thanks for that post.
No i havent got a neurologist at all… I have had two neurologists at the main city hospital when i was taken one time via ambulance too due to the CFS tremors and abnormal body reflexes ect, looked at me and did all kinds of tests, but that was the only time Ive ever had neurologists look at me.
On that occassion (late last year) neurologists gave me a MRI…and couldnt find anything wrong. Ive also had ECG on my head… other than wrong brain wave state happening when I shut my eyes (my brain dont slow as it should)…nothing else unusual was noted.
No Im on no medications for any of the neurological problems, no doctor or CFS specialist has suggested them to me and the hospital just sent me home the next day after tremors went on that other occassion.
“You could also have what they call narcolepsy”
My CFS specialist as he was worried it could of been my heart (im still thinking its BP problems with it going all over the place) and sent me for heart tests due to the collapse. I have my last heart test on 7th June (exercise stress test)…so far all the heart tests (they did a heap) are normal.
In a few weeks… Im going to be put throu all different BP tests…so finally the POTS i assume will be seen.
"wear a special bracelet stating
your problem so some one can helpyou "
nods… im serioiusly considering getting one of those at the moment. I think i need one, not just cause of the collapse but also cause of when i go into severe overload and cant function or remember anything…so aint capable at such times of looking after myself.
“It may sound silly but you dont want to
end up in the er having to have stitches in your head or hurting your
face,etc”
ohh you’ve hit on my fear. I do already have a fear of that. When I had glandular fever I had several collapses and in one of them I slammed my head and face against a cupboard corner as I went down and ended up with a big egg on my head with it bleeding.
So now when im dizzy…im fearful that im going to slam my head or face onto something.
“I just read your message and I cannot imagine the fear of that.I hope you
have a very good neurologist, It sounds like you may be having siezure
activity happening there . are you on medication for this ? I am very
concerned you may nothave the right neurologist,please get one soon or call
your present one. You could also have what they call narcolepsy. which
basically means you just fall into a deep sleep no matter where you are.
they have meds for that.Please let me know.I hope you have some good news
nexttime take special care of yourself. See if you notice something
happening right before you pass out like you said you feel nauseareight
before then sit down wherever you are and wear a special bracelet stating
your problem so some one can helpyou or get get one of those emergancy
things you can wear and use it when you feel funny so 911 can come and have
a pillow near you when your at home It may sound silly but you dont want to
end up in the er having to have stitches in your head or hurting your
face,etc. take care connie I’ll be be watching for your email.
”
…so have had a bad cough all week).