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...

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Sun exposure with acetazolamide

PastryChef
PastryChef

Hello all,


I'm happy to have found this group. I lucked into it googling about sun exposure and taking the acetazolamide. It's so nice to have people that have the same condition and know what you're going through.



It's just turned pretty hot here and I work at a job that doesn't use the air conditioning very much. I'm lightly exposed to the sun durning work, but I have always burned very easily. So I'm a little worried, I've read that being on this medication causes you to burn even easier and your body doesn't regulate it's temperature as well. 



Anyone have any advice or have run into some of those side effects? I've only been on the meds for about 7 months so I haven't experienced a summer with them yet. Thanks in a advance for any advice! 

Kdavis1010
Kdavis1010
I have been on Diamox for a couple of months and all I can say is that my son plays every other weekend in baseball tournaments and in the heat on that medicine I cannot eat. All I can do is drink water. My hands constantly peel and the sun makes me feel sick and worn out. My neck kills me so bad after being in the sun. It makes all my symptoms flare up really bad.
PastryChef
PastryChef
Ok, thank you KDavis. Yea I've found that when I've been on it I'm not very hungry at all. I just played a round of golf and didn't wear sunscreen and I'm looking pretty burnt, and I'm pretty tired. But I'm not sure if it's any worse than usual.

Have you tried bringing an umbrella to the games to shield you from the sun a bit? That sun at the fields has to be blaring hot on you :(
Sophiasmom06
Sophiasmom06
acetazolamide is a sulfa based medication. being in the sun while on it can trigger a sun sensitivity rash, which is red spots and very different from a sunburn. but just having IIH makes us more sensitive to the heat. it can increase ICP, just as sun shining on a potato chip bag can make it blow up like a balloon. my son and I have IIH and we went to the fair last week. it was only 85 but it was very hot and sweaty in the sun. after 5 hours we were completely exhausted, very weak. he's on Diamox, I'm not. it doesn't make him more likely to burn. I think if you wear sunscreen and try to stay in the shade, that's the best you can do for the sun sensitivity rash risk, but what's more important is avoiding intense and prolonged heat exposure when you have IIH, to prevent ICP spiking.
PastryChef
PastryChef
Thanks for all the information Sophiasmom!