Chiari malformation and seizure like activity. What is it?

[AmberM87]

I was diagnosed 2 yrs ago with chiari malformation type 1 from a car accident I was in where an 88 year old man hit me going 55 mph while I was at a dead stop, my brain moved down a cm bc of the accident. I've been on countless medications for my migraines and last yr in march I started twitching when I'd be laying in bed, it started off once in awhile and is now every night and most mornings. Sometimes my whole body will twitch and sometimes it will twitch and then shake, it's not a myoclonic jerk bc it doesn't happen when I'm falling asleep, it happens when I'm just laying there. I've had an eeg and a 72 hr one as well, there was no seizure activity. I haven't had a day where I did not have at least a headache in 2 yrs now. Well I've had a migraine since Monday, Tuesday was the worst pain I've ever been in and Wednesday I literally couldn't wake up (this has happened before but not in awhile) only this time I would try to wake up, my whole body would shake and I would pass back out. This happened about 3 or 4 times. When I was finally able to wake up my arms were extremely tingly and my head was fuzzy and weird feeling, which is what happens when I couldn't wake up in the past, minus the shaking beforehand. Does anyone have any idea what could be going on with me? My neuro left the office and i had to use a "sub" one and last time I was there I told him I thought I had an absence seizure the night before bc I was sitting on the couch and couldn't move and couldn't stop staring but he told me since I was aware it couldn't be a seizure but he wasn't sure what it was, and didn't try to figure it out at all.

[jenniferlynn1383]

Omg! I thought I was nuts! I will lay down start shaking muscles contracting pain shooting right through me I'll even hit myself and not a thing I can do to stop it. I can have up to 30 of these a night. I can feel them building up then it's like... Zap!! I'm like bacon on a griddle! Lol I'm sooo exhausted and sore the following morning.

[Iveforgot]

Hi I also suffer drop attacks memory loss pain etc. Chairi causes fatigue for me too so I sleep lots because I have to. It limits the amount of drop attacks for me. Hope this helps a bit best wishes Lynne

[selmaS]

  Hi Amber and welcome to the Chiari forum.

I want to clarify I understand your condition.....you have acquired Chiari? That is you have low lying tonsils due to an accident?

Or do you have Chiari malformation and an accident triggered your symptoms?

  Regardless of which one, when you have herniated cerebral tonsils, they can compress the brain stem and many nerves and that results in so many different symptoms/issues.

These symptoms can range from autonomic issues to just about anything due to which nerves are affected.

For the "seizure" like symptoms where  you are aware but can not respond.. I had that happen several times years b4 I got my Chiari DX and did not have that for many years...but I do know how and what you mean....the more recent was Drop attacks and that is when you are falling and are aware but it appears to those around you that you passed out....but you know you are falling but can not reach out or yell out to stop or for help....

Have you had a CINE MRI?
A full spine MRI?