Hiya I don't quite know how to describe this, but just wondered if anyone has their head shake involuntary? It can move side to side or just jerk about.
YES!! You are I think the first person Ive heard mention that just like I was getting it at one point. My head was shaking very hard and fast side like as being turned side to side but faster then I can do this myself at will The worst incident I had of this is when on a rare occassion I was taken out and was in the backseat and the wind from the front windows hit me in the face and it set off this reaction for about a whole minute, I thought I was going to end up with some kind of side on whiplash out of this as there was a lot force behind this (they had to wind the windows up and stop the wind blowing on my face trigger before I went ok again)
I had that during a point in which I went throu a few week period of neurological systems golore. including I was getting myclonus, huge jerks (one actually threw me from a sitting position onto my face) and tremors like parkinsons disease at the time (I tremored constantly for 3 weeks straight non step during a bad crash). A doctor who saw me had me ambulanced to hospital as he couldnt believe ME/CFS would cause someone to have such major neurolgical reactions. At the time my Rombergs Test was so bad that the neurologist said he'd never seen anyone go down like I did (I went down instantly when I shut my eyes). Incredibly I got kicked out of hospital the next day (collapsed on the floor of the waiting room while waiting to be picked up) due to them saying that they do not treat "chronic health conditions" in hospital and that was something for my doctor to do (that was after I'd said to the neurologist who was confused about my whole state that i thought it was my ME).
Due to being on a slow downhill run currently due to being forced to regularly over do it (state disability service is being discriminatory and want provide the support Im needing). Im back to getting incidences of jerking and spasms, I had like a seizure only the other day after I overdid it just from cooking the easiest meal I could of cooked and being taken to visit someone for an hour in the same day (I was actually wasnt even sitting there and spent the time laying on their lounge but still badly crashed and ended up collapsed (after the jerking/spasming incident, on their floor).
I do believe I do have ME (due to having so many of the testable ME abnormalities) ..but I also wonder if I have lyme thou it didnt come up on the test, I recently found out that I have a rare gene mutation which makes me more susceptable to it .. (and I probably have a mast cell disorder too).