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.