Hello everyone, its been a while since I have posted here. I had surgery back at the end of may so I’m almost 3 months into recovery. So far I’m not noticing any changes in my condition other than I have been having random full body spasms. I’m epileptic but these are way more than my usual seizures. I wanted to talk to you here about what it could be. I want to have some information to bring with new to the doctors. I have also been having recurring hiccups everyday. I have done some research, and have come across a condition called myoclonus, more specifically segmental spinal myoclonus, but I can find very little concerning SSM and syringomyelia. It was just one article that came up repeatedly. Has anyone else had this problem with full body spasms after surgery? Hopefully someone can help. Thanks again everyone.
Yes thank you for asking. I get them frequently of at least 3-6 times a month. The doc wanted me to be tested for epilepsy b ut they did not find any abnormalities on the EEG. They then diagnosed with Non-epileptic seizures. From my research they are not related to Non-epileptic seizures. My wife and I are continuing our research but as of now have found nothing as of yet.
If this thread get lost I would still like to keep in communication in case either of us find something.
That sounds like a great idea Mike. Hopefully one of us can find out some information. I wish I could name something that triggers it, but as I said its pretty random. Earlier it happened when I was standing, but its also happened when sitting and lying down, or even just scratching, and it varies in intensity for me. Sometimes it’s just an arm, neck, and head thing, but others its a full body shudder that I feel in my spine like I have the chills. Good luck and thanks for posting!
I'm new to Chiari (found out 8-11-14) I'm glad to finally have a name to put with my illness. I have had this same problem (among others) for several years now. I had no idea it wasn't normal until I read your post. I'll start researching as well. Maybe one of us can find some answers.
I grew up as an epileptic…havent been on seizure meds in years…I also have had full body jerks…I Wish i understood…If you find out please.lehhhmmmt me know too…
I've had them since my decompression surgery. I'll get the full body ones, but I also will get just a random leg or arm or whatever. Just a random muscle twitch.
I never thought they could be more than just that....now I may have to look into it.
Thanks for the replies everyone, I feel better knowing I’m not alone in this, and having you guys willing to help find out information. I wasn’t sure if it was normal or not, but my wife has been very concerned and feels it’s more serious than I did. Hopefully we can all find out more information together, thanks again everyone!
I have similar "seizure" like episodes . I saw a neurologist for my Dysautonomia/POTS and he said they are Convulsive Syncope . They occur in some patients with POTS.