This is week 3 of 200mg XCopri. I haven't actually had a seizure for 2 weeks, which is amazing for me lately. I do feel the aura sometimes still, like- this feeling usually sends me to the floor until it's over. But nothing happens. I either move on, or get dizzy. This last one at work sent me home and I laid down and passed out almost 2 hours. Weird. I'm not feeling much in the way of side effects, thank God. I'm wondering if the next step up in dosage will change that, if taking care of auras altogether. Anyone experience this? Thanks.

Was drinking from a waterbottle yesterday. Next thing I know I'm cleaning up spilled water. My son asked my why I just stared at the water bottle after I dropped it. I told him because the water was making funny noises 🤣🤣

Before my 2 seizures at between 8-9 am while sleeping in the last week, I had been seizure free relatively without issue for nearly 4.5 years
And today even though I'm not sleeping during this time I still feel funny between 8 am- 9am. What's going on?
I dont understand what could be possibly going on for me to do so well for so long and then suddenly I have seizure issues/flare ups between 8-9 am?
My neurologist is booked until October to get seen
I've of course been following doctors orders and taking my medicine like I should. But I can't help but wonder what is going on....
Any ideas would be appreciated even if they are just thrown out there (I'll still follow doctor orders of course)
I'm still going to do what I'm required but I just feel like I need to do something to stop this from being an issue

 I finally got the results back from my 3day video eeg that I had a month ago and I must say I was somewhat surprised with the result.

To fill you in on why it was such a shock I will give you quick refresh on what my tests were like 8 years ago.

Back then I started with my new Neurologist and reported issue unknown at the time then started having eeg tests I ended up having three one hr tests and one 3 day eeg test all showing seizure activity. Then last year I had a 3 day video eeg after a TC a few months before and the test showed three focal seizures.

Fast forward just over 12 months later now with a med change and a few other changes I had the same test I had last year, and it has now shown no seizure activity. This is the first time in 8 years maybe longer that I have had a eeg show NO seizure activity.

To be completely honest this was completely unexpected. I was expecting this eeg to not be as bad but in context that it would be like the eeg tests I was having when this first started 8 years ago which means I would still have seizure activity but then be told it is fine for now let’s see what it’s like in 6 months. Nope. Not even that. No seizure activity at all.

Just a FYI: I also had two MRI scans over the eight year course as well.  

I take quick release tegretol, years after the doctor felt controlled release wasn't working.

3 times daily, I still have seizures around my period. (Neurologist doesn't believe in catamenial seizures.. because he's a man?! Idk)

Question: Have you found changing the times on when the medicine was taken helped avoid all seizure?

So I recently had to quit my kitchen job due to my epilepsy. My doctor gave me a list of accommodations that the employer would have to make. I provided the list verbally in person and then in email. They agreed to make these accommodations in person but during the email thread they told me I would have to continue to work my General Manager position without the accommodations that they offered. As soon as they sent that, I put in my resignation. I have some screenshots but they deleted my email almost immediately so I didn't get everything. My lawyer seems to think I have a case to go against them due to constructive dismissal. Looking for some input before I go forward with this or filling disability due to my condition getting worse. It has been about 3 weeks since this happened.

I had two back to back seizures in September/October, broke my face, it was bad. License was suspended and all. An MRI revealed it’s not epilepsy but a malformed/rotated hippocampus. I didn’t know where else to post. I’ve been on meds and seizure free 6 months got cleared to drive yesterday. I had a seizure last night, the day of my 6 month checkup. I take zonisimade. Any ideas? I can’t have my license permanently suspended at all so Im debating if I should tell my doctor.

Doctors have diagnosed me with epilepsy related to my Mitochondrial disease. I mainly get seizures when I'm in metabolic crisis. The frequency of such crises is only increasing and thus more seizures as my disease progresses. The seizures are very distressing for everyone involved and I'm desperate for anything that could reduce the frequency.

I'm looking for others experiences with this and wondering if you're also been told traditional seizure prevention meds would not prevent these? If not traditional anti epileptics, what is used to treat them? Two neurologists have kind of just swept it under the rug and said nothing can be done. I also cannot take pills or liquid medications due to malabsorption. So I haven't been following up with neuro since I moved. Landed in the ER for my most recent episode where I had at least 8 short seizures. They gave me an urgent referral to neurology locally which I will be following up on.

My seizures are categorized as absence seizures primarily although I apparently stiffen or twitch slightly sometimes according to those who witness it. They are lasting anywhere from 10 seconds to 3 minutes for me and usually happen back to back. I never remember the episodes. Seizures make me feel awful afterwards and I hate having episodes of seizures out in public. My last episode was at a concert, I had to be wheeled outside by my husband while I was seizing so he could call an ambulance. I don't remember much but he has filled me in. While I'm greatful everything turned out okay I'm embarrassed that I caused such a scene and ruined our night out.

For those curious I have an abnormal case/presentation of Alpers syndrome/mitochondrial DNA Depletion Syndrome from a pathenogenic POLG1 variant. I have some of the clinical presentations for MELAS but only had a VUS on that gene.

18f

You guys will hopefully/probably have more experience with this than I do.

I have prom on the 10th, but don’t have a driving licence or provisional. I don’t have an ID card because I don’t go out to drink and if there was alcohol at the function my mum would buy it for me. I was going to use my passport but it expired literally last week. Will they accept this as proof of ID? I don’t have a baby face (except I was 13 in my passport photo) but I am one of the older students in my year group/grade.

I have an EEG soon and have been nervous on timing my sleep schedule beforehand. I get nervous whenever I have poor sleep and worry about seizures. My hospital for the EEG is 30 min away and I wonder how much sleep I could get to not have a seizure while also be able to sleep during the procedure.

Does anyone have any insight on this predicament?

This is amazing , just amazing .

https://www.scientificamerican.com/article/wild-orangutan-uses-herbal-medicine-to-treat-his-wound/

Hey all! So the thing is, when I was diagnosed 7 years ago, I was put on Lamictal. That was before I had any big seizure, fortunately we found out based on these small morning ticks. However, after experiencing a big seizure - I was being dumb and didn’t sleep for a night, I was 16 though and romance was involved - I was put on Keppra as well. It was 200-0-200 Lamictal and 1000-0-1000 Keppra back then.

Now, I’m not entirely sure, but retrospectively I think it was with Keppra that came my two years of frequent headaches. I had to take pills for that every second day almost. It got better eventually though. Today I’m at Lamictal 50-0-50 and Keppra 500-0-500.

In the past year, I’ve been trying to solve several of my health issues, be it headaches, being tired all the time, shitty sleeping etc. I know these things can have several causes (and I actually stopped smoking/coffee/alcohol to find out) and I don’t mean to trace it back to epilepsy and my meds. But if there’s a better option out of Lamictal/Keppra, I’d rather have the better one. Is there anyone who has experiences with both of the meds? Which one do you think is better?

Thanks!

In the beginning when I was diagnosed with TLE, I felt like my brain constantly foggy. With the meds it got better but now it has returned. Someone told me that it’s not part of the epilepsy but just normal „brain fog“ which really confused me and made/makes me doubt my sanity. Do you experience the same thing? (I know that it’s not medical advice, I’m just curious.)

Is it just me? I was folded in a strange way. I got up as my kids and hubby were getting up. Luckily they didn’t see me.

I could barely walk. My hip still hurts so badly and doing lots of stretches also my toe on my foot was hurt. I was able to make it the couch and no one is the wiser.

(Lamictal diagnosed with seizures
Mississippi.

Hi all - I spent 4 days in the EMU several years ago, but I wasn’t on any medication at the time. I had my first and only TC in November, so I go back to the EMU on Monday. This time I’m on Keppra, 500mg twice daily, which they plan to stop during my stay.

My question (which I plan to discuss with the medical team as well) is if there’s anything I should expect when getting back on Keppra after the week-long break? I was exhausted and overly emotional during the first few weeks of starting the med, so I’m hoping those symptoms will be less severe if at all? Just hoping to get an idea of what going back to “normal” will feel like.

Looking for a discord server for those that have or those that live with someone that has epilepsy?

So I got tickets with my partner for universal solely for Nintendo World however I didn’t realize how little I could do.

If you have any recommendations for what an epileptic can do there let me know

Had my Keppra dose doubled to 2000 mg last month after a series of serious TCs.

Could NOT handle the new dose- crazy mood swings and kepprage that quickly manifested and escalated. I was reminding myself of my undiagnosed, severely bipolar ex.

Doc agreed to return my dosage to 1000 mg per day about a week ago. I’ve been levelling out for the last few days, but still feeling like a basketcase.

Depression hit hard this evening after doing pretty good all day. Feeling apathetic and self-pitying and lacking empathy and wanting to make self-destructive decisions that are totally at odds with everything I’ve been working so hard to accomplish.

Right now Im just lying in bed so I don’t pick another fight with my partner because I can’t control my negative emotions.

I already spend so much time, money, and effort trying to keep myself physically and mentally healthy, but it’s been feeling like a losing battle lately.

Just depressed.

So I was thinking about this today I only have one friend who is also epileptic and when I was talking to her about medication she said something I found interesting she said both kepra and lamictal (lamotrogine) increased her seizure activity. I was on lamictal at the highest dosage and it was having no control over my seizures then recently I was told to take kepra and lamictal together and had an extreme increase in seizures to the point of not being able to go anywhere. And it surprised me to hear she had a similar experience. I'm wondering if anyone else has had this problem?

got my EEG results back with normal readings of course. after being pushed around by my job and being warned i may lose my job very soon, a normal EEG is not what i wanted.

How do you deal with the disappointment?

yes, a normal EEG is probably a good sign, but I’ve got kids and am still terrified to drive them… especially considering the initial testing process was started because i had a seizure at the wheel and ended up in a curb.. just not sure how to feel, or if i should keep pushing

Whenever I have tonic seizures, afterwards my limbs always feel so heavy. Literally like they are being held down by weights and sometimes it takes 30 minutes or longer to gain strength back to get off the floor. And for a week afterwards my whole body is sore as if I’ve done a full body workout. I just want to know if I’m the only one.

I’ve noticed lately that every time I drink green tea I get an aura. I’ve avoided it out of caution but accident drunk 2 cups tonight at a Chinese restaurant thinking it was black tea. Does anyone else get auras from green tea? Or am I just weird?

Thought I would share my experience incase anyone else is going through/ goes through the same. I had my first loss of consciousness seizure on 12/26/24. I was tell to the ER. When I came to the next day, the ER doctor told me I wouldn’t be allowed to drive for 3 months. I accepted this and assumed it was honor system. A few weeks later my wife did some research and found out CA is a doctor report state so I should have gotten something from the dmv stating I was suspended. I hadent. In the beginning of March, so 2 full months later, I had my follow up appointment at the same ER doctors office (a neuro) . She asked me if I was driving, I said no, she said ok good just bring your paperwork in at your 3 month point and we will fill it out and get you your license back. I said I hadent ever received paperwork and that I must have been overlooked. She said no, sometimes they run behind. About two weeks later , on 3/17- so at this point 9 days before my 3 month no driving / no seizure mark , I got a suspension letter from the dmv saying I was suspended effective 3/17. The letter was really confusing and vague to me, a person who had never been through this before. It stated I had the right to request a hearing . It didn’t have any timelines on it . Basically just ‘you are suspended for medical reasons and have the right to request a hearing . If you want to do so, you need to request within 10 days of this letter’

I got a lot of mixed reviews and advice about the hearing . I decided to call the DMV (it’s a special division that deals with DUI, medical suspension, gross bodily harm etc) they are a completely separate office from the regular DMV’s. So I called the MDMV and the woman told me I needed to get my doctor the Drivers Medical Evaluation form advising that I was safe to drive, and once they got that , they would review it and reinstate my license or make another decision. I asked if I should request a hearing as I was only 9 days away from my 3 months. She said “well, you have the right to request a hearing, but the only reason to request a hearing is if you are contesting the fact that you had a seizure .” Since I did have a seizure I saw no reason to request and go through this mini trial where you have to present evidence, call witnesses , provide medication records etc. so I got my doctor the paperwork and they faxed it to the MDMV on 3/27- one day after my 3 month mark. The dmv tells me legally I can not drive until the suspension is lifted , regardless of what the doctor put on the letter or told me. So I wait. I called every few days and was told something similar but different every time. “It’s processing, call back in 2 weeks.” “It’s processing, call back in 6 weeks if you don’t get a letter.” “It’s processing, call back in 2 days it should be done” “we’re waiting on a senior tech to review it , once she does you will need a hearing to reinstate .” This one took me aback, especially because it was the same employee who told me in the beginning that I only needed a hearing if I was contesting the fact that I had a seizure. When I questioned her on this , she told me “well they just like to have a conversation with you before you’re reinstated .” So upkicks the anxiety again. Down the rabbit of hole of research, finding out what I need to do for a hearing , or perhaps a phone interview (where I learned they can hold tiny things against you to keep from reinstating you, IE anxiety depression etc, so less is more.) Finally the day comes- 4 weeks after my doctors clearance (so now 4 months without driving)- and I check my DL status online and it says valid. I called MDMV to confirm and they said yes, it’s been reinstated for ‘favorable medical review’. And that I could drive again.

Here’s the TLDR; If you get suspended for LOC secure in CA:

Make sure you get your Driver Medical Exam paperwork to your doctor THE DAY of your 3 months (or 6 months if that’s what they tell you - it can be either depending on your situation. DMV prefers email. Have them email it to them and you, or request a copy. Be prepared to not drive for longer than the doctor tells you because the dmv has to process the paperwork . It can take anywhere from 2 to 6 weeks , 4 in my case. Stay on the DMV . Call often . The first time I called , a few days after my doctor faxed the paperwork , they said they never got it. I called a few days later and they said yes they did have it and they would key it in while I was on the phone so it would get officially aly processing. Once keyed in , the “senior tech” makes all decisions for the next step. I don’t know if they can override doctors advise but be prepared for a potential phone interview about your health etc and don’t disclose any more than you need too.

I know this is long but honestly when I got that letter I was so lost, scared, frustrated etc. I hope this helps other people know what to do and manage your expectations .

Stay strong friends . Here for any questions.

Not guaranteed diagnosis because of one negative sleep deprived eeg

But one year history of “panic attacks” with smell, vertigo, wave sensation, zooming in and out,…

I’ve never had deja vu; I’ve always had the opposite-jamais vu. Like suddenly things don’t feel familiar to me and I lose connection with reality.

Anyways my episodes have been better as I titrate up lamotrigine. I’m on 150 at nightly these days. I have reason to believe that I had a seizure today. I was working, suddenly felt a “brain zap”/log-in and log-out sensation and then had some dyslexia with text appearing wavelike. This dyslexia was about twenty minutes. The brain zap and “am I in this room right now?” sensation was maybe a minute and a half. I was a little tired afterwards. Three hours later and I feel perfectly fine.

This is progress actually. Before lamotrigine, the post-ictal (again if I actually have epilepsy) would last for days. I’d be brain fogged and high for 2-3 days post episode. But I’m upset and discouraged that at 150 mg, I still have episodes. I really worry this means that I’ll never have symptom stabilization. I also really don’t want to discontinue lamotrigine. It’s the only thing that keeps my su*cidality and mania at bay and under control.

Is 150 mg enough to see full remission of focals?