For the past two years or so, I’ve been on pretty gargantuan amounts of acetazolamide (generic for Diamox) to treat idiopathic intracranial hypertension. It’s worked pretty well, too– I’ve managed to go this long without a shunt, and haven’t had any serious medical scares or emergency lumbar punctures in a long time.
I’m not going to lie, though. Diamox is a nasty, nasty drug and being on it long-term is no good. For one, long term use at the dosages typically used for IH hasn’t really been studied a whole lot. (Fun fact: Diamox is also used to treat and prevent altitude sickness. When I got my first bottle after an emergency tap and formal diagnosis of IH at UC Davis, the directions said “Take twice daily beginning two weeks before ascent.”) For two, it is pretty hinge on your blood chemistry. I didn’t really know how bad, and figuring out how to live with A) a brain that’s decided it wants a larger apartment and B) drugs that give me freaky acidic xenomorph blood has been a journey. So, if you’re about to begin Diamox for intracranial hypertension, here’re some things you might find useful:
- Biweekly blood tests will probably be a thing for essentially ever (or until you’re taken off Diamox).
- Tingling in your extremities and face will also probably be a thing. This is likely because your blood levels of potassium have gotten a little low, but,
- Tingling can also happen just because. Sometimes I can’t feel my face. This has occurred in the middle of the ER, with doctors looking at my totally normal potassium, magnesium, and sodium levels. I was sent home, baffled, only to discover that tingling lips and noses happen to other people too. While I wouldn’t call it normal by any stretch, it’s at least not unheard of. It can definitely be upsetting the first time it happens, and kind of underlines the importance of regular blood tests and a good diet.
- There might sometimes be joint pain. This will, in my experience, cause doctors to either freak out and want to immediately begin checking you for rheumatoid arthritis or do absolutely nothing.
- A low tyramine diet might help with IH symptoms. Studies seem to have concluded that, while it isn’t going to actually do anything about intracranial hypertension, it might lead to fewer headaches and general misery in some people. However,
- It might not.
- A low PRAL diet might help with some Diamox side-effects. Diamox will cause higher blood levels of chloride (potentially leading to chloride acidosis), low levels of bicarbonate (a very important blood pH buffer), and deplete levels of important electrolytes like sodium and potassium. When people talk about foods that are either “acidifying” or “alkalinizing,” their PRAL numbers are what they mean. These numbers are calculated based on the foods’ mineral and bicarbonate content. While min/maxing PRAL probably isn’t of enormous benefit to normal people, it might help limit some of the Diamox-havoc. But,
- It might not. Some people’s IH requires such high doses of Diamox that there just isn’t a way for a diet to make a difference. Consuming certain low PRAL foods might also encourage the formation of kidney stones, which Diamox already raises the risk of.
- Basically, if you’re at high risk of developing kidney stones, have IH that might be tied to hypervitaminosis A, or have some other factor that has warranted special dietary advice from your doctor, that advice should always trump what the internet tells you to put in your face.
- Diamox will make everything taste horrible anyway, so you may find yourself having difficulty differentiating between actual food and, say, lightly toasted peat moss. This is especially true for carbonated things– even plain mineral water tasted really strange until I got used to it.
- It might also kind of kill your appetite. This can be dangerous because of the whole potassium thing. Plus,
- Even if it doesn’t, it might do weird things to the way your body handles food. This is probably not a terrible thing for some IH sufferers, since the most common piece of initial advice patients get is to lose weight (some people even go into remission after shedding a couple pounds). If, like me, you did not start out overweight, you might want to find a way to buy Ensure in bulk in case you begin looking like The Machinist-era Christian Bale.
- You might want to learn to enjoy coconut water. Even the kind that basically tastes like sweetened dishwater. Stuff’s got about 14% of the RDA for potassium in a serving, and it’s way lower in sugar than orange juice.
- Minor stomach bugs can become a very big deal, very quickly. Bouts of minor intestinal distress I wouldn’t’ve batted an eyelash at two years ago now have the potential to send me to the ER– electrolyte imbalances are no joke, and it can be nigh impossible to keep your levels balanced if your body isn’t cooperating.
- It might make your brain operate a little… differently. To be fair, I was kind of warned about this. Oddly enough, it was by a physician’s assistant in a walk-in urgent care center and not any of the doctors that prescribed Diamox to me. What do I mean by differently? He said it can make your cognitive processes feel “slower.” I haven’t really experienced that, but I did have a lot of forgetfulness when I first started taking it.
So, if you’re starting out on Diamox, I hope this helps. If you have a friend or loved one who is, I hope this at least provides some more understanding about what it’s like to take mountaineering drugs off-label for a brain problem.