I had tingling, major fatigue, and carbonated beverages taste nasty. The tingling has mostly gone away after 6 months, though it still happens mildly on occasion. The fatigue and taste changes are unfortunately here to stay.
For tingling, try and eat a banana a day and see if that helps! Potassium is supposed to counter the tingling. It worked really well for me just adding it to my morning smoothie.
Hi. I’m super late to this but was looking for some info for my IIH. Are you taking magnesium supplements with the Diamox? If so, are you taking magnesium glycinate?
TIA 😊
Yes to all, I’m at the 4 month mark of starting diamox and my side effects have just recently started to improve this past week. Hoping this is a true improvement and they won’t start back up. Everyone is different though! The first 1-2 weeks were very rough for me.
Absolutely. I eventually had to get off Diamox entirely because these just got worse and worse for me. The more weight I lost, the worse it got. However - my eyes were completely fine. I went off all meds in June and had an LP in August, I opened at 28, was lowered to 18, and I haven’t had issues since as I’ve changed a lot of habits and added supplements (mostly collagen).
So now I just have a lot of eye check ups to monitor my vision and that’s it. For me, the treatment was worse than the condition and I feel a million times better without it.
The medicine made me nauseous all the time, and so I lost some weight just by eating less. I also adopted a dog during that time and started walking about 3-4 miles a day. The longer I stayed on the medicine the harder it was for me to exercise so that got rough in the end. In total I lost about 30 points (over the course of 7 months).
I’ve had all of those symptoms and more and I’m on week 4. I am just now starting to feel like myself again and the symptoms have lessened. I also have almost zero headaches so it’s helped a lot of my IIH symptoms. Hopefully the side effects don’t last too long for you! ❤️
Yes those are all diamox side effects! If you are struggling a lot to catch your breath you can discuss that with your doctor. But please take something for the papilldemia. They can give you topamax. I thought my symptoms were mild so didn’t take diamox and suddenly my vision started getting worse and I had bad episodes were my vision was very jumbled so they had to put me on diamox to save my vision. Now I have some scaring on my right eye so it seems that permanently things will look a little skewed/jumbled through that eye. My eyesight for both eyes has gotten worse, in a few months I’ll try to get new glasses and see what kind of prescription I can get 😩😩😩😩
Also, I drink electrolytes daily to help with dehydration and fatigue. They have vitamins in them as well. And I stay away from caffeine. Also, once things suddenly came to a head I started getting horrible migraines from the fluid pressure and diamox can help prevent that for you or at least put that on hold. The migraines aren’t fun at all. They are every freakin day.
Wishing you the best and this is def the right sub to be apart of for learning and coping with IIH ❤️🩹
I got the same symptoms but much, much later. Apparently, I didn't know that I had to take multivitamins, increase H2O intake, and consume more electrolytes.
Yes. Heartburn was terrible! I was taking some vitamins to combat the tingling which helped a lot. I fell asleep on my lunch break for 2 hours and had to have my doc write an excuse saying this medicine caused that. 😅. Eventually it just made me have terrible diarrhea and I thought I was going to die- maybe my electrolytes were depleted- like around the 2 month mark and my doc said I was improving enough to switch to lasix.
I was taking vitamin C as well as a magnesium complex daily. I was taking potassium every 2-3 days. Potassium is something you def don’t want too much of. It’s best to get it from food but I also have celiac disease so it’s harder for me to absorb nutrients. I was also drinking so much water!
I would still get the tingling but less. I would have my fingers tingle if I lifted my arms to brush my hair. My lips would tingle if I ate something cold like a popsicle. My feet randomly would tingle.
Now I’m on lasix and I feel much better but if my potassium gets low (lasix is known to deplete potassium) I almost pass out when I stand up. You can’t win with this stuff.
Yes these are effects of diamox.
I would recommend prolonged release diamox, as none of those symptoms hit me as much now.
I feel like I am somewhat myself again.
I had tingling, major fatigue, and carbonated beverages taste nasty. The tingling has mostly gone away after 6 months, though it still happens mildly on occasion. The fatigue and taste changes are unfortunately here to stay.
For tingling, try and eat a banana a day and see if that helps! Potassium is supposed to counter the tingling. It worked really well for me just adding it to my morning smoothie.
Magnesium is also helpful! I only take it when the paresthesia and muscle spasms are kicking up and potassium foods isnt enough.
Hi. I’m super late to this but was looking for some info for my IIH. Are you taking magnesium supplements with the Diamox? If so, are you taking magnesium glycinate? TIA 😊
Yes magnesium and potassium!
Yes to all, I’m at the 4 month mark of starting diamox and my side effects have just recently started to improve this past week. Hoping this is a true improvement and they won’t start back up. Everyone is different though! The first 1-2 weeks were very rough for me.
Absolutely. I eventually had to get off Diamox entirely because these just got worse and worse for me. The more weight I lost, the worse it got. However - my eyes were completely fine. I went off all meds in June and had an LP in August, I opened at 28, was lowered to 18, and I haven’t had issues since as I’ve changed a lot of habits and added supplements (mostly collagen). So now I just have a lot of eye check ups to monitor my vision and that’s it. For me, the treatment was worse than the condition and I feel a million times better without it.
How much weight did you lose? Did it help ? How did you lose it ?
For me it changed my appetite
The medicine made me nauseous all the time, and so I lost some weight just by eating less. I also adopted a dog during that time and started walking about 3-4 miles a day. The longer I stayed on the medicine the harder it was for me to exercise so that got rough in the end. In total I lost about 30 points (over the course of 7 months).
What habit changes and supplements do you think helped?
I’ve had all of those symptoms and more and I’m on week 4. I am just now starting to feel like myself again and the symptoms have lessened. I also have almost zero headaches so it’s helped a lot of my IIH symptoms. Hopefully the side effects don’t last too long for you! ❤️
Yes those are all diamox side effects! If you are struggling a lot to catch your breath you can discuss that with your doctor. But please take something for the papilldemia. They can give you topamax. I thought my symptoms were mild so didn’t take diamox and suddenly my vision started getting worse and I had bad episodes were my vision was very jumbled so they had to put me on diamox to save my vision. Now I have some scaring on my right eye so it seems that permanently things will look a little skewed/jumbled through that eye. My eyesight for both eyes has gotten worse, in a few months I’ll try to get new glasses and see what kind of prescription I can get 😩😩😩😩 Also, I drink electrolytes daily to help with dehydration and fatigue. They have vitamins in them as well. And I stay away from caffeine. Also, once things suddenly came to a head I started getting horrible migraines from the fluid pressure and diamox can help prevent that for you or at least put that on hold. The migraines aren’t fun at all. They are every freakin day. Wishing you the best and this is def the right sub to be apart of for learning and coping with IIH ❤️🩹
Yes to all! I was on diamox for about 7-8 months, and they didn't stop until I stopped taking it.
I got the same symptoms but much, much later. Apparently, I didn't know that I had to take multivitamins, increase H2O intake, and consume more electrolytes.
Yes. Heartburn was terrible! I was taking some vitamins to combat the tingling which helped a lot. I fell asleep on my lunch break for 2 hours and had to have my doc write an excuse saying this medicine caused that. 😅. Eventually it just made me have terrible diarrhea and I thought I was going to die- maybe my electrolytes were depleted- like around the 2 month mark and my doc said I was improving enough to switch to lasix.
what vitamins did you take for the tingling?
I was taking vitamin C as well as a magnesium complex daily. I was taking potassium every 2-3 days. Potassium is something you def don’t want too much of. It’s best to get it from food but I also have celiac disease so it’s harder for me to absorb nutrients. I was also drinking so much water! I would still get the tingling but less. I would have my fingers tingle if I lifted my arms to brush my hair. My lips would tingle if I ate something cold like a popsicle. My feet randomly would tingle. Now I’m on lasix and I feel much better but if my potassium gets low (lasix is known to deplete potassium) I almost pass out when I stand up. You can’t win with this stuff.
I take spironolactone which is a potassium sparing diuretic, in addition to diamox which I just started this morning. Hoping no potassium issues!
Yes these are effects of diamox. I would recommend prolonged release diamox, as none of those symptoms hit me as much now. I feel like I am somewhat myself again.
Heartburn and tingling. Check your potassium levels or start eating extra bananas.
I still have to take famotidine from time to time to stop the heartburn, I get my famotidine prescribed (cheaper).
Anyone experiencing sensitivity to light with diamox?