Dr. Diana – Thanks for explaining this! I really understand it all more clearly and wish I had when I saw the neuro opthalmologist I was referred to as she corrected me several times on the use of the word hydrocephalus and it being reserved for use only when the ventricles are enlarged. Blah! I just didn’t know enough to defend myself or “The Theory”, but I’m well armed now. As it turns out, she did an ultrasound on my optic nervers and found them to be be enlarged and too much CSF around them and said officially “it’s as if” I have too much CSF around my brain and diagnosed me with possibly pseudotumor cerebri or idiopathic intracranial hypertension. She said my seymptoms would get better if I lost weight according to studies at the Ohio State University. Blah again!
My family doc started me on Diamox because he’s read the Driscoll Theory and helping me get answers and on the right treatments. I have major sulfa allergies, but have recently started Celebrex and the Diamox with no reactions whatsoever. I was terrified of a reaction, but I’ve been on both for about 3 months now and going strong.
I’ve had positive results with the Diamox including reduction of those horrrible headaches. On the day I started it I didn’t think I even had one until the medicine kicked in and I could feel the pain I had gotten used to dealing with just slip away. The motion sickness, sensory overload, poor sleep have all improved. I still have ear pain with drainage (this is especially bad in the mornings) and the occasional, suspicious fluid leaking from my nose so I’m wondering about the dose and am on 500mg daily so not sure that it’s enough. I swear my vision even got crisper on that first dose Is that possible?
Speaking of vision changes, I’ve had a hard time focusing my eyes lately so went to my optometrist for my yearly exam and to be checked for plaquenil retinopathy since being also diagnosed with RA on top of EDSPOTS, yadda, yadda, yadda. I thought I was just going to need bifocals, but instead they tell me I have esophoria and that my eyes must be turning inwards. I’m wondering if this could be due to plain ole EDS or could this have something to do with the cranial nerves being stretched out from the external communicating hydrocephalus? I’m dangerous on the web now that I understand this whole business and read that downward pressure of the brain can cause VIth nerve palsy that can possibly cause esophoria. Anyone else experience this or Dr. Diana, since this falls squarely in your realm of expertise, could you care to offer an opinion? I grilled the eye doc at length and he said it’s due to aging (I’m 41) and he actually has people that have this for no reason so maybe I’m just overthinking things here, but I am terrified that the glasses I just ordered with the new prisms to correct for this condition will have me looking like I’m wearing fish bowls strapped to my face. Ugh! 🙂