I got ADEM (autoimmune, no illness) in March of this year and was in the hospital 8 days. I had had migraines, nausea/vomiting, Insane scalp itching, lack of coordination and fatigue leading up to admission. The day before discharge I had two attacks of severe muscle clenching in my hands and feet. After getting home the attacks worsened both in quantity and quality. Now my whole body clenches up, I breathe very shallowly, my heads slumps to the side; the worst part is enormous pressure builds up in my head.
I wonder if others have this happen. An episode only takes about 5 minutes from beginning to final relaxation -- then I am out of breath for a few minutes and my legs are weak for awhile thereafter. Today I kept track and it happened 19 times. I try to figure out triggers--yesterday I actually managed to do some light yard work so maybe exercise brings these on (after yard work the attacks were also very very bad). Changing posture/altitude -- getting out of bed, walking upstairs, getting up from a chair or bath seems to trigger them definitely. But I can be reading in bed for half an hour and have two episodes.
My neurologist has prescribed neurontin and tizanidine and may admit me again next week for control of these. When it is really bad I want to go to the ER as I am afraid I'll stroke out.
The base of my brain stem is where the demyelinization occurred. There's a question of one other place at the front of my brain but may be artifact on the MRI.
Any insights or experiences of others would be interesting to me.
Great site -- It is reassuring to hear what people say about their course and how their progress is going.