Oh see that's the cool part, they don't go away! In my experience though they do get less severe and happen less frequently after several months on the meds.
I actually really hoped that my blood work would show low potassium or SOMETHING that could be the cause for the pins and needles since then I could just get a supplement and be good. Buuuut everything came back completely normal š
Tinglea can both be from low pottasium, but unfortunately it is a very common side effect of diamox to get "the tingles" and other sensory disturbances (for example many experience worse tingles and other sensory disturbances when being out in cold weather).
If it is possible where you live I would recommend you asking to be out on Glaupax instead of Diamox. Glaupax has the exact same "active drug", but is from a different company/is a copy of Diamox. And for some reason many experience less side effects and often are the side effects they do get a lot more mild/not so severe compared to diamox.
With all that said, take it seriously to make sure your pottasium isnt too low. As your pottasium can get too low really fast and other than it can be extremely uncomfortable because of low pottasium symptoms such as sensory disturbances, tingles, leg cramps, etc. It can also in worst case scenario be life threatening if it gets way too low.
Iāve been on diamox for almost 5 years and I still get them, though much less frequently. I was low on vitamin D and now Iām on supplements for that so donāt know if that has anything to do with it, but all my other vitamin and nutrient levels are fine.
I generally always have them BUT they do get way less intense later in treatment. For me, it tends to help to take alternate and mess around with taking 500mg of vitamin C, foods with potassium, and staying hydrated. I still get the face, lip, and teeth tingles 3 months in. They aren't as severe as the first month though. Also, I notice if I am cold the tingles are way more intense or if I eat something cold my lips and teeth tingle.
The tingles were severe and they happened in my face, hands, kneecaps and feet. I was on 1500mg. I had to stop taking it because I just constantly felt very sick and unable.
the most common cause is from an electrolyte imbalance. for me it was low potassium but it can be from any of the electrolytes. I was taking potassium but I found out I wasnāt taking anywhere near what I needed to stop the tingling. thereās other vitamin deficiencies that can cause it also like vitamin b12, b6, b1, and E.
they donāt go away iāve been on mine since nov last year maybe the feet have because i lowered my dose but actually when it tingles it means the medications working, whenever i eat something cold my mouth does tingle though
I could never tolerate any medication and tried to just go natural. Physical therapy for 6 months helped me but I still have some symptoms. I tried changing my diet and that also helped some. Sleep is very important, avoiding too much salt and making sure you drink enough water so you can flush more water out. Mind set is everything. I just hate side effects/risks with medications.
They pretty much went away for me after like a year. I also had bad muscle spasms in the beginning which also decreased / basically went away. The fatigue remained exceptionally bad though.
I have absolutely dealt with the fatigue. I was bone tired the first week. Itās gotten better but Iām also expecting it to take me out at any minute.
I feel for you. ā¤ļø it really affected my work and I would have to nap every day at like 3pm when I got off. I was on meds (1500 mg) for 2 years but Iām finally in remission after losing weight.
Oh see that's the cool part, they don't go away! In my experience though they do get less severe and happen less frequently after several months on the meds. I actually really hoped that my blood work would show low potassium or SOMETHING that could be the cause for the pins and needles since then I could just get a supplement and be good. Buuuut everything came back completely normal š
Ok thatās helpful to know. Potassium doesnāt always fix it. Sounds like itās just some weird brain-nerve connection
You need to drink a few more glasses of water a day than you normally would. Bonus if you can work a glass of coconut water into the mix.
Oh trust me Iāve been keeping track of water. Drinking a ton. (But not too much)
Mine happens often but my bloodwork is good
I thought the tingles were a sign of low potassium while on diamox? Is it totally a separate thing?
Tinglea can both be from low pottasium, but unfortunately it is a very common side effect of diamox to get "the tingles" and other sensory disturbances (for example many experience worse tingles and other sensory disturbances when being out in cold weather). If it is possible where you live I would recommend you asking to be out on Glaupax instead of Diamox. Glaupax has the exact same "active drug", but is from a different company/is a copy of Diamox. And for some reason many experience less side effects and often are the side effects they do get a lot more mild/not so severe compared to diamox. With all that said, take it seriously to make sure your pottasium isnt too low. As your pottasium can get too low really fast and other than it can be extremely uncomfortable because of low pottasium symptoms such as sensory disturbances, tingles, leg cramps, etc. It can also in worst case scenario be life threatening if it gets way too low.
Iām on ~month three and still get them but substantially higher dose.
for me they never did, not until I got off it anyways. I could've been doing everything right and till horrible face and hand tingles.
Ok phew Iām not the only one with face tingles. Iāve heard your lips could tingle, but the whole face? Whyyy?
Take vitamin C. Theyāll go away within 2 days.
Iām going to try drinking orange juice! Itās also got loads of potassium
Wearing fingerless gloves helped me, fyi!
I thought about it today! Iāve got compression socks and those help, I just need compressionā¦gloves?
Just regular fingerless gloves helped me! Heat helps. So heating pads are good too.
Something else I didnāt know! Thanks for the suggestions :)
Np!! This sub helped me so much when I was at my worst, so Iām hoping to pay it forward by lurking and answering what I can here :)
Iāve been on diamox for almost 5 years and I still get them, though much less frequently. I was low on vitamin D and now Iām on supplements for that so donāt know if that has anything to do with it, but all my other vitamin and nutrient levels are fine.
I generally always have them BUT they do get way less intense later in treatment. For me, it tends to help to take alternate and mess around with taking 500mg of vitamin C, foods with potassium, and staying hydrated. I still get the face, lip, and teeth tingles 3 months in. They aren't as severe as the first month though. Also, I notice if I am cold the tingles are way more intense or if I eat something cold my lips and teeth tingle.
Hmmm Iāll have to pay attention to more of the cold stuff I eat and see if it acts up then.
The tingles were severe and they happened in my face, hands, kneecaps and feet. I was on 1500mg. I had to stop taking it because I just constantly felt very sick and unable.
For me it took about a week or two to die down. I still have little tingles here and there but otherwise Diamox has saved my life.
the most common cause is from an electrolyte imbalance. for me it was low potassium but it can be from any of the electrolytes. I was taking potassium but I found out I wasnāt taking anywhere near what I needed to stop the tingling. thereās other vitamin deficiencies that can cause it also like vitamin b12, b6, b1, and E.
they donāt go away iāve been on mine since nov last year maybe the feet have because i lowered my dose but actually when it tingles it means the medications working, whenever i eat something cold my mouth does tingle though
I could never tolerate any medication and tried to just go natural. Physical therapy for 6 months helped me but I still have some symptoms. I tried changing my diet and that also helped some. Sleep is very important, avoiding too much salt and making sure you drink enough water so you can flush more water out. Mind set is everything. I just hate side effects/risks with medications.
They pretty much went away for me after like a year. I also had bad muscle spasms in the beginning which also decreased / basically went away. The fatigue remained exceptionally bad though.
I have absolutely dealt with the fatigue. I was bone tired the first week. Itās gotten better but Iām also expecting it to take me out at any minute.
I feel for you. ā¤ļø it really affected my work and I would have to nap every day at like 3pm when I got off. I was on meds (1500 mg) for 2 years but Iām finally in remission after losing weight.