Thank you so much for your response! As far as the hydrocephalus goes, I tried the neck brace. I felt 75% better as soon as I put it on.
MJ
MJ, I was the same way. I even tried sleeping in a hard collar!, neck traction, the works! I could not turn my head, go over a tiny bump in the road or look down without becoming VERY symptomatic. Now, we are all different, but if there is any chance that you have external communicating hydrocephalus pushing your hindbrain down a bit (like chiari, but not), diamox may take off enough pressure to lift it up again. Of course, please check with your doctors and see what their thoughts are, but if you try it for even one night, you’ll know if it is what you need. In two months, I didn’t even need a collar any more — this after I felt that I could no longer hold up my own head! It bothered me every minute of every day prior to diamox. Talk to your docs and let us know?
Hang in, OK?