i dnt remember what my dosage was and mine wasnt for pappiledema it was just to try and lower my pressure but oh i hated it! it made everything taste gross!!!!!!!! and it made my stomach hurt i didnt like it one bit and it didnt help my pressures. i hope it helps u and doesnt cause u much problems!
molly
I was on it before decompression, to control my pressure, but ihave been on it for 4 months, since surgery, for papilledema. I am finally tapering! The metal taste is terrible. Did you get the pond and needles in your feet? My hands are very sensitive to stimulation ( like running water) and any kind of temperature change.
My pressures are stable, as far as I know. I have headaches nearly everyday, but nothing like the headache that comes from chronic hydrocephalus and a complicated chiari malformation. Next MRI is in Sept...
i have pins in needles all the time so i dnt no if diamox caused more or not but ya its awful im glad ur getting to taper! i cant have mris any more cause of my metal in my head but i have cts all the time but ya hydrocephalous ha is awful and sooo different from the chiari ha which is awful also just very different goodluck to u with the diamox!
molly
What metal do you have in your head? Isn't there a limit on the ct's you can get per year?
i have plates and rods and screws and a stimmulator um i dnt no but i get cts like ever 3 or 4 weeks
Oh wow! Have you had decompression surgery? Do you have your story on here somewhere?
i dnt no if my story is on here or not but probably pieces of it r here and there but ya ive had four decompressions and two fusions and lots amd lots of shunts
Oh my gosh! How old are you? I am so sorry..... :(.
I am fairly sure things went well with my decompression. I still have pain in my head ( I don't really call it a headache anymore....just that my head hurts)
I have the neck pain and other smaller symptoms that sometimes worry me that the tonsils are pressing down again. I told myself not to be too paranoid. That if the pain gets so bad that I throw up, then I will go to the ER.
Where are you withtreatmentnow? How are you doing?
im 19 . im at hopkins every few weeks getting my shunt adjusted and working with drs it ***** but its the life we have right? well i hope things start to get better for u!
molly
You are definitely in my prayers. I hope you are able to find some relief. Your at a great hospital though. I was in Bethesda for my surgeries.