Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
So my dr wants me to go from 500mg/day to 250 mg/day of Diamox, I'm down to 375mg/day but will stay here for a few weeks before going down to 250. I started the other day and I'm doing okay, I've always noticed a few symptoms of IIH until my body adjusts to the lower dose but for the most part I'm doing okay.
However, the big thing I've noticed is the amount of fluid I am retaining. So much so that yesterday I looked like I had a softball sitting around my left ankle. I never had this prior to going on Diamox and I rarely eat salt so I don't think I ate to much salt yesterday. Does anyone know if it takes time for your body's own diuretic properties to kick back in after being on Diamox for so long (2 years)? I don't know if I should be concerned or if I should assume it was because of the decrease in meds that caused it and my body having to adjust to not having that in my system anymore.
Danielle
However, the big thing I've noticed is the amount of fluid I am retaining. So much so that yesterday I looked like I had a softball sitting around my left ankle. I never had this prior to going on Diamox and I rarely eat salt so I don't think I ate to much salt yesterday. Does anyone know if it takes time for your body's own diuretic properties to kick back in after being on Diamox for so long (2 years)? I don't know if I should be concerned or if I should assume it was because of the decrease in meds that caused it and my body having to adjust to not having that in my system anymore.
Danielle
and do you have sleep study results yet?
leg edema is highly associated with IIH, in 77% of us. no one knows why. might be a reason to try Lasix with the lower Diamox dose. 250mg per day isn't much.
Yes, I did get the results of the sleep study. I do in fact have OSA with marked decrease in O2 stats at night below 89%. (And I breathe horribly they say at night, wheezing, shallow breaths, etc). I go back on the 14th to have a second sleep study done while on a bipap/cpap machine. I specifically requested to have the bipap and they said due to the fact I have IIH they will give me it over the cpap, so we will see.
if it were me, I would put off the Diamox wean til after you get on BiPAP. so, if you start to feel bad off Diamox, maybe the PAP will pull you out of it. but what if you have problems tolerating the PAP? how will you know what is causing your symptoms? you know you feel good on the current dose of Diamox, so just change one thing at a time. then if the PAP is helping you, then you may tolerate going off Diamox completely. just my thoughts about it.