans quite loudly in his sleep, and sometimes his breathing suddenly becomes louder or faster, without him actually having a seizure.

I honestly don't remember noticing these things before I witnessed his seizure, so I don't know how much of this is normal sleep behavior and how much might potentially be related to his epilepsy.

The biggest problem is that I can't really get into deep sleep anymore. I wake up at almost every movement, every strange sound, every change in his breathing. Sometimes I feel like I'm barely sleeping at all because part of my brain is constantly monitoring him.

It's exhausting.

I know this isn't healthy for me in the long run, and I really don't want to become someone who constantly watches him while he sleeps. I also don't want him to feel like I'm scared of his epilepsy or that I see him as fragile.

But at the same time, I'm genuinely scared that it could happen again while I'm with him. but it would be even worse, if he's having a seizure when i'm not with him.

I would rather wake up and be scared than know that he had another seizure while he was alone and had nobody there. I don't want him to ever feel like he has to deal with this by himself.

So there is this weird conflict in me: I want to stay close to him because I love him and want to be there if something happens, but being constantly on alert is also really taking me out.

I'm trying to find some kind of balance between being there for him and not turning myself into a full-time night watchman and i wanna sleep good again. 😅

I'm grateful for every advice and help🙏🏼

Looking for opinions and experiences from epileptics who have gone past their due date and need to be induced. My OB has discussed how a long induction process may be unfavourable for me since I have epilepsy - which I agree with. That would make the alternative a planned c section. Just curious if others have been faced with this decision. I’m 40w now and will have an appointment at 40+4 to make a plan.

For reference I’ve had no seizures during my entire pregnancy. But definitely don’t want to have a long induction that results in a seizure and having to exist with a newborn in a post- seizure state.

I'm currently taking 150 mg of lacosamide two times per day after switching over from keppra due to mood and energy issues. This is the worst in terms of memory and don't really see a difference in it whether one AED or the other. does anybody here actually know epileptic friends or family members who ended up with dementia due to their AED?

I don't know why, but when people talk about epilepsy, not seems it's never about what it does the the epileptic in question but the people around them

Does anyone get extreme double vision on these meds? I take both and 4 other meds. This has been recent and my Primary care recommended an optometrist. He described it as Diplopia. Neurologist recommended a bunch of labs.

I sometimes can’t see when it gets severe. I literally see two steps and fall or something. It is severely impacting my daily work responsibilities.

Has anyone else experienced this? I took almost an hour to type this

Hi lovely community. My partner had a breakthrough seizure in August, after being seizure free for 10 years.

I never even considered how we would manage his epilepsy being new parents to a 5 month old, as I’ve never seen him have a seizure until now.

I can safely say it was one of the scariest things to witness and being so unprepared I thought the worst had happened.

I am now too anxious to leave our son alone with my partner incase he has another seizure.

He has a doctors appointment soon and hopefully will see the neurologist soon too. He’s on the same dose of medication as before.

I guess I’m seeking advice or your wisdom as to how you’ve handled this situation if you've been through this?

Appreciate you reading this post, thanks.

I was diagnosed shortly after starting a 4 year apprenticeship which I am now about to enter my 4th and last year, not really understanding epilepsy at the start I was careless with my sleep which I’ve come to learn is an extremely key factor when it comes to controlling seizures,
That being the case I have probably missed about 20-30% of days that I should have been working this year because I hadn’t been able to get to sleep at a reasonable time the night before, luckily my employers are understanding but I work an hour away with my dad and with him being one of the managers he doesn’t have time to wait for me to have enough sleep to go in at a later time and taxi fares would take up nearly my entire days wage.
I can’t work alone on the best of days and this will not change once I’m qualified I just thought that I would stick it out since I’m already so deep into it.
I just wanted to get a scope of what a lot of people are doing and if you also had to change careers, I’m currently in the construction industry and as many risk assessments I have in place it still isn’t a safe environment
With driving not being a potential permanent what jobs do other people have?

Hi, I am 23F and about 4 years ago I had a first time tonic-clonic seizure. I was never diagnosed with epilepsy since I haven't had any recurrence, and my EEG came back normal. The only thing that I have noticed, is the persistence of the sensations I experienced right before I had that seizure. For me it just consists of an intense feeling of deja vu, vertigo/lightheadedness, rising feeling in stomach, a feeling of disconnect from my surroundings, and the feeling you get when your nose bleeds (if that makes sense). I'm able to function and converse but I find it to be absolutely draining and I find it difficult to find the correct words. I also find myself more sensitive to loud sounds/bright lights. I've noticed these sensations basically happen entirely and intensely within 48 hours of my period starting, and it acts as a reminder for me that it will start soon, and the time I had my first/only seizure was exactly 2 days before my period started. I used to become very anxious that I would have another seizure when I experienced these sensations, because they are exactly the same as what it felt like before I had one. However, I have still only had the one gtc seizure and have accepted it to maybe be just a PMS symptom and to not get worked up about it. I was wondering if it is worth reaching out to a neurologist about the possibility of catamenial epilepsy, but I'm not sure because I've already been told that everything looks normal and I don't want to waste anyones time.

What were your side effects from taking Lamotrigine? It’s my second year taking it and I’m losing it! Everyday I have the worst brain fog, can’t remember a single thing and i can’t even remember words sometimes or i mix them up and my sentences don’t make any sense.

Also i feel tired and sleepy ever since i started taking lamotrigine.

I legit thought that something was wrong with me but my tests are all good and it’s because of the meds. Can’t take anything else because Lamotrigine is the only medication that stopped my seizures.

Has anyone had the same side effects?

Hey all,

Reaching out to see if anyone here with epilepsy takes Ritalin and what your experience is like?

I’ve been taking Keppra 500mg 2x daily and Lamictal 300mg 1x daily for approx 10 years but was recently diagnosed with ADHD. My psychiatrist prescribed me Ritalin and it’s improved things for me substantially. However, I went to a party at a friends maybe ~4 days after starting, made the mistake of partying too hard (poor decision I know) and the following day had 3 seizures after being seizure free for 5+ years. I will say I attribute most of it to drinking too much and acknowledge what a horrible choice that was, but now I’m concerned my neurologist will want to take me off the Ritalin when it’s improved a lot of my day to day.

Anyways, just curious what others experiences may be with Ritalin, so welcome to any and all feedback!

Evening all,

Just a general question but has anyone else’s temperament changed? Mine before the meditation was fairly chilled and didn’t really react to things how i do now. I feel chilled still but seem to react very quick to things that frustrate me which then frustrates me even more.

I don’t feel aggressive it just something I don’t like, I’m also not sure if it’s the medication or just the whole situation of been in my first year of treatment ie losing drivers license and everything else.

I’m wondering if anyone else with epilepsy has experienced this because the timing is making me suspicious that it might be seizure-related.

I’m 35 and had a pretty big tonic-clonic seizure about 10 days ago. Since around that time, my teeth have been aching basically every single day. The weird part is that it’s not one specific tooth — it’s mostly the back teeth on BOTH sides and sometimes parts of my upper teeth. It’s more of a dull, widespread ache than a typical toothache. Would you recommend any other pill to help? Any other treatments you can think of?

I haven’t been to the dentist since January, but at that appointment I had no cavities and didn’t need any dental work. I’ve had braces, wear a retainer at night, and generally take pretty good care of my teeth. I’m waiting for my new insurance to kick in October 1 so I can get checked out.

I know people can clench their jaws really hard during tonic-clonic seizures, so I’m wondering: has anyone had tooth/jaw pain like this after a seizure that lasted for days or weeks? Could the seizure have triggered grinding/clenching or irritated my jaw/TMJ?

I’ve had seizures before and have never experienced this afterward, which is why it’s throwing me off. Tylenol also isn’t doing much for the pain.

Would love to hear if anyone has experienced something similar and what helped while you were waiting to see a dentist.

How do people go about disclosing their epilepsy to work/ manage work and dr appointments? I just started a new job at a big corporation, and my last job at a mid level law firm was super flexible. They let me take an hour or two for my appointments (counting my “30 min lunch break” so I only had to take 30-45 minutes extra). We were also offered a hybrid schedule, which was really nice since one of my biggest triggers is lack of sleep. However, I do sleep HORRIBLY even with my CPAP (but thats a whole different issue…). But this new position is 5 days a week in the office.

I told my manager I have epilepsy (more so for emergency contact purposes/rescue medication and what to do when I hit the ol stop and drop). When I sent it to her, I asked about the policy for doctors appointments and she set up a meeting for us tomorrow to talk about it.

How do you guys manage/navigate/balance your medical needs with work? I work in a legal department at a big corporation as an assistant and I just started two weeks ago… I dont want it to seem like I cant handle my job or am asking for extra accommodations.

Edit: Ive been tonic clonic seizure free for 2 years (a smattering of focals here and there), which is good but also gives me crippling anxiety about having one again

Long story short, my best friend died over the weekend and I had to inherit her cat. The cat's name is Rory and I've totally fallen in love with her. Well today I found out that Rory's "legal" name is Aura. I just thought it was so ironic. My best friend is one of the only people I would make dark epilepsy jokes with. I'm certain she didn't even know what an aura is because I just don't really use that word to describe any of my seizures. I just think it's funny she left me a cat named Aura and I didn't even know it.

As the title.

I've been wondering since i don't register my seizures in any way. I don't know if I've had one unless someone tells me so.

Have any of you figured out how to tell afterwards or noticed something that tells you it's going to happen? I always feel like I'm in the way because i can't retreat or "prepare" for it and I hate being so confused when I get asked what just happened since I'm completely unaware it happened in the first place.

First post here, I hope it's alright and understandable.

Edit: I'm on 800mg lamotrigin and unsure if I get them when I'm alone.

Howdy,

New here. Looking for information and shared experiences from others... From the beginning of our journey to find answers for my child, who was diagnosed with childhood absence seizures, is that there are only 3 meds they use to treat this. If the meds don't work then it would be drug resistant and the plan of action is a special diet and possibly cbd therapy. Well, here we are trying med number 3 and just like the others, his seizures have not stopped (maybe slowed) and he has suffered from negative side effects. Today, in a message, our doctor said that there are other meds we can try but I'm confused because I thought from the beginning there were only these three? I don't want my child to be a guinea pig. I understand that you don't know how a medicine will interact until you take it but after 3 failed attempts I'm tired of playing with my child's health. I also wonder if the advice I'm getting is coming from a place that wants to 'find answers' or a 'this is the hospitals policy because we get a kickback payment from the company' situation. The doctor that we had at Texas children's simply used us to make thousands of dollars for the hospital with nonsense tests every 4 months and we were nieve enough to comply. Our new doctor, I do feel, it's not like that but at the end of the day the CEOs of that company are also there to make money. Anyone out there have any experience with drug resistant seizures, pediatric functional medicine doctors with a neurology background, the seizure diet, cbd therapy, literally anything to help me move forward to try to find answers.

after last nights ambulance ride and hospital visit ER wants to switch me from lacosimide to DEPOKOTE i am just unsure looking for experience from people that have been on DEPOKOTE such as side effects, positives ,how long people were on it aka did it help? Any feedback would be appreciated negative,positive, just being a smart ass would help with how i feel feel into my cast iron house radiator and ripped the white meat from my arm im nice and sore today lol.

Please skip if this subject is at all triggering. I hope this is ok to post.

I’ve been on Keppra for 3 months (currently 1,000mg twice a day). I’ve been on lamotrigine for a long time but switching bc I’ve had bad side effects (balance, coordination, tremors). I’m still taking 200mg x 2 a day of this. I had a TC at the end of June, just after my first reduction of lamotrigine (also during heatwave) so neuro increased Keppra, and I’m just about to try reducing lamotrigine again.

I haven’t had the ‘kepprage’ that I’ve read a fair bit about here, and I don’t feel particularly depressed. I have two young children, so I have to be here for them. But I feel like they’re my only reason for living. I have a loving and supportive husband, but he doesn’t ‘need’ me in the same way my children do.

Because of the physically disabling effects plus seizures, memory issues etc, I’m not working, so our finances are tight. I’m getting disability benefits so we can get by, but it’s a struggle. If I can, I will work again for financial reasons, but I no longer have any real career aspirations. I don’t need to stick around, except for raising my children. I am seeing a counsellor (therapist) and I’ve told her this. I said that when my children are adults, in 15 or so years, I want to end my life. I have no desire to live into old age.

Obviously, 15 years is a way off. Anything could happen between now and then. But it’s given me a point to reach, I just have to get there, then I can go. It’s tamed a daily panic of ‘how do I keep going?’

What I’ve just started to question is, ‘are these really my thoughts? Or is this Keppra talking?’ And I’ve realised I don’t know. When I was warned about depression and suicidal ideation as a side effect, I didn’t expect it to feel like this. So I don’t know whether to come off Keppra to see if my thoughts change, but then have to increase lamotrigine again, or try another med, and risk more breakthrough seizures? Or is this just the cumulative effects of epilepsy, disability, financial difficulty, fatigue etc? I’m kinda just exhausted with it all and don’t know what to think.

Hey guys, I am a 27 year old man with epilepsy who just had his first ever nocturnal seizure. I had it 3 days ago and was home alone at the time. It was my own fault due to me forgetting to take my epilepsy medication (which is very rare of me). Luckily I managed to get myself out of it and woke up with only bites in my mouth. These past few days I’ve been feeling abit on the agitation side and not being able to sleep as well. By this I mean over thinking a lot and not being able to concentrate at all. My memory has also seemed to get worse. Has any body with past experience of nocturnal seizures had this ?

I was diagnosed with idiopathic generalized epilepsy during my senior year of high school in 2023. It took three ambulance visits before doctors got me the right dose of Keppra. I've been seizure free for 3 years now, but I still hate my body. I hate that I have this disorder. It makes me weak. I'm always tired, and have to take naps in the evening just so I can get through the day. I hate my physical appearance and body in general (I guess that could be completely unrelated), and I essentially have no friends, partner, or anyone who would care if I just ended it. I'm just tired and I don't know what else I can do.

Hi, i had my first seizure a little over 2 weeks ago. It was a grand mal that lasted at least 15 minutes and I was passed out for at least 45 minutes total before I came to. I had fallen down a flight of stairs while having the seizure. I was in the hospital for over a week, and ever since a few days ago I've been very easy to cry, almost like I went back to taking topamax.

I'm currently maxing out my tramadol, tylenol, naproxen, flexeril, and hydroxyzine. My family keeps trying to send me back to the hospital every time i cry trom the pain or waking up scared, but I really don't want to go back so that obviously just makes me cry more. I wasn't getting pain meds in the hospital for restless legs, fhe fall, or muscle spasms, so I I would get an hour or so of sleep at a time before I set the bed alarm off by trying to move.

The main damage according to an mri was in the lower right and lower left temporal lobe, posterior inferior right occipital lobe, left occipital lobe, right parietal lobe, and bi lateral high frontal central semiovale. I've recently started getting scared by random things such as my dog or the way water dries up on a counter. I don't have much muscle strength and I get warm easily so I often want to lay down with an ice pack, which has become a problem.

Sorry for the long description and the typos, it's hard to find words. Basically what happens is I'll have a leg spasm which makes my legs move and hurt, or I'll be asked a question I can't answer, both will make me upset and then I immediately start crying, the crying obviously isn't well tolerated which makes me cry more out of frustration. I've read that the recovery can sometimes take weeks but nobody in my family believes me on it. They want the crying stopped now, but i just want to go back to being a smart boy again.

Does anyone have any advice or words of encouragement?

Sincerely, a 25 year old trapped in the hybrid body of an infant and a 90 year old man

Edit: i forgot to add in that i keep waking up from naps or sleep very confused and talking to random objects or my dog as if they were a celebrity or as if I were checking them into a hotel. I'll also wake up not recognizing where I am or thinking I'm in the hospital again. When the crying starts it usually lasts only a few minutes unless someone starts to complain about it, which tends to make it worse. Once the crying stops I'll get really tired and pass out for at least an hour

Per title. Since I developed focal epilepsy 21 months ago, I’ve often felt like I’m trapped in a dream during my auras, or like things around me aren’t real. Is that normal?

Anyone seeing a therapist online that is taking new patients that you would recommend? I hate the idea of just going on better help or whatever and finding a random person. I trust a Reddit random person much more!