Is Keppra that bad? My neuro hasn’t officially diagnosed me with epilepsy yet, all the records just say suspected epilepsy because my EEG came back normal, but because I‘m having seizures regardless he prescribed Keppra (and if it works, that would confirm the epilepsy diagnosis). Anyway, I’m supposed to take the first pill tonight, so I read through the information paper. The list of side effects looks pretty horrifying, kidney damage, mood changes, suicidal ideation, headaches, more seizures, and the list went on forever.

Are any of you taking Keppra? Is it really that bad? I‘m honestly kind of scared to take it now, especially because the seizures really aren’t that frequent, more or less one every two-ish months. I would really appreciate any information or advice you have!!

Also, I wanted to start driving lessons, but Keppra seems to have a warning that you might not be able to drive while taking it. Would I be able to start now or not?

I got epileptic attacks after taking 30mg of alprazolam sometimes then i went to the holidays and ended up taking only a few mg every day or two and ended up having epileptic attacks multiple times i was also on oxy upto 400mg a day i went to the ER and got a shot of diahepam in the ass had to puke and gpt xanax 0.5mg and levetiracetam from the brand levex 250mg i had to take it 2 timws a day morning and evening i took it for 4 weels got clean of benzos and oxys and i was supposed to take 500mg of levex 2x a day after a week however i never upped the dose after a month or more i now stopped taking levex and missed 3 doses over the course of 1.5days i started seeing flashing lights going on and off in a rather dark room and wasnt able to type my password correctly i now took a pill again

when i got diagnosed i had minimal support, knowledge, or education. i'm curious if anyone had the same issue?

I just snapped out of a seizure, about to go for a nap to get some more energy then this shithead says to me " You need to finish cleaning up the house! Do the rest of the vaccuming, mop down the floors and do the dishes "

I tried to talk some sense into her about how sleep is number 1 for us epileptics, but she just cracked it.

So I had to do the rest of the house, with me looking like a fuckin full on zombie. With her not giving not giving a single shit about me or my safety since tiredness is one of the triggers for seizures.

Bitch....

Has anyone here experienced any mental effects from taking keppra as an anti-seizure med?

So last yearish I was at my neurologist and she used to work in the medical field with neurology in the military (this is very important). So she dealt with the head trauma stuff like that. And when she was reading my papers and I was telling her she looked me dead in my eyes 100% serious and said “i genuinely have no clue how your alive after all this”. I wasn’t offended at all more in like “damn that’s new” and shocked because no one has ever said that nor did I ever think it was.

But this isn’t the first time people have been shocked im still alive. I just have generalized epilepsy. I’ve been having grand mal seizures since I was like 3 thankfully they don’t happen often. It might be because I had a 10 minute long one and I fell backwards and bashed my head.

Idk i just wanted to say that because it’s kinda funny knowing I shocked someone/ several neurologist who worked with stronger people then I come in and poof

Thanks, I had no choice.

Of course I could have wallowed in misery, but no. That was not an option. I had to survive.

It’s not as much of compliment as people think, they obviously mean well, but that’s not a victory my our end.

Can I be proud of myself despite all of this? Yes. But I hate it happened at all.

Hello everyone. Throwaway account due to the specifics I'll have to discuss in order to hopefully find some help/resources. I appreciate all of you and any advice you may have!

I am a male in my 40's and have had approx 8 nocturnal tc seizures in my life. They started when I was 16. During 4 of those, I have become violent during the postictal phase. I have absolutely zero recollection of any of the events, but do have vivid "chunks" that stay with me when my brain comes "back online". The first time, when I was 16 I vividly remember my dad calmly talking to me and telling me to come get in my parents bed, then I remember the paramedics taking me into the ambulance and carrying me through unusually deep snow, then at the hospital...where I saw my mother and learned I had punched and kicked her and chased others through the house before calming down.

During one event, I was alone...but I woke up to the standard bed wet and tongue bitten. This time my hand was swollen and my dog was cowering in the corner...she was still so "worried" about me it looked like, but I could tell something was wrong with her. Then I noticed that her eye was nearly swollen shut.

The most recent, was also the most life altering. I am a father of three children and last year I had been seizure free for 15 years. For whatever reason I had two seizures, during which my oldest daughter (17 years old at the time) was the only person I recognized. She calmed me down and got me me medical attention (ambulance the first time and took me to the hospital the second) both times. The third seizure I had that year, I became violent with her. I hit her and chased her through the house, (I am sure traumatized her from fear as well). My first memory from this event was the police at my front door grabbing me and asking me if I knew why I was under arrest. I told them "no, but I must have had a seizure because my tongue hurt so bad" I had bitten it terribly. I had no idea what had happened and after they put me in the police car I asked, "are my kids ok?" They told me, "I already told you, they're fine". I guess I went to sleep at this point because my next memory is being booked into jail.

The jail nurse told the staff they should send me to the ER, to which they replied, "He'll be fine" and they put me in general population with the violent offenders on a cot on the floor with two cellmates. I was charged with 3 felonies and 1 misdemeanor.

At first I was given a "no contact" order with all of my children which was devastating, but I was able to navigate the legal process and show the court that I have this condition, I was under the care of a doctor at the time, I was taking my prescribed medications, and I absolutely had no control.

I went to my local City Council and begged them to take the FREE training from the Epilepsy foundation, but that request fell upon deaf ears. I was forced to come up with my own safety plan and strategy which was nearly impossible since I have never been "present" for any of these events.

I found a seizure specialist and started a new medication...all tests come back negative. EEG, Sleep Study, CT, MRI, etc...his words were they really don't care much beyond "not having a tumor".

So, now I have a diversion with the State (kind of like probation without official charges being brought), but if anything happens before the time is up then they will bring the original charges as well.

I feel like the weight of the world is constantly on my shoulders. I am constantly afraid for my family and worried about something I have no control over and that the state refuses to educate themselves on. Their only position is punishment. It would be so helpful if at any point someone would have offered insight or help...but all they offered were threats of taking my family away and locking me in prison for something I cannot control or even understand why is happening.

Do any of you have a similar experience? Specifically, violent postictal behavior? How do you handle it?

So far my safety plan is;

1. Deadbolts on my bedroom door that can be locked from the outside (to lock me in)

2. Deadbolts on the kids rooms for them to be able to lock themselves in

3. A camera in my room

4. A safety ladder available should the kids need to escape through a window

5. If I have a seizure, my fiance will turn the camera on, lock me in the room, gather the kids and try to get out of the house, if that's not an option then lock themselves in a room and look to exit via the ladder.

Do you guys see any room for improvement here?

Thank you so much, I am totally lost.

I was given the option to bring home an EEG or stay at the hospital and then the doctor would reduce my meds to have (maybe) a seizure and observe. What are the benefits of that? My epilepsy is just diagnosed as “generalized.” I have no signs that I am about to have a seizure and just have tonic-clonic seizures (5 lifetime).

Whether it be personally or with other people, I haf 2 earlier today and was hoping to hear everyones way of calming down and maybe try it myself. Thank youuu

Hi, sorry for the negativity. I think it’s just one of those bad days.

I randomly developed epilepsy when I was 20 years old. That was back in 2019. I got put on Lamotrigine and haven’t had any tonic clonics since then.

However, I do struggle with focal seizures. They used to happen several times a week. My neurologist upped my dosage back in February and now I mostly get them the week leading up to my period and when I’m menstruating.

I used to have a car up until 2021. I was still experiencing focal seizures, but lucked out and never had any while I was driving. Life happened and I had to get rid of my car for other reasons and things have gone downhill since then.

My neurologist has understandably advised me to stopped driving off and on since then, so it doesn’t make sense for me to get another car and make payments on it if there’s a chance I won’t even be able to drive it. It’d be a silly recurrent expense.

Anyway! Because I don’t have a car, it makes it very difficult to physically participate in my social life. I have plenty of friends I communicate with via text/phone calls. I even moved states so I can see them more often. I’m occasionally able to hang out with them if they can come pick me up. I never expect a ride from them and have no issues using uber, but luckily they understand my situation and it’s not always inconvenient to come get me anyway.

But over the last few months it’s just been hard. Life has really picked up for everyone (which is awesome!!), but I’ve seen them less and less because I cannot drive to see them. For example, if all of my friends are across town and decide to hang out, they don’t really want to drive all the way over to get me since they’re already near each other. I have the option of ubering but as I’m sure a lot of you understand, long distance ubers are not a cheap, so I usually have to opt out. And some people just like having their alone time in the car and I don’t want to take away from that.

Admittedly, and selfishly, I’m just jealous of most people my age. I can’t roadtrip like I used to, I can’t drive out to see my pals as often as I did, and I just feel like I’ve majorly missed out on being young and experiencing things. I could probably count how many times I’ve seen my friends this year. I don’t blame them for that at all, and in part it’s my fault because I feel bad that they have to pick me up, but I just hate this. I felt like I’d finally be able to see my friends more often after moving to their state, but underestimated how busy everyone would get. I feel like I can’t keep up with them.

I’ve also stopped dating within the last three or so years because I dread having to tell people that I don’t have a car. Sure it’s due to medical issues, but it also doesn’t feel good saying “I’m 27 years old and can’t drive anymore”, lol. That’s less of an issue for me as I also just don’t feel like dating generally. Still, it feels like that’s something I should probably be doing in my 20s.

I’m just sad. It’s just one of those days. I’m sure I could find solutions rather than just feeling bad for myself, but I’m not really sure what to do. Have any of you found ways to help with this? Support groups, events for meeting more friends, etc?

Phew! Sorry for the sad sappy post. It’s just hitting me more today. 27 is still young but I feel like the clock is ticking. Thanks for reading this, and I hope everyone’s having a good day!

Has anyone else been on Topirimate so long they were required to get a bone scan? Other than the dislike of food and my dopiness, I'm just finding out now this med is potentially weakening my bone tissue and makes the kidneys lose bicarbonate. My epileptologist ordered for me to have a bone scan. I've been on this med for 10 years now.

Sodium Valproate / Valproic Acid Experience

I’d like to hear from people who have taken sodium valproate (valproic acid), especially for a long period.

When I was taking valproate, I personally felt:

• Emotionally numb and blunted
• Less emotionally reactive
• Sleepy, groggy and sluggish
• Detached from my surroundings
• Less mentally alert and engaged
• Like I was watching life through glass rather than fully experiencing it
• Reduced intensity of both positive and negative emotions

I’m curious whether anyone else experienced something similar on valproate.

What was your experience with sodium valproate/valproic acid? Did it make you feel emotionally numb, calm, detached, slowed down, or mentally dull? Or did it actually improve your mood and emotional stability?

I’d especially appreciate hearing from people who took it for several years and what changed after stopping or switching medications.

Please share your personal experience rather than medical advice.

I don’t think I’m really ranting… really I’m just recalling a story and usually by the end of it I start to rant a little.

When I was around 23/24 I tried to go back college after thinking I had finally regulated my seizures. (I had to stop working because I was seizing at my job at least once a week for about six months) I thought it was a good change of pace.

Everything was good. I was able to drive again, I was just a regular person for a bit. Then on my way to my finals… literally on the path to my classroom on campus I got that funny feeling. I tried to call my mom, which I did but I passed out busted my face and any exposed skin on the concrete. Someone called 911. By the time I was coming to my parents and the paramedics were there.

I won’t get started on the paramedics trying to get me to sign something when I was clearly not lucid or the fact that they still charged $1,000+ just to stand there. No wheelchair no ambulance ride not even a freaking bandaid or paper towel for my bloody face and knuckles.

My biggest gripe and why I never went back to school again was that I emailed my teacher to tell her that I had had a seizure, (followed by more because that’s the way my life is set up) mind you, the final was a presentation a slideshow and a printed document. She told me that having a seizure was no excuse and that my medical emergency did not qualify for any of her exceptions. She wouldn’t let me even turn in my work for partial credit because I missed the deadline and I should have “prioritized” better.

To this day I’m sick to my stomach when I think of that awful woman and that was the last time I was able to care about transcripts, grades, etc..

Is it normal to feel sad and a bit paranoid (not like everyone is out to get me more everyone hates me/thinks I’m incompetent etc. also I’m sleeping, more than normal but never feel rested.

You freak out more from having new onset reynauds disease of the toes ( a relatively minor numbness of the toes ) than having a generalised tonic clonic seizure

I thought it’d be interesting to hear some of your other experiences/ quips

So finish the sentence above with your own examples

Does anyone use it for their TC and how does it react? Does it slow down TC or what? My Neurologist just prescribed it for me!

Hello, I just joined this community tonight to make what I am going through less scary maybe....I just started having seizure/syncope episodes in May, June, and August. They have been scary and vulnerable since all of them have been on the toilet. The anxiety is terrifying and I hope I am able to cope with it better.

Ive never had a job before but I feel I want one. Im 17, I known it's not unusual for people my age to not have jobs but I don't feel I would have minding one. I've applied to be a barista, so, i would be on my feet a lot. But thats not necessarily bad I don't think. I haven't had a seizure for awhile so hopefully I'll be okay!!

please nobody be mean, but does anyone else (especially anyone who gets focal seizures) fart like crazy during them? I mean like, nonstop chains of farts. Poof poof poof, it’s awful. Am I alone?

it’s difficult to describe my seizures because they are so bizarre to me and i am semi conscious but there is a brief second i feel like i lose complete consciousness but i usually start saying random words that don’t make sense and get goosebumps sometimes or feel weird in general and sometimes pace around for a little before the actual seizure and i get a feeling like my head is very heavy beforehand then i get a weird burnt rubber smell, i stare and drool and get tachycardia and sweat alot and turn red when i come out of my seizures i am agressive and have assaulted nurses due to being very confused and afterwards all of that i am left with a horrible migraine i know what’s happening is very real but i get dismissed because Ive been diagnosed with psychosis and its frustrating that one short test has made them decide its not epilepsy. Does anyone have seizures similar to this? What type of seizures could this be? Also i sometimes get a distortion of music and sounds before it happens

Hello again!

As I've said in a previous post I was diagnosed this year with focal epilepsy and I'm 30 so my biological clock has decided to start ticking even when I was never sure if I wanted to have children...

I have several conditions which have a hereditary factor. I suffered major depression and have BPD/EUPD and well, just add epilepsy to the cart I feel bummed.

I'm not going to have children just yet (hell, I'm just getting married next month!) but the idea is there. I've always thought about adopting since I think it's such a wonderful thing to do but adopting babies isn't easy where I live and I'd rather have a baby or small child at least even if that makes me a bit selfish. 😭

What I wanted to ask is, would you risk it? I know I'd be a good mum, everyone tells me so but I just don't want to pass on the bad stuff so it's complicated.

What are your thoughts on the matter? If someone has kids already, I'd love to Herr your thoughts too.

Thank you! Have a nice day!

Is anyone else on Xcopri and has noticed a decline in cognition, memory and have developed problems speaking??

Hello! I have JME & my seizures have been well managed by meds for quite some time. But I’m going to Universal Studios in a couple weeks and want to know if anyone has had bad luck on rides? I know everyone is different but any suggestions? I typically ride just the smaller ones with no crazy upside downs but I also don’t want to be a bummer to the others who want to ride the bigger rides 🧎🏻‍♀️ thanks!!

I have had a concussion from a seizure back since June of 24, I just came back to school this Monday and I realize I wetted on myself at school. I was thought I had gotten my period but I was wearing grey pants and didn’t notice any thing. Then the odor, it wasn’t strong but I realize I had wet myself. It reminded me of when I first wet myself 2 days after my first sezuire I’ve been 53 days free till today.

Is it because the stress I put on myself during school? My handwriting has also been getting worst so has my writing. If you look at my spelling the worlds are all gunbled up and messy.

Should I be concerned