Hi, I am idiopathic pn for 2.5 years. One of my symptoms that is getting worse is what I call brain shudders or brain tremors. They come on when I am trying to sleep or rest. It is inside my brain - feels like I am tremoring inside my head. This is often followed by a major twitch - often my head will suddenly fling to one side, or both my shoulders will quickly shrug up toward my head, or all 10 toes will bend. this is usually bilateral meaning whatever happens on one side of the body happens on the other as well at the same time. these "twitches" or whatever they are, are intense and sudden. They come in waves, meaning a number of them occur right after each other, and last for a period of times - days, weeks - and then stop again.
I have discussed with two neurologists. One said she thought they were benign, the other said it might be indicative of metabolic involvement.
I have had every test known to man (spinal tap, MRI, muscle biopsy, nerve biopsy, lip biopsy, etc etc) and no diagnosis (except PN - demyelinating polyneuropathy with inflammation and some axonal involvement...)

Does anyone else have a symptom like this? If so, has it ever been explained? Thanks. My nights are very restless and I am left very tired when I am going through this (which doesn't make working full time and having 2 little kids any easier!!!!)

Have you ever been tested for seizures?
It sounds like the "clonic" part of a seizure, or the part where a person "involuntarily twitches".

Not all seizures involve loss of consciousness.

Hi Fran. I have had that sensation. I call it my brain earthquake. Not very nice sensation is it. At one point I was having more then 50 episodes a day. I did have an EEG and it was normal. I have had pretty bad facial twitching with it at the beginning. My face would spasm into a look of surprise.

Mine started almost 2.5 years ago. I'm happy to report I rarely get them now. Funny, those started at the same time as my undiagnosed vertigo, which appears to be fading away too!

I never found out what it really was but someone else I know experienced it as well. She was told it was a migraine variant.

I'm not sure but for me it makes sense sort of. I have a long history of migraines and during the time that my brain quakes were severe I was not having migraines. Now the migraine pain is back and the quakes are disappearing.

Hope you get some answers soon!

Oh and I wanted to add I have a demylinating polyneuropathy as well. Currently they think it may be CMT.

I like brain earthquake! That describes it quite well.

Morning Fran,

I may have to take back part of my prior statement. LOL

I'm on day 4 of a migraine. Woke up on my right side which is the side where the symptoms started, the side that is mosted effected and weirdly enough the side with the migraine.

Before I opened my eyes, and I might add, I didn't move (there goes the BPPV guess lol) I had an episode with a 1/2 spin of vertigo and a brain quake all at the same time.

So the migraine pain, vertigo and brain quake all at the same time. Nasty!

Hope you are quake free today!