Chiari Malformation Community
Diamox?
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Diamox?

Anyone else have to take this for pappiledema?  How long and what was your dosage?  How did it make you feel and what is your experience.  I am curious to see how it compares to me.  
Thanks,
Jen
10 Comments Post a Comment
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979826_tn?1389039958
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
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2178416_tn?1337617593
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...
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979826_tn?1389039958
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
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2178416_tn?1337617593
What metal do you have in your head?  Isn't there a limit on the ct's you can get per year?
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979826_tn?1389039958
i have plates and rods and screws and a stimmulator um i dnt no but i get cts like ever 3 or 4 weeks
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2178416_tn?1337617593
Oh wow!  Have you had decompression surgery?  Do you have your story on here somewhere?
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979826_tn?1389039958
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
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2178416_tn?1337617593
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?
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979826_tn?1389039958
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
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2178416_tn?1337617593
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.
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