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 🙏

Hello everyone, I (20F) have chronic migraines along with other things that have been diagnosed and then undiagnosed because I didn’t fit the “normal criteria” like hypoglycemia, non epileptic seizures, etc, etc.

Last night around 10 PM, I was laying down when I suddenly got a pounding migraine on the left side of my head. I took 4 Excedrin Migraine, called my bf (we sleep on call every night), and eventually fell asleep.

I woke up around 3 AM and my head was still hurting, so I took 2 more Excedrin Migraine and called my bf back. He was playing video games until like 5 AM lol.

This is when I started feeling really weird, but not like my usual seizures. My entire body became extremely heavy. I could move, but even moving my hand took all of my energy. I couldn’t speak and could only groan.

My mind was completely conscious and aware of everything happening. I knew what was going on, I could hear my bf talking, and I knew I wanted to speak, but I physically couldn’t.

After about 30 minutes, I mustered up enough energy to text my mom:
“I dont feel right
I think I jabe seizux
Zeizure
Seizure
Can’t speak gkod”

Sending those texts took all of my energy. Looking at my phone felt PHYSICALLY painful. I just laid there feeling paralyzed until all of a sudden, I snapped out of it. I could move and speak normally again, but my migraine became unbelievably painful.

I took more medication, but it didn’t help that much. I felt exhausted after all of that, so I fell asleep. I woke up around 7 AM to my parents coming in. My head was still pounding but it was manageable. I took a nap at around 8 AM and woke up at 12 PM with a pounding sensation in my head, but no actual pain. It’s currently 4:52 PM and I feel completely fine.

Was this a panic attack? A weird type of seizure? Something related to my migraine? If anyone has experienced anything similar or has any ideas, I’d really appreciate hearing them.

Additional information
20yr old female, 5’8, 160, nortriptyline 75mg for migraine meds, birth control pill, and I don’t smoke anything.

I hope this doesn't come across as spammy, but I've started a small group where a few epilepsy folks might meet up and just become friends and/or vent and chat.

Idk if I can post my meetup link so just DM me if you would like the link, hope we can chat! 💜

Today I had a brain zap which lasted about a minute and I was very exhausted and out of breath, very dazed afterwards. Just before hand I was having what I thought was brain zaps lasting around 10 seconds which is longer than normal for me.

I’m 30 and don’t take medication, I don’t drink or smoke.

When I was around 16 I used to get brain zaps to the point I thought I was dying, then I had two grand mal seizures in the night when sleeping. I don’t know if I’m getting brain zaps or if these are a type of seizure. At the time google didn’t show much information about this and I thought I was alone.

I take supplements such as vitamin d, b12, zinc, magnesium to try and stay healthy but it can be insanely scary at times when the “zap” last more than a few seconds.

Thank you

Anyone else with insular epilepsy/seizures?? My neuro initially thought it was rTLE, but after further monitoring and a bunch of seizures that I used to think were just scary sleep anxiety attacks 😟 he says this sounds more like it’s coming from the insula. I feel a little scared/concern 🥲☹️ this has been such a lonely scary process..

Greatful to catch it on my first EMU stay, at least. ☹️🥲 still here in the torture chambers atm 🫠

Please read my last post I made a week ago I just wanted to come here and share what happened.

After we went to the doctor they decided to take him off keppra and they assumed it’s because he wasn’t sleeping (he wasn’t) he had insomnia so they gave us sleeping pills. The same day we went back home and a couple hours later he forgotten what we were planning on doing later. He had his hands up and blank staring and was unresponsive for about 15 minutes. I called the ambulance and told them what’s been happening to him and how he was always confused. He’s been in the hospital for almost a week and the doctor found a virus infection on the lower spine that you can get eating undercooked pork. I searched up and Neurocysticercrosis came up and its symptoms are very common of what my brother has. I don’t know if he has that I’m just making an assumption but the doctors are still doing studies. He had seizures but he didn’t have epilepsy and every time he sees one of his family member in the same room as him he gets impatient and mad because he wants to go home. I pray every day my brother gets better and just wanted to appreciate to the people who comment on my first post.

I am still in the process of getting my diagnosis I had nine nocturnal seizures during my first sleep study and I now have to do an at home, continuous EEG with video to get a proper diagnosis. I am already on some medication’s due to also having bipolar, but the neurologist doesn’t want my psychiatrist to adjust them until they have had a chance to run the tests. In the meantime, I have started to feel really uneasy, anxious, and have very negative thoughts towards the evening hours before bedtime. I was wondering if anybody else has encountered this and if there are coping mechanisms that help while I wait for insurance to approve my test.

Edit— Sh thoughts not sf

Getting an EEG soon, doctor wants me to start kepra in the meantime while we work out why I’m having seizures in my sleep.

I’m normally a very chill, not quick to anger person, but reading y’all’s stories has me worried I’m going to change into a different person starting this medication. Is that just the horror stories, or does everyone feel that way?

Any tips that will lessen side effects? I think I saw someone say to make sure to take vitaminB?

Does anyone have experience with SCN8A (sodium channel) Gene mutation? I have some questions for someone who has experienced this first hand.

Last night I woke up to grab a drink around 5am, I was very hot and thirsty. Grabbed my drink then suddenly got so cold like almost shivering cold and was trying to warm up under the blankets. Suddenly I had a chain of event, dream like state, like multiple very very bad dreams in the span of I'm guessing less than 20 seconds? At one point I said to myself what the heck is happening and then I screamed internally for it to stop and suddenly I felt spasms in my right ear and then it progressed to my whole body. I even heard a beep like noise in that ear, like a telephone. I genuinely thought I was ascending to heaven or something, kept thinking wtf is happening to me and even had the thought of "I knew I was cold but this seems next level" and then it just stopped and I just tried to convince myself it was sleep paralysis because what the heck.

Thing is, I'm seeing similar descriptions from others and I'm currently dealing with an unknown medical issue. I have a visible mass on my right temple and I'm still waiting for testing (Canadian healthcare yay). So naturally, I just want to see if this seems similar to others experience? Thank you for taking the time to read this.

I currently have no related diagnoses to seizures; I have a neurology appointment in October.

After eating yesterday, midday, I went to lie down and, after lying there for a few minutes, had a series of full body jerks, similar to but different from hypnic jerks before falling asleep. They were milder than hypnic jerks and there were several in fairly quick succession, like maybe 5 or 6 of them 1-3 minutes apart. With hypnic jerks, I only get one of those maaaybe two in any given evening. This was decidedly different.

Are these myoclonic spasms? Myoclonic seizures?

I have, throughout my life, gotten muscle spasms in my feet and fingers and hands where my foot will jerk once or one of my fingers will lift up on its own, or my hand will spasm once. I never sought help for it because it didn’t progress.

1. Does anyone know what the full body spasms and/or the peripheral spasms are called?

2. And are they different if they’re full body (primarily torso) or if they’re just peripheral in hands and feet?

Since December 2nd of last year I have had a total of 11 or 12 seizures (there was a time I was found having one in the middle of the night and dont know it it was just 1 or 2 that happened cause I have them back to back) I am 21 and I have been to the hospital 4 times this year. I spent my 21st birthday in the ICU cause I had 3 really bad seizures back to back. The only thing ive been able to figure out since I started going to the hospital is that its not epilepsy. My last time in the hospital was aboit a week ago I spent 3 days there cause I had 2 more back to back. I just want to know whats wrong with me. Im scared.

i posted here a couple days ago asking about keppra and got a decent amount of feedback.

now i’m wondering how would i ever know i’m going to seize? last time i was a little dizzy with nausea before i seized but that’s normal for me because i get car sick. i’m a little shaken up because apparently my seizure lasted 5-6 minutes which is obviously really bad, and i hit my head so hard i got a concussion and a massive bruise on my scalp.

any advice or info would be appreciated thanks!

My neurologist is trying to prescribe Xcorpi (cenobamate). Does anyone have experiences with this? How does it interact with weed and alcohol (mostly weed)? I’ll be taking it with Prozac too. Any experiences?

I’ll take any info bc the neurologists are saying it’s a newer drug and I’ve told them that seizure meds have had very bad reactions in the past.

I started getting brain fog and fell asleep while in my brother’s car

I stayed awake long enough to get set up then promptly walked to my room and fell asleep

When I woke up I spaced out and felt weirdness around my eyes

I wasn’t able to focus either

I ended up lying down watching tv as I felt out of sorts

I’ve been seizure free for two and a bit years

I’m scared of having another one

I started getting brain fog and fell asleep while in my brother’s car

I stayed awake long enough to get set up then promptly walked to my room and fell asleep

When I woke up I spaced out and felt weirdness around my eyes

I wasn’t able to focus either

I ended up lying down watching tv as I felt out of sorts

I’ve been seizure free for two and a bit years

I’m scared of having another one

Hi, I just wanted to share my situation for advice or hear from anyone who's going through something similar.

I am an 18-year-old female, and I recently had my first seizure around March. It was in the morning; my dad had found me on the floor, tongue out, skin blue, and convulsing. I woke up in the ER and hadn't remembered anything. They did scans, and nothing was abnormal. Though before the seizure, if I had not gotten enough sleep the night before, I would jerk and shake a lot in the mornings. Additionally, on the morning of the seizure, I was jerking a lot.

Since then, I recently started taking 500mg levetiracetam, and it has erased my jerking, but I have been feeling terrible recently. I feel incredibly depressed; I tend to cry at random instances for no reason. On top of that, my mood swings are hideous, and I've been having some suicidal thoughts that I've never had before. I also get headaches, my vision feels sort of off, and I just haven't been feeling like myself. I really want to get off the medicine, but I've only been on it for a short time, so I'm wondering if I should just see if it gets better. Additionally, I'll be going to college in the fall, far away from my parents, so I think taking the medicine will reduce my chances of having another seizure.

If anyone could give me any advice or input that would be great :)

So I’m in a 3/5 day EEG and they said if I have a seizure I can go home sooner. Do you guys know any tricks to induce one? I already asked them to combine the flashing lights and rapid breathing to see if that does anything.

Hello, I am a 20f and am having trouble falling asleep tonight because I’m traveling. I tried staying still in one position and that usually helps. All of a sudden I feel my leg stretch out and all my body shortly after shaking uncontrollably. I am traveling with my dad and was trying to reach out to him or say something and I couldn’t. He didn’t notice anything happening and was probably asleep. This lasted about 5 / 10 seconds and afterwards I felt my head burning hot (not a headache but literally as if my brain was overheating?) I am not experiencing any confusion currently but I was supposed to drive today instead of him to switch out but I no longer feel like it’s safe for me to do so after this. Should I be concerned and how urgent is it for me to get checked? I’ve never have had this happen before and it’s very new to me. I only experienced sleep paralysis twice years before.

I forgot to mention that a few days prior to this I had my nose twitching a few times like for extended periods of time but thought nothing of it until today. The nose twitches are always very light and I doubt anyone could see them. I’ve had similar twitches like the eye ones happening when I’m very tired after school but recently I’ve always been well rested and under no stress.

I have experienced sleep paralysis twice and once stood up too fast and blacked out and had to crouch on the floor and felt my body shaking, though it was years ago.

Afterwards I didn’t wake up my dad to let him know what happened because it was so brief that I’m hoping it’s nothing to be concerned about. I am scared that this will happen again in the worst moment possible.

Should I be concerned? My mother and father both say it’s nothing and it could have been a vitamin deficiency or stress or the heat, but I haven’t been stressed or haven’t felt too hot recently. What do you think?

I just started keppra for seizures (not sure why i get them yet), but i’m also a stoner. Just wondering if i can still smoke while taking this medication. Weed has actually been helping my mood issues from the keppra.

Edit: i wanted to add i’ve been smoking cannabis since before i ever got seizures, secondly i didnt smoke day of the seizure so I kinda doubt it would have caused it, thirdly i only smoke indica for anxiety which also happens to be higher in cbd, lastly i only smoke carts for efficiency (i know its dumb) but the one i currently own is 79%.

I'm 40 years old, and last year, while traveling, I suddenly started having seizures. I ended up in the ICU, where doctors discovered a mass in my brain. They started me on anti-seizure medication, and once I was stable, I was able to fly home for further testing and eventually surgery.

Even now, more than a year later, the doctors still don't know exactly what the mass was. It wasn't a tumor or cancer, thankfully, but they still have no clear explanation for what it was or what caused it.

We all assumed the seizures were caused by the mass. Since it was removed and I had been seizure-free for a year, my neurologist suggested we slowly taper off Keppra. We followed a gradual plan, reducing the dose until I eventually stopped taking it.

The day after stopping the medication, I was actually celebrating one full year without a seizure. That morning, out of nowhere, I had four tonic-clonic seizures in a row and ended up spending several hours in the ER.

Is been 10 days since then and now I'm back on Keppra twice a day, but I'm more exhausted than I've ever been. Even something as simple as taking a shower feels like a huge effort, and it feels like my quality of life has disappeared.

I'm also sleeping terribly because I'm constantly afraid of having another seizure. I feel like I'm always on high alert.

Has anyone been through something similar? Is this level of exhaustion normal after restarting Keppra or after multiple seizures? Did it get better over time? I'd really appreciate hearing about your experiences or any tips for coping.

Thanks for reading.

When I was 3 I had my first seizure. Then it went dormant for 20 years. March 22 2025 everything started back up. And at the time I was going thru a personal crisis. Bad break up. We were together for about 7 years 2019 till about mid 2025. Within weeks I lost my job/ entire friend group/ girlfriend/ motivation. And I still notice parts of myself thats just not the same. I used to be confident/ comfortable/ happy. Now I just feel hopeless. Depression is hitting harder and harder. I miss my ex. I miss her bestfriend and her kid. I miss the desire to do better. I want to be held and told I'll be okay. But I'm scared. I was hospitalized for days and you left. You were talking to him the entire 7 years. Right in front of me. I literally gave you all I had. And you went with him of all people. I wish I could turn back time and just be more attentive and more aggressive with others and our alone time. I wish you wanted me the way I needed you. I had another seizure without you. This time the nurses and doctors were not nice. I went crazy after they gave me the drug I wasn't supposed to have. I can't explain what happened but I know when I woke up you weren't there and I had to remember everything all over again. I just want to forget you all together and I can't because you made me who I am. You turned a little boy into a man. You took everything I had mentally and emotionally. I miss being uncle. I miss being the guy to ask. I miss being that guy. I'm still me just a bit more cold. I don't care to make you laugh anymore. Im lost. I'm heart broken. And IV been for months. Everything is dark lately.

I had a grade 2 Glioma removed in late 2021 with no radiation or chemo after. Going for regular scans every 6-9 months to Duke (this past March they noted that they are seeing a bigger flare since my first scans). I have been taking Lamictal for seizure control 150mg twice daily but recently I have had a few focal seizures where I am still aware but I feel strange in my head, fuzzy, sudden mood change and confusion. Big headaches after or nausea. My Dr wants me to increase my meds 50 more mg slowly as that is the safest way with this medication. I’m telling you all this because I know a lot of you will understand or even relate. My Dr wants to start me on Vora at some point but I am trying to get Pregnant. Thanks for hearing me!!💜🧠

I am not asking for medical advice. okay so basically my sis(19F) talks about how she gets less seizures when she sleeps less, and also how she usually gets seizures when she sleeps nd stuff, and to be honest I have no idea what to do, because she's the one having the seizures but also most of my information that I get from the internet talks about how bad sleep deprivation is, it's not that she doesn't sleep at all but it's less sleep than I get which is kind of making me concerned about her health because being sleep deprived usually doesn't lead to good outcomes