Chiari Online Support Group

Odd seizure not sure what it was

Last night I had what I think is a seizure. I was getting ready for work and sitting on my bed putting makeup on then all of a sudden I start feeling twitches in my face, hands, neck and head. Then out of no where my head jerks right onto my shoulder and my face starts twitching, this lasted a good minute or so with lots of smaller twitches after it was over. My face was numb for a good 20 mins after I couldn’t feel my face to continue to put my makeup on. Because of the twitching I felt that dreadful burning sensation in the back of my neck and head. I’d like to know if anyone else has experience and if anyone thinks I’ve had a seizure.

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Hey Creamy,
Welcome to Ben’s Friends.
I would be recommending you make an Dr’s appointment and get it checked out. Yes, it could be a seizure but it could also be a warning of something that needs further medical follow up, either way, you need to follow it up as a matter of urgency. Some seizure conditions can be managed with medication but this all needs to be managed and investigated by your Dr.

Please do let us know how you get on.

Merl from the Moderator Support Team

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Dear Creamy, That sounds so familiar! Nine years before my decompression surgery, I started to get those kinds of twitches. The twitches showed up all over my body and occurred about every 10 seconds. At the time, I was teaching a kindergarten class, and the administration told me that I had better get those twitches ‘fixed,’ because I was freaking out the kids. I mean, I was the one freaking out! The twitches were like muscle snaps - very fast and vigorous. All my life, I’ve had what is called ‘benign fasciculations,’ which is like the irritating eyelid twitches - but they’ve always been all over my body and could go for months at a time. But, these new twitches were like short seizures. Now I know that both have been caused by the Chiaris! When I had the decompression surgery, the ‘short seizure’ twitches stopped immediately. I will get them maybe one every few days now - mostly like restless leg syndrome. The benign facsiculations are triggered by caffeine, sugar, and meds.

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Thank you for your response ModSupport🥰 I have an appointment for a MRI next week. I feel better after talking with my doctor she assured me they are going to find out what’s going on and help. Sucks to be in pain and worrying.

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Yes! I have also had the twitches, in my eyes, mouth and extremities. It has only gotten worse as I get older as well. I’m happy your symptoms are better manageable now. I hope I get to that point as well. I wish you so much peace and happiness and thank you for responding🥰

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Did your decompression surgery, include a zipper in your head? My pcp said my eye/face twitches are caused from stress. Last week I recorded my eye twitching in the corner by my nose for over a minute, it’s very annoying, on top of the rest of it. Thank you

Hey, Jenny! To answer your first question - the surgical site in the back of my head was held together with super glue (or perhaps a medical equivalent of super glue) - which my neurosurgeon told me I could pick off after waiting 10 days or so. I never had to go back to get ‘stitches out.’ Now, I only have a very minimal scar that you really have to dig through my hair to see. As far as the twitches - I have had a variety of those things since… forever. Starting in high school, I noticed I would get twitches all over my body. Those kind of twitches they call fasciculations, and it’s the type of twitches most people get in their eyelids. Prior to Chiari decompression, my fasciculations easily lasted 6-12 months in any given spot. Post surgery, I hardly get them at all, and only if I drink too much caffeine, eat too much sugary foods, or take over 3mg of amitriptyline. A more frightening symptom of Chiairis were muscle spasms that started about 8 years before my surgery. I was overseas teaching an internation kindergarten class, and suddenly I started getting very abrupt muscle jerks every 10-20 seconds. Scared the kids. Scared me to pieces! It was like any major muscle group would just snap like a whip - throwing my arms, legs, facial features - into sudden jerks for a split second. I went to Doctors in Central America that prescribed a host of anti-seizure meds. They did nothing at all. Fortunately, once I had the decompression surgery, those are all gone. Every now and then, I might get them when falling asleep - like restless leg syndrome - just for a day or two. I must say that for me - the decompression surgery saved my life!

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Thank you, for the information, I have the leg restlessness, and is really annoying. The twitching in my corner of my eyes are the worst. I’m happy that your decompression helped you. Have a blessed week. :pray::purple_heart: Next month is Chiari Awareness Month :purple_heart: