Hello,
So as the above says I am 29 years of age and I have been diagnosed with IIH. What started it all was a visit to the opticians in Feb of this year who spotted that my optic discs were swollen. That was it. I was also getting the pulsatile tinnitus, but I was never told that that was a symptom so I didn’t report it or think anything of it. From there it took 4 months to diagnose IIH, or just Intercranial Hypertension. After multiple eye checkups, the dilation, the cameras and all that jazz, to an MRI, a CT Scan and various blood tests throughout, I finally got a lumbar puncture. The opening pressure was 27.8 so 28 which apparently is high, but not as high as others I’ve read in here, and I was put on a course of Diamox. Again, from reading in here and not from the Neurologist, I have seen that there doesn’t really seem to be a cure, it may disappear or it may not.
Anyway, I have just started the Diamox, I’m on 250mg a day so 125 in the morning and 125 at night, this will increase to 125 in the morning and 250 at night and eventually go up to 250 in the morning and 250 at night. The way the doctor phrased everything and told me what little information he told me I thought that this would be a short-term thing. Take it for 6 months or so, the classic "lose weight" and then everything would be fine. Now that I have read up on it all myself I can see that that may not be the case.
I have an appointment in August, probably a follow up to the lumbar puncture and to see what the meds are doing, so I am just wondering what kind of questions I should ask him. It appears he was very lacking in information of any type so I want to go in, armed with questions, and have my wife there listening in as well so she can understand it as well.
Thank you in advance. Also i really hate Diamox, i'm only on it a few days but the fatigue and the shenanigans surrounding carbonated beverages are frustrating me. Though not really them specifically, just the fact that my Dr said that the notable side effects are "tingling, like pins and needles, in the hands and arms" and that was it. Nothing else. I will be raising this with him when I see him next.