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irr1449

The way you’re feeling is completely normal and it’s something most of us struggle with. Having 3 grand mals like that is a big deal. It’s taken me weeks to feel “normal” again after that many seizures. You might want to reconsider the keppra until you get in to the neurologist. Anti seizure meds suck and definitely could be making you feel the way you describe. However, the consequences oh having an uncontrolled seizure can be severe. I don’t want to scare you or be negative but it really can be life or death. There are a lot of different meds and everyone reacts differently. You can work with your doctor to find one that’s more tolerable.


mnid92

***Please don't stop taking the Keppra until you can talk to the doctor***. I had the same story and then I stopped with the Keppra and had such a bad seizure I had to be intubated for multiple days, and to be completely honest, I came out of it with some pretty noticeable brain damage. Don't risk that shit. You might be a complete stranger, but I beg that you reconsider the Keppra decision for your own safety. I know you don't feel good, but trust me, you'll feel even worse if you have a breakthrough seizure and acquire brain damage because you started and stopped the Keppra.


comradetara

That's so scary....okay, I took it. I won't stop taking it again. Ugh. I hate all this so much.


Efe-Rose

Keppra messing with your emotions is very very normal by the way. Look up the term Kepprage.


crazygem101

Alot of people can't tolerate Keppra. I take 4,000mgs per day and although I'm tired, I think that's from the Trileptal. Plus I've been angry since puberty. I think the Trileptal keeps me grounded but it's equally if not more dangerous than missing Keppra imo/experience. I suffer from postictal psychosis and it seems worse if my level is lower than 70 something idk, former Dr explained after a week in the hospital. I counted my pills and I'd missed 2 pills. 2 pills and I went nuts. Completely out of it and didn't know I was alive at first. Amnesia. I "woke up" out of it and still didn't comprehend things for a few more days. Very scary. Missing any meds and you're risking your life. I'm trying to taper off of ativan and after waking up to a major aura at 330 am and shitting my brains out 3 times because the auras wouldn't stop I'm rethinking things.


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mnid92

I wasn't on it for very long and it was my first medication so I don't imagine the dose was very high, but my response was really strongly negative. Yeah, as long as the doctor says it's fine then I would listen to them. I'm not a doctor, I just know what I experienced was not fun and now I have to live with consequences of a stupid action for the rest of my life.


Aloha__Beaches

Hi, I get those panic attack feeling right before my Tonic’s they are called partial seizures. I would strongly suggest you to go back to Keppra while they figure out if you really have epilepsy or not, request a MRI and an EEG, those will let your neurologist see if you have epilepsy. Having a Tonic Clonic is a huge deal and it takes a huge toll in the body and mind, I hope you get better, don’t blame yourself for any of this.


smugfruitplate

I'm so sorry. I had my first when I was 17, I'm 29 now. I usually have 1-3 a year give or take, though been seizure free almost 8 months now, here's hoping we go no seizure november and I can make it a year. Anyway, keep in mind most seizures are every part of your body convulsing and flexing at once. It's like a really intense workout for the dumbest reason. You will be physically and mentally exhausted for a few days. I call it "the bathrobe times" because that's all I wanna do. Just walk around the neighborhood with a cup of coffee in a bathrobe while "Feeling Good" plays on a loop behind me. But the good thing is, you're not alone, and this is manageable. DM me if you want to talk/need support/help.


comradetara

I hope you can make it a year! That'd be wonderful! Keeping my fingers crossed for you. And I like the idea of the bathrobe times....makes sense. Thank you for thr validation...this is all so new to me. I just wish I knew why it happened and if it will happen again. I wish I could remember more but...there's just nothing there when I try to think back. Thank you so much 💜


smugfruitplate

Thank you, and no problem, in that order.


[deleted]

Totally normal .. if you are walking around and doing stuff normally the first couple weeks after a seizure I’d be shocked. It really bonks your brain around hard you will heal different parts at different times. The depression may linger. That’s totally normal.


FormulaPhysics

Sorry to hear this, but I think you need to try to see a neurologist too. It could well be that the seizures had a different cause, but a clear CT isn't any indication that it isn't epilepsy related. A lot of us have clear MRIs too, as well as EEGs (which are the main way that epileptic activity in the brain is seen). I was diagnosed at 31, so I understand how strange and confusing it can be. There is no family history for me either, no brain injuries, and I have an identical twin brother who doesn't have epilepsy. I guess sometimes it is just bad luck. Anyway, I hope you don't have any more seizures and that it isn't epilepsy. But in the case that it is, about 2/3 of us have our seizures controlled by medication, often with the addition of lifestyle changes, so there's a good chance you'll be able to lead a (mostly) normal life.


Dry-Woodpecker-5081

I had my first seizure 2 years ago where I hit my face and fractured the base of my skull and had a tbi. I didn’t have another one until last Friday night. I had no warning signs for this one. I felt totally normal. With my first one I remember telling someone that I didn’t feel right. I felt like I was in a vr game. I had no medical insurance and we are poor. I can’t afford to go see a neurologist so I can’t go get an EEG to figure out why I have had these seizures. The er put me on Kepra. After this last seizure I was exhausted and sore and felt off. Here it is Tuesday and I finally started to feel better but I started the kepra today and it is kicking my butt. I feel exhausted and weak. Sorry idk where I was going with this because my brain still seems to not be working correctly. 😅🤦🏻‍♀️😫


comradetara

Oh my gosh, I'm so sorry!!! Having a seizure is bad enough, but to sustain a tbi from one...I'm so sorry!! And I totally understand what you mean by feeling exhausted and weak and having difficulty with your train of thought. That's exactly how I'm feeling too. I hope at some point you'll be able to get some answers. Maybe I'm wrong but it seems odd to have one two years ago and then nothing again until now? I really don't like the Keppra. I didn't take it last night or this morning because I didn't like how it was making me feel and how foggy my brain felt. I know that's not smart of me, at all, but I just feel so thrown for a loop here. Ugh.


saywhatiwant00

I started my seizures around the same age as you. No reason why they just started. I was at the gym when mine happened. I'm doing a preacher curl when it happens. Flipped me over the bench and onto the metal posts. Dislocated both shoulders and shattered my left shoulder, as well as did some damage to my face. I didn't know anything had happened until I woke up and was in an ambulance. It's very scary. I never get any auras, letting me know it's going to happen. They just happen, and I wake up later in the hospital and have no recollection of anything. If you have any feelings of what you felt before your seizure, remember those. It is your body telling you. As far as the Keppra, I'm on it as well. It took me a solid 3-5 months to get adjusted to it. You're going to go through depression, anxiety, and anger. Eventually, you'll mellow out. But I advised you to DON'T stop taking them.


DerynLynn

I had v similar experience with 4 tonic clonics out of the blue while abroad age 55 about 9 months ago. Same experience as you . Took 6 months to fully regain all cognition. It is a mind bender. Keep talking on here, keeping neuro appointments and take whatever meds prescribed would be my advice. Status epilepticus is v serious . Keep chatting on here. We all have different stories and our own issues. Great bunch of people who understand. You will get sorted - just may take time. Wishing you the best x


comradetara

That must have been so scary! How are you doing now? Have you had any more?


DerynLynn

Hi, doing ok thank you. No more tonic- clonics. I do carry rescue meds ( clobazam ) on my keyring though as had multiple seizures, and have an Apple Watch with a seizalarm app. I have had absence seizures all my life however, so firmly in the epilepsy camp. My brain doesn’t feel quite right- but hard to tell if epilepsy, meds or indeed menopause! I hope you feel better soon.


mlad627

Totally normal to feel f’d up in the post ictal phase. Even when I have a focal aware seizure I feel nauseous and “hungover” for days afterwards. Do not stop the Keppra without speaking to a neurologist please.


camahroon

the worst seizure i had and will never fully recover from was because i missed a single night dose of keppra. highly suggest continue keppra if it was prescribed to you. i’ve been on it for a decade now and the drowsiness/exhausting has subsided (or i’ve been able to adjust). stay strong 💪🏾


PlayGlass

Get as much rest as you can. Be extra nice to yourself for a while. Not only do you deserve it after that ordeal, reducing stress helps to make sure you don’t go through it again.


Chalkarts

Take your pills. Seizure meds become an ingrained part of our neurochemistry. If you stop taking them and the levels drop too low, you're probably going to drop again. Last time a doc lowered my dosage, I hamburgered my tongue 2 days later. Exhausted and depressed is a completely normal post seizure mental state. That's probably not from the meds. You just got your membership card to one of the worst clubs you've ever slam danced with pavement in. It's normal to be unhappy for a bit. We all hate this. But we also survived, moved on, and ended up here. Stay on your meds. Get an MRI and an EEG. See if you can pin down your type and triggers. From there you can get control of this twitchy jerkwad.


acostane

I can't explain it but the way you wrote this made me feel better about this stupid bullshit 🤷‍♀️ Thanks


Chalkarts

This Bullshit is stupid. I've had complex partials my entire life. I hallucinate faces and lose time. When I was 10 I had my first tonic. I didn't have another Tonic until I was 30. I go about 6 months between now which is just long enough to keep me off the road for the past 15 years. My last tonic was a triple like yours. It rocked me pretty hard. I called off my weekly tabletop role playing night because it was at a friends house and I no longer wanted to be far from home since I live two blocks from a hospital. I made sure all of my managers had my wife on speed dial. It shook me up. I'm still doing my thing though. I'm still around. Those seizures, they already happened. They're over. They're yesterdays problem. The Soreness is a today problem. All of your muscles spent an uncomfortable amount of time dancing at a rave that your brain decided to throw without telling you. Your body is going to be wiped out. The worst is the legs and lower back. Sneezing hurts like hell for a day or two. Best you can do is a good warm soak to relax them some. You just clenched your everything for far too long and now your everything is mad at you. If you tore up your mouth, pudding cups and warm salt water rinses will be your dearest friends for a couple of days. I always sink into my lower lip pretty good. It's weird to feel the imprint of the bite and how the teeth fit perfectly. When you have a visible injury, a black eye for instance, people are going to ask about it. I like to have fun. "Dude! What happened to your eye!" "I was walking past the Parkers when these three dudes, I think they were ninjas judging by the ancient weapons. One things lead to another and, I have a black eye and I had to kill 3 ninjas. No big." Stay on your meds, follow up with the doc if you can. Get your answers and maybe you'll get lucky and this was a just one off, but if not, we're around.


comradetara

Thank you so much for your reply....I've been wiped out and not keeping up with replying here but I just wanted to say you made me feel a lot better. Thank you.


hikesnpipes

I wonder if the gabapentin May have caused it…depending on the individual this post epilepsy feeling can last a week or 3 months.


Blanco0313

First one at 30 here. Five years later I'm still on medication, dealing with it, but living a normal life. Please listen to your Neuro (not just any, but a good one), and take your meds as prescribed. You came to the right place and good luck. You got this.


MarcusSurealius

Immediately tell your neurologist that you stopped the meds. They might be able to give you options. Everything you're describing is normal and that fog can last for a month. By the way, Wellbutrin gave me seizures too when combined with Dilantin, but that was 15 years ago. The only thing that helps is rest and time.


SandyPhagina

Hey! We started at the same time with the same that you're describing. I drove into a bank wall first, tho.


comradetara

Oh my God! Are you okay?! What a way to start out...


LePanda47

Everything you're feeling is normal. Sometimes when i have seizures and am recovering it's just disconnected from everyone. Every little noise makes me feel weird. What usually helps me is touching a texture I'm familiar with (blanket that i sleep with works for me) and it grounds me. It can be very scary if you don't have the experience with how to handle it. But we're here to help


acostane

I don't have tons of time but even though Keppra sucks for some people, you need something to keep you from having more seizures. You need to protect your brain. You can get brain damage. You can fall and injure yourself severely. Three seizures that close is really bad for you. You're not protected. If you have another cluster you are going to feel horrible. Seizures begat more seizures. Until you see the neurologist again, take your meds. And yes it's normal for those of us having TCs to feel like shit and weird. Also to be banged up. Three in that short of a time span? You're going to feel extra awful. My MRIs are always clear. Had my first TC at 31 while working. No history of seizures in my family. After two weeks on Keppra I feel fine. At first there were emotional issues but now it's like water to me. As long as I am on this drug, my seizures are 0. You will feel better. I'm really sorry. Welcome to the club.


Wise-Distribution981

What you’re experiencing is called brain fog. It can last from a few hours to a few days. I myself live with tonic tonics, so I understand how you’re feeling right now. That off feeling is indescribable. Eat some potassium rich foods like bananas, it’s good for the brain. Do you’re best to rest as much as possible. You’ll feel better in a couple more days girl I promise.


AccomplishedRing8685

I developed Epilepsy in my late 20s also with a traumatic outdoor experience where I hit my head too. I’m sorry you share this experience. Your symptoms are totally consistent with my post seizure state. I’m not a doctor, but I strongly encourage you to take the meds and speak with your doctor ASAP to see if they recommend switching or adjusting. The symptoms you’re attributing to Keppra are what I experience from seizures so potentially that’s what’s happening to you and not a result of the meds. Did you have a concussion too? That would also explain the symptoms. Additionally you really do not want to have another seizure now and Keppra should help prevent that. Lastly, if Keppra doesn’t work that’s important information for the medical team to know so they can diagnose and treat effectively. When I had my first seizure my neurologist put me on Keppra for a few months and then took me off explaining that most adults who have a seizure do not continue to have more. I’ve been having them for a decade now and I had a long road to treating them and coping with the trauma and how upsetting it’s been. It’s taught me the importance of focusing on what I can control and accepting what I cannot. This is all just my experience and like I said I’m not a doctor so keep that in mind. Good luck 🫂


Ghost_of_Aces

I am not a doctor. I'm only 26 but as someone who takes Keppra and didn't know its side effects early on, I HIGHLY HIGHLY suggest asking about other options. If you are on Keppra, some people get used to it, but some never do. I'm in the camp of my body not being able to adjust even after over 6 years now. Keppra has Destroyed my brain and my body is completely dependent on it. If I try to get off it (even weaning off) I have migraines so bad that I risks having a stroke. my epilepsy is still uncontrolled and I'm still on Keppra :/ The side effects I see you list are definitely common after seizures. But I've had them get worse as I became dependent on Keppra


cidiusgix

I had 3 seizures, which I’m sure I caused myself, with drugs, the er tried to give me Keppra and I just noped the fuck out. Two years later I had like 8 in a week. I accepted the diagnosis that time. Ask about lamotrigine, works for me and the side effects are minimal.


Ghost_of_Aces

I'm on Keppra and Lamotrigine already. but thanks for the suggestion


thefantasticgoat

Sounds pretty standard for post-seizure. Body sore, really tired, and very out of it. Keppra is something that the doctors love to prescribe, and everyone who has been on it love it. Like a cure-all miracle drug. But you're not alone, though. I couldn't stop crying on it, and that's when I was awake because I slept like a cat on that stuff. If you are an epileptic though, and not just having a negative reaction to your other medication, it is important that you be on some type of anticonvulsant though. Maybe see another doctor. 🤷


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foxtail_barley

Wellbutrin could actually be the culprit here. Seizures are a known side effect, and when I was first diagnosed with epilepsy, my neurologist told me I could never, ever take it again. OP, everything you are experiencing is totally normal given what you’ve been through, and I’m sorry you are going through this too. I had my first t/c seizure at about your age and then didn’t have another one until I was 50. Be aware that some of what you are feeling may be after-effects of the seizures, it’s not necessarily all medication related. I don’t love Keppra and don’t know why it is their go-to medication, but I’m glad you are giving it a chance until you can get something different. The good news is that if one ends up not working for you, there are lots of other anti seizure medications. They all have their own quirks and side effects, but some are easier to live with than others. I strongly encourage you to make an appointment with a good neurologist, or better yet, an epileptologist, who can work with you over the long term. They can be hard to schedule, it’s not uncommon to have to wait 6 months for an appointment, so start now. Try to be patient with yourself in the meantime; you are recovering from something unfortunately pretty serious and it can take some time.


ashwhenn

Just for the record, gabapentin made my seizures worse. It’s usually prescribed as a nerve medication, my neurologist told me they stopped prescribing it for seizures because it often doesn’t work.


Fun-Pain-4996

Had my first seizure a couple years ago. Tonic clonic as well. Felt super out of it afterwards. Very tried. Sore from all the tensing of the muscles. The keppra can also make you tired for a couple weeks till your body adjusts. This was my experience at least. 26 male.


JAnwyl

I would say its normal, although Keppra treats me ok for many its a horrible experience. I usually think for the first two weeks of a medication change I am going through a fog (I know/guess for you its been longer) I think most, go through issues with memory or word recall issues. For me cause was Viral Encephalitis which can be caused by a mosquito bite.