I’m. To sure if its to late to reply to this but I get the most awful jaw tremours when I’ve stood or go to the loo anything can set it off it vibrates my whole head and sometimes it creeps down my whole body. After the full body ones I’m exhausted for hours but as soon as I stand or do anything it will start again. Also I have found I have to sleep sitting up but this really hurts my back and unfortunately my joints still need replacing in the morning. Or also the tremours are so bad sometimes they actually leave me with us lunatics and dislocations. Has anyone else has this? I also have the feeling of overwhelming emotions at this times. I watched your hyperadergenic pots video and I can definatly see that these are what it might be. But I also go the other way fainting cold and hot sweats fatigue and bowel and bladder issues.
The only thing I’ve found that helps is the sleeping upright x
Hi Carrie, We are all complicated patients, and it is really impossible (and unwise) to just throw out a guess with no *real* info about you, of course. Having said that, many of us develop a form of hydrocephalus, and cannot “drain” CSF well, especially lying down. This forces us to try to sleep sitting up. I do wonder if that is occurring with you, among other things. Are you able to come to Texas, perhaps, to be evaluated? Hang in, Hon…