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Brain & Nervous System Disorders Message Board

Brain & Nervous System Disorders Board Index

Hi all. I've just been in Hospital recently for 7+ weeks, due to a severe worsening of my condition. Ive had CFS/ME & Fibromyalgia for 11 years. however no matter how bad things have been (and they have been), never as bad as a break down in the health in November last year.

I suddenly got severe tingling inside my brain one night (although I'd had this to a much smaller degree in the past year on & off, which started with a severe flu), and all of a sudden my musces just wouldnt work properly. I felt paralysed to a degree (severe weakness trying to do things), and almost like my brain was going to have some type of seizure. It made me cry and feel suddenly extremely depressed (last time I felt that sudden depression was a bad prescription drug reaction).

Anyway I was in hospital a few days later, with bad orthostatic intolerance (POTS), and they put me in, but couldnt find anything too significant. Mind you they didn't do any brain scans, even though some of my worst symptoms were severe brain tingling & systemic nerve & muscle pain/weakness.

My immune system is incredibly low, and its like I just have a permanent virus now - constant sore throat, glands, upper respiratory etc. My brain feels like it has a constant pressure & feeling of water rushing around in it or something. Very strange & uncomfortable. Its kind of like a virus is swimming around in my head.

My chemical sensitivities got 100x worse at the same time as the neurological episode, and muscles just don't work properly half the time. Its very scary. I was already house bound before and now I can barely do anything.

One of the worst things is the brain - memory has become terrible, general cognitive function extremely low. I can't think of anything I need to do or should do. Conversations are hard, I forget things I'm saying, normal words even.

Strangely, FOOD makes it much worse, and not eating much better. Protein food is the worst, it flares up the brain tingling & muslce symptoms severely.

Because they didnt find much (standard blood tests and some xrays and ultrasounds, not even of the head), they just sent me to a rehab hospital for physio.. which did nothing at all, just made me worse some days. I got a bit better after going home due to the non-stimulating environment of hospitals (bright, loud, rude staff, etc), and a huge bunch of health supplements I'm on to try to heal my gut (quite damaged from cortisone). Always feel sick, nauseous, gut pains, & have lost heaps of weight. Don't look too good.

However I still have no answers from medical professionals, and was just sent home with no help to 'deal'. I've delt with my CFS no problems for over 10 years, by myself, with patience, and barely a skeric of depression, much to peoples amazement. However now I'm having a great deal of trouble holding it together so to speak, as I've never felt so out of control of my own body.

I'm on no brain drugs except valium, which ive been on for years. I don't know what type of drug would help the nerve pain & brain tingling. I cant tolerate most antidep's - amitryptiline due to heart disturbances, and ssri/snri just make me terribly sick even at like 1/16th of a tablet or less (shakes, nausea, etc). Not sure what else to try, but desparate to somehow find something to help me.


I know this post is old. but wondering what happened to you. I am in a similar boat to you with no diagnosis. Have you considered Lyme disease? Or systemic candida? I hope to hear from you. My symptoms started with a virus that never left. After the initial sickness then it went into a CFS type of thing. A few years later i started getting neuro symptoms. Head tingling on top of head, head pressure, eye twitching, balance issues, neck pain, jaw pain, sometimes ear pain, etc. Also lots of stomach issues. There are many more but this is the long and the short of it. Hope to hear form you soon. LaLa

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