Acetazolamide

I realized today that I haven't really addressed what the treatment for IIH is. I should probably do that.

Due to the lack of research there isn't a drug that has been developed solely for IIH. So we take drugs that have been developed for other conditions and use them off label. The drug that seems to work the best is acetazolamide. The name brand, Diamox, has been discontinued and now only generics are available.

I was going to try and explain to you how acetazolamide works, but I do not understand any of the sciency words so what I will tell you about are the side effects. They stink.

• numbness and tingling in the fingers and toes
• taste alteration (mostly carbonated drinks - the bastards)
• kidney stones (which I also get chronically - awesome))
• fatigue
• more frequent urination
• dehydration
• headaches
• blurry vision

So yeah. Not awesome and I have experienced nearly all of those. I think the worst (besides the soda, but that goes without saying) is the numbness. I have a spot on my left heel that goes numb in a straight line. It is terrible. Sometimes it actually wakes me up out of a dead sleep.

Acetazolamide is used to treat a bunch of things, but I am pretty sure it was originally developed as a glaucoma drug. Thus far it has proven to be the most effective in lowering intracranial pressure. It has been shown to lower it anywhere from 5-57%. That may sound like a lot, but my OP (opening pressure) was around 60 so even if I am lowered 50% that doesn't get me to normal (under 18).

Acetazolamide contains sulfa, which I am technically allergic to. So when I first started taking it I had to be vigilant and watch for any rashes or anything. The hospital neuro said that as long as my reaction to sulfa drugs wasn't super severe then I would probably be fine and so far so good. Although yesterday I wore a tank top that had just been washed and it made me itchy. I was convinced that I was having an allergic reaction to acetazolamide, which my logical brain and AH told me wasn't likely as I have been taking it for a month but you can't always listen to the logical brain. Taking off the tank top and putting on some lotion seemed to take care of it though so I was ok.

You also can't take acetazolamide when pregnant or nursing, although IHRF is doing some studies right now to learn more about this. I know we are incredibly far from that at the moment (if ever - I am thinking adoption would be better for people with our genes) but it is something to think about. What do you do when you're preggos?

This has gotten extra long. I will tell you more about alternative treatments and surgical options at a later date.

On my personal front I had a pretty great day. Head feels pretty good and I rode my bike for half an hour today! My plan is to increase by five minutes each week and today I was gonna up it to 25 minutes but I felt so incredibly great that I just kept going. I did get pretty sweaty though.