Wow thanks, sorry it is so late I didn’t know anyone had replied to this.
The symptoms you had are more or less identical to mine! The symptom I want to get rid of most is the constant near syncope and inability to stand without passing out. I just want some blood flow and oxygen to my brain!
I have only ever taken a few sporadic doses of Diamox because I got side effects of numbness and tingling in my face and hands, and was scared about the diuretic effect.
I have just now come around to trying it again (250mg) because I have been on a low dose of Florinef with worse head pressure, and a recent upright MRI showed mild hindbrain herniation (cerebellar tonsils in foramen magnum) probably not enough to qualify as Chiari.
I haven’t had any benefit from the Florinef so am going to taper off and stop it, in case it is raising my ICP and causing the tonsillar descent, but stay on the Licorice root which did really help me initially.
Can I ask what dose of Diamox you or anyone else take, just as a point of reference?
B xx