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Tuesday, January 17, 2012

More medication hatred

Ok I am officially done playing the little game with doctors of "just try this one and see if it helps".  In response to my email the neuro wanted me to try Diamox.  Now I always wondered if I might have pseudotumor cerebri, which is what the Diamox treats.  But when I asked several doctors they said by now I would probably have been about blind from the pressure over that much time, but nobody has ever done a lumbar puncture, not that I want one though.  Oh well I said I would try anything.  The first day I took it I vomited all day long.  This was also at the time my grandfather passed away.  I was at the funeral home with the family making funeral arrangements and had to keep going back and forth to the restroom and vomiting.  That was just great.  Then I called my GI doctor to ask for nausea meds.  So at least the nausea meds helped with the nausea and vomiting.  Now I get more lovely side effects - tingling like when your hand or foot falls asleep (like with Topamax), drowsiness all day long (nodding off constantly at my desk), fluid loss from urinating constantly so that I need to take potassium, and carbonated drinks taste terrible.  Well the last one I know isn't so bad and might actually help as far as the weight loss attempts, but I am just listing them all. He wants me to try this delightful medication for two weeks.  If it does not magically cure the hemicrania continua he says he will refer me to either Mayo Clinic or Cleveland Clinic for occipital nerve stimulator implant surgery.  I am leaning more towards Cleveland Clinic.  It is at least a little closer to me (still a 12-hour drive though).  I have to drive, no way we can afford to fly out with our whole family, hotel, rental car, etc.  So hopefully soon I will have that referral.  Please everyone cross your fingers for me! 


Nutmeg04 said...

I was diagnosed with Pseudotumor Cerbri (Intracranial Hypertension) in '07, 3 years before I was diagnosed with Hemicrania Continua. I have often wondered if the IH caused the HC. Unfortunately for me my IH got real bad real fast (causing blindness within 2 months of symptom onset, and it took them 2.5 months to diagnose me). So I ended up with a VP Shunt instead of taking the Diamox. Did you ever get a spinal tap? That is the only way I know to diagnose IH. They really aren't that bad, mostly because if you do have IH your headache will disappear for a few days since the pressure was relieved by the tap. On the flip side, it can make you dizzy and if they over tap you (take too much fluid) it can cause headaches.
If your insurance company pays for the stimulator, get it. I love it and don't regret the surgery one bit.

Tara said...

No I never have had a spinal tap. No doctor has ever said anything about doing one, ever. What started the whole thing was years ago my eye doctor thought that my optic nerve or disc - which one is it? - looked swollen but the neuro said it wasn't. Insurance won't pay for the stimulator but I have a new neuro now that says he can help get it approved or else I can hope to get it through a clinical trial, which I am on a waiting list for. The problem is I am afraid maybe I won't meet the criteria or maybe get the sham procedure done. It's just more waiting and waiting and waiting.... I'm glad you are still doing so much better with the stim. Hope it continues to be great for you!