r/seizures

Has anyone done one? I am recommended to do one but not having insurance they want $1k. And all my research shows i will pay for test that will likely not give me results or answers. And I am gonna be pissed if I pay money like that (that I do not have really) and not get answers. I am suspected of a sleep apnea causing sleep deprivation leading to seizures in my sleep AND during the day while driving my car.

Just need some insight on if its worth the financial risk?

Family member has been on Keppra and Depakote for about a month and a half for seizures. Having anger outbursts, sleep issues, and changes in personality. Neurologist today said stop the Keppra now and no need to wean. The dose is 250mg a day.
Has anyone else been told to stop cold turkey and didn’t have issues from it? Worried about returning seizures. Dr said it’s a low dose and hasn’t been on it long so it should be okay and to just watch for seizures.

Hi! My son is 11 years old and has had seizures for 3 years now. He's been on keppra for 3 years and every dosage adjustment has made him insanely aggressive. My sons amazing teacher would track behaviors and noted that his most recent uptick in behaviors was after he went up on his dose. And im talking stabbing hitting throwing heavy objects at people aggression.

We got him into a psychologist but she thinks its the keppra and his Dr allowed us to trial depakote.

She said its up to me, can I hear your experience with depakote vs keppra? I would love to have my non aggressive kid back but not at the price of having seizures again.

I have an EEG tomorrow and the following 2 days. I've been having seizures for 3 years, and only now am I being put on medication. However, what does an EEG tell a doctor? I know the point is to induce a seizure in hopes of catching something, but how do I increase my chances of having a seizure during these EEGs? For 2 of them, I have to be sleep deprived. However, I feel weird hoping for a seizure.

I’ve had somewhere between 12-15 seizures in the past 3 years. I am seeing a neurologist as of recent and am on Keppra. However, during my EEG I felt twitching and involuntary movements like if I had just been electrocuted. I felt I was about to lose consciousness. My jaw felt like it does when I eat sour candy. What are common/your signs that you’re about to have a seizure?!

I think they're confusing it with a concussion.. I had a seizure earlier, it was a little longer than usual and I was alone. (Family was home but I was in my room and they didn't notice)

I suddenly felt off but didn't have enough time to lay down properly. I'm not hurt anyway. It was hard to come back to my senses but I eventually sat up and texted my mom to tell her what happened. Family is always understanding.

Anyway, I got into bed and had a nap. Time is all warped. I woke up and told some online friends what happened, that's when some of them said it was dangerous to nap after a seizure because I might pass away. 😐 so.. yeah I thought that was only concussions. Some kind of injury that needed the head to be awake.

Am I not properly informed..? My seizures aren't often and they're usually small but. I don't want to be clueless..

I'm under the care of a neurologist and I know n9one can diagnose via internet (!) but I'd love to hear some thoughts from anyone who's experienced anything like this.

TIA!

40F. Not on any meds. Lifelong physical, medical, social and emotional trauma, but the symptoms I describe below occurred after a major traumatic event and are ongoing.

This happens a lot during the day, but most often at night when I'm trying to sleep. I will have the sensation of almost physically entering the surrounding background noise. I can only describe it as extreme disocciation or a seizure-like episode (?). Sometimes I'll realise I've been in bed for hours, neither awake nor asleep, but in this kind of "half-there" state. The sensation of "entering" sounds is abnormal and scary.

What's going on? Which meds, if any, may help?

TIA.

I have had non-epiletic seizures since Jan 2026. I have been told by some doctors that its FND (no other FND symptoms though) and by some that it is caused by brainstem compression due to CCI caused by my elhers danlos syndrome. My seizures are reliably triggered by my neck positioning and improve significantly with a neck collar.

I have been getting more frequent seizures over the last week and its getting harder to be left alone (had a fall) or reliably eat safely. They last for less than a minute but can roll with an aprox thirty second break between them for an hour. Yesterday they rolled for an hour, then for thirty minutes. I had 5 whilst sleeping last night. Today i had 62 seizures between 9am and 9pm as observed by mum. Is this concerning? When does it warrant assessment or become an emergency? What should I do?

I was prescribed Kreppra at the ER for tonic clonic seizures last week and have been teary ever since. I already take 400 mg. of Lamictal for bipolar and use MMJ for PTSD. I cannot get an appointment with my neurologist until February. Has anyone experienced such a side effect from Kreppa? I plan to take only the PM dose this week to see if it doesn’t affect my mood.

Hi, I am a 36yo woman. I am searching for answers for the seizures I have had. I have never had any idea why these are happening and I’m hoping someone has had similar.

I have had three grand mal seizures over the last 18 years. The most recent one was a week and a half ago and the last one before that almost 15 years ago. Both of these seizures happened at 4 weeks postpartum AND both in a grocery store. The auras are the same, they seem to be visually triggered. I say this because it’s almost as if I’m looking and my eyes cannot focus. They are skipping around in my head uncontrollably. I can sometimes just look down and feel normal again but in the case of these three seizures I could not.

I was previously on both Keppra and Topamax and went off of it about 5 years ago to have more children. There’s just some similarities and differences I can’t out aside. Doctors have said over the years that maybe they were migraine related (had a migraine for the first and second ones). I had auras for all three. I have had three children, two of which resulted in a seizure postpartum. By blood pressure was not high so eclampsia is not the cause.

First pregnancy was normal no major issues. Had severe morning sickness for weeks and had auras towards the end of the pregnancy that did not result in seizures. Also had severe migraines towards the end. Labor was induced. This child is now 15.

Pregnancy two amazing, no sickness, hardly any migraines and totally healthy postpartum. Labor was spontaneous. This child is now 3.

Pregnancy three, severe morning sickness. Migraines throughout and auras towards the end that also did not result in any seizures. Labor was induced. Child now 5 weeks old.

At the most recent hospital visit, they said everything was normal. I was likely dehydrated or sleep deprived. My blood pressure was a bit on the low side but not too low. My platelet count also on the low side but nothing anyone seemed concerned with. Ct scan was normal as well.

Are there any tests I should be asking for? Is there anything I should be looking for in the results I do have?

Has anyone experienced anything similar and has any answers? I am back on Keppra and don’t want to be on medication for ever (also breastfeeding and hate that it’s in the milk now).

Anything helps!
TYIA

Please read this

My partner age 34 Male has been having the strangest "episodes" and we've gone through quite a few routine emergency tests but we keep being told it's anxiety by doctors when both of us know it's not.

He's now had 12 of these "episodes" over 7 weeks and they completely vary in time of day and activity. Sometimes it's the middle of the night sometimes it's while we're in the cinema, sometimes it's while we're on a walk.

Here are his symptoms:

- Starts with Chest pain in his left side where his heart is

- Then it can move down his left arm

- Then he instantly feels so nauseous

- And dizzy

- Then comes the confusion and quietness

- His hands go completely white and cold

- Sometimes his lips go blue

- then his legs shake uncontrollably

- and after he feels so tired and drained

he's had ecgs, chest xrays and nothing found. If anyone has gone through something similar and has advice, please do reach out. We're still in the process of ruiling out anything heart related but somebody else mentioned this could be seizure related so thought id post on here.

22F i’ve never experienced sleep paralysis or a seizure in my life i woke up after a less than 1h nap on my left side, muscles completely locked up, numb hands, eyes shaking back and forth super fast while closed, my heart racing and pounding super hard,and unable to move for maybe 5-10 seconds couldn’t tell if my body was shaking or not. My first thought was that i was having a seizure. has anyone experienced these symptoms?

I wanted to share my journey with this subreddit as over the years I have had so many doctors, neurologists, anger, near death experiences, and nobody would listen to me. This week I was proved correct and I feel the need to spread awareness and hope.

Before I begin; there is NO genetic history of epilepsy in my family, ZERO. I started having Absence seizures at the age of seven but nobody quite knew what was going on until we met with the first neurologist of many. Then we found out I was having at LEAST 250 absence seizures a day and he was worried about my life and brain damage because of this. My wonderful mother tried a million different seizure meds all of which had AWFUL side affects. You name it I have tried it; the week before my first ever period I had my first ever grand mal seizure. Obviously my parents were freaked out and rushed me to the hospital where they sent me to Mayo Clinic where I was in and out for the next 2 years. They tried a million different things and combos of meds until we landed on Ethosuximide and Lamotrigine at age 14-15 I believe. This stopped the seizures however the side affects of lamotrigine made me very depressed and not wanting to be here. But my neurologists said it was either this or I would die from a grand mal. So we did that for a few very hard years. At age 19 I had my own place with my fiance and one day I felt something change in my brain and body. I do not know how to describe it but my brain felt awake for the first time I could remember. I felt amazing and my gut told me the seizures were gone. Obviously just to be safe I kept taking my meds and scheduled to see my neurologist next month. He advised against stopping the meds of course but I wanted to try. I weaned off of them very slowly and for the next 4 years I never had a grand mal seizure. I watched fireworks and horror movies, stared at lights and had no seizures. At this point I realized my period stopped the same week the seizures did. Then 2 months ago my period came back and the week before it came back (my ovulation and estrogen spike week) I had 3 back to back grand mal seizures lasting 3 minutes each twice in that same week. I was rushed to ER and went to a million doctors almost yelling at them saying it’s connected to my ovulation and all of them said I was wrong. Nobody had EVER mentioned catamalenia epilepsy to me before until I saw a Reddit post here about it. Since then I have spoken to my new female neurologist and said if you do not help me I am getting a hysterectomy because I will not live to see 24 if you don’t. I am now on birth control and clobozam and I feel confident I will be seizure free from now on. If you are going through this, where the neurologist isn’t listening to you, where nobody is helping you, DO NOT STOP FIGHTING. You know your body they do not. Obviously always consult with your doctor first, but trust yourself first too. It IS possible. Thank you so much to this subreddit for saving my life. I love you guys and I love this community. If you have any questions please ask ❤️❤️

My daughter who is 2 year 2 months just has two febrile seizures 4 hours apart. She was sick with a high fever the day before me up to 194. The next day she woke up happy and 99.4 temp. We were eating breakfast an hour after she woke up and BAM. She collapsed and started seizing. My husband and I called 911 and she was brought to the ER where her temp was normal and they said it was febrile. They sent us home and 20 minutes after we got home she had another one. we brought her back to the ER where they admitted her to the neurologist. She had a 24 hour EEG and an MRI that came back completely normal.

To say I am traumatized is an understatement. I’m now terrified this will happen everytime she is sick. I don’t know how I will get through this cold/flu season approaching. I know I have to stay ontop of her fevers but I can’t shake this horrible fear that she will keep having them. Has anyone else had this? Where there was more then 1? Did they always get them? I need to hear real life experiences to help me prepare and move forward.

Has anyone delt with them or their child not able to have an EEG due to severe panic and sensory issues not allowing them to catch nocturnal seizures on an EEG. In that situation what would a neurologist do?

As I said in my post a few days ago, ive had 12 seizures since December and in march after my 5th j applied for disability and was rejected. Ive been to the hospital 2 times since and am not allowed to drive for atp I dont know how long I think 6 months. I can sometimes feel an aura all day but others it just happens and I wake up some time later. I want to apply again because I dont know how well or consistently ill be able to work and its starting to worry me a lot.

How often is this occurring for you? I seem to go weeks being fine and then I have a day where I can have over 7. Today I’ve had one on the hour almost every hour.

Hello all! Nothing showed on my short eeg so I will be going to an epilepsy monitoring unit for a few days. What are good things to bring, and what things weren’t worth bringing? Also I do bead work, do you think I can bring that stuff including beading needles or is that not allowed? Thank you 🙏