Thank you, Dr. Diana!
I managed to get an Rx for Diamox from a neuroopthamologist yesterday. He doesn’t think it will do anything at all, but he said 250mg 2x/day is innocuous so he’d go ahead and write the script. I’m hoping it will help. I have something serious going on that is acting like ALS. MS has been ruled out. But I’ve had the characteristic headache you describe for 5.5 years, and in 2014 I developed venous pooling in my limbs making them purple and painful unless I’m moving around. This year I developed fasciculations all over, followed by progressive weakness (most predominantly in the left leg where my worst venous pooling is) so that I shake when I try to use my hands, I type poorly, have a hard time using my phone, can no longer play the piano, drive, or walk normally. My tongue is progressively weaker so that I choke and have a hard time making certain speech sounds, my speech gets muddy. At night I have to sleep at a 45 degree incline or else I wake up with my body vibrating, or useless weak limbs so that I fall when I try to get up, or a feeling of suffocation. I have a 1.8cm cyst on my pineal gland that I am suspecting may be blocking the great cerebral vein (vein of Galen) and causing issues, so I am scheduling surgery to have it removed. But I’m scared out of my mind because I have no idea if the $30,000 surgery will resolve anything – I’ve been told conflicting things by neurologists and neurosurgeons. We’re also looking into CCSVI at a facility in LA. But in the meantime I’ll just try the Diamox, etc. and see if it makes any changes. Thank you for your help!