Diamox and Tingling: What Users Say

• exw...
• Taken for 10 years or more
• January 22, 2013

For Pseudotumor Cerebri "I have been on Diamox for many years. Started out with tunnel vision and then found to have pseudotumor cerebri (which my mom has too). I have even had lumbar punctures to drain the fluid off my brain as well in the beginning. This medication has worked wonders. I did have tingling and numbness in my feet, finger, nose, lips but that eased off by taking Vitamin C or eating oranges (this was recommended by my doctor and it works). Now the tingling and numbness are gone. I don't know what I would have done without this medication. Now all I do is take the medicine once a day and move on with my life. Please hang in there and don't get discouraged."

• Lew...
• May 2, 2014

For Pseudotumor Cerebri "I was diagnosed with idiopathic intracranial hypertension in the early summer of 2013. I was put on 1000mg of Diamox at the beginning of November 2013 to keep the fluids from damaging more of my vision through swelling of my optic nerves. Felt the side effects within the first hour. Tingling in my hands and feet, some days my face. There were even days when my eyes and lips would twitch. All carbonated drinks taste like drinking battery acid. The first few weeks sucked, but it gets better with time. I just saw my eye specialist yesterday, 6 months of being on the miracle medicine, and the Diamox (and shedding a few pounds) has done its job and not a trace of swelling! I'm able to come off it in a few short weeks. Thank God for good doctors!"

• Lew...
• May 2, 2014

For Pseudotumor Cerebri "I was diagnosed with idiopathic intracranial hypertension in the early summer of 2013. I was put on 1000mg of Diamox at the beginning of November 2013 to keep the fluids from damaging more of my vision through swelling of my optic nerves. Felt the side effects within the first hour. Tingling in my hands and feet, some days my face. There were even days when my eyes and lips would twitch. All carbonated drinks taste like drinking battery acid. The first few weeks sucked, but it gets better with time. I just saw my eye specialist yesterday, 6 months of being on the miracle medicine, and the Diamox (and shedding a few pounds) has done its job and not a trace of swelling! I'm able to come off it in a few short weeks. Thank God for good doctors!"

• Aub...
• December 19, 2017

For Pseudotumor Cerebri "I am 18 years old, and I was diagnosed with pseudotumor cerebri after an allergic reaction to long-term use of tetracyclines for acne. I went to the ER twice, experiencing persistent, debilitating migraines, double vision, and one eye turned to face inward towards my nose, and they were unable to relieve any of it. My eye doctor, after a month of different testing, diagnosed me with pseudotumor cerebri, and a neurologist started me on Diamox, and within two weeks, my eye turned straight again, and the headaches and double vision were gone. I experienced the common tingling in my hands and feet, difficulty drinking carbonated beverages, small rashes, and lethargy from Diamox, but it was all bearable after a week, and within a month, I am fixed."

• Omi...
• July 13, 2015

For Pseudotumor Cerebri "I was just diagnosed with IIH/PTC last week. My neuro started me on Diamox the same day. Although I have had tingling in my hands and feet, as well as lethargy, the pressure behind my eyes has already started to go down. My ophthalmologist was very pleased today with the optic nerve scan and said there has been a decrease of pressure in both eyes. A little tingle here or there and a bit of sleepiness is worth saving my vision! So far, I'm a happy girl!"

• Anonymous
• Taken for less than 1 month
• August 22, 2012

For Pseudotumor Cerebri "Can I just say for the people that are stating they have tingling/numbness with this medicine. I experienced this over a year and a half ago when I was first put on Diamox, they took me off it and put me on Topamax instead. For a year and a bit, I was on Topamax and lost 30kg but the headaches never completely went away. Now I have been put back on Diamox for almost the last two weeks and I find only sometimes will I get any tingling at all... whereas last year when I first tried it I couldn't stand it. What I find works for me is taking the tablet while I'm eating, keeping my fluid up (only water), soft drinks and 'bad' foods do tend to make it worse so I try to stay away from these. I find Diamox really does work if you're prepared to go that extra mile!"

• Anonymous
• July 9, 2010

For Pseudotumor Cerebri "I had swelling around my optic nerves causing vision problems and also had debilitating headaches that got worse with movement and made it impossible to exercise. I lived with it for years unknowingly and got progressively worse. My doctor diagnosed me with pseudotumor cerebri. I have been taking generic Diamox for 3 weeks and haven't had a single headache. I can take my dogs for a walk now. There are 2 side effects I experience: tingling in my feet, which was very bothersome but has lessened, and any beverages with carbonation taste terrible. No sodas, flavored water, beer, wine coolers, champagne. None of it tastes normal/good."

• Cai...
• Taken for less than 1 month
• November 28, 2014

For Pseudotumor Cerebri "I have had IIH since June of 2014 but was diagnosed 'officially' with IIH in May 2014 after my first LP had an opening pressure of 45. I tried Diamox the first time, but it made me so tired I couldn't handle it, and then I went into spontaneous remission, or at least my pulsatile tinnitus went away, and I didn't need to keep taking it. I relapsed about a week ago and had an opening pressure of 55 after having extremely loud pulsatile tinnitus for a week. I was put on 1g of Diamox, and for the past week, the whooshing noise has gotten much, much softer, and sometimes I can't even hear it. I take Vitamin C to help with the tingling and have barely noticed it. I'm thankful my body is responding well this time, but it's different for everybody."

• She...
• February 1, 2015

For Pseudotumor Cerebri "Effective, but not without side effects. The first month was pretty bad - my hands, feet, and legs were falling asleep, and I experienced painful tingling and cramps. My joints also had problems, and I had to wear a brace on my knee for a little while. I was more lethargic. Anything carbonated tasted awful. I couldn't drink caffeine, or my whole body would feel weird and tingly. I also had to pee a lot during the first few weeks and was quite thirsty. Over time, most of the side effects went away, and my pressure went down. My vision problems completely went away. However, a new side effect appeared after about two years - tinnitus. It is definitely being caused by the medicine because I've found that skipping a dose makes it go away."

• Em7...
• November 12, 2017

For Pseudotumor Cerebri "Side effects far worse than idiopathic intracranial hypertension (IIH) itself. Constantly nauseous, made no difference to headaches/pressure, suffered with slight breathing difficulties and palpitations, the tingling in hands and feet was more like cramp than tingling in the end... the list goes on.."

• Anonymous
• Taken for less than 1 month
• January 27, 2015

For Pseudotumor Cerebri "I was diagnosed with Pseudotumor Cerebri 2 weeks ago after experiencing blurry vision and dizziness for some time. I got an eye exam done, and they saw I had a swollen optic nerve. The neurologist prescribed Diamox, told me to lose weight, and stop birth control. I noticed within about 2 days of taking the medication, the blurred vision is completely gone. The doctor told me to ease into the meds, starting with 1/2 of a 250 mg pill 2x/day for a week, then 1 250 mg pill 2x/day for a week, then if symptoms persist, take 3 250 mg pills 3x/day. This helped me get used to the side effects. So far, I have tingling in my fingers and sometimes my mouth. I pee a lot, but am trying to lose weight, so drinking lots of water and eating healthy and no pop is likely helping too."

• Mel...
• Taken for 6 months to 1 year
• January 12, 2017

For Pseudotumor Cerebri "Diagnosed with Chiari Type 1 and Pseudotumor Cerebri in 2008. Started Diamox, and it changed my life. Within days, I was feeling so much relief. Over time, my dose went up, and the next move was an LP shunt, which has worked wonders for almost 8 years. It's starting to fail now, so my revision is scheduled, and I'm back on Diamox in the meantime. Yet again, symptoms under control with it. Yes, I have weird tingling in my face, hands, and legs, and I can't drink carbonated beverages. Oh well - I'm thankful to be functioning and not nauseous and dizzy and disoriented all day long. Diamox is the best thing, other than my shunt, for this disease. Very thankful for it."

• Anonymous
• August 24, 2010

For Pseudotumor Cerebri "I had been diagnosed with pseudotumor cerebri when I was 10 years old. That was 16 years ago, and I have been taking DIAMOX on and off for that long. I get very bothersome tingling that doesn't go away, often waking at night with extremely painful tingling in my feet that causes me to have to get up. I get crippling headaches that hurt when I even breathe, and the last time I was on the medication, the headaches got worse while I was taking it. I am currently back on the medicine and have to go to the bathroom every 10 minutes. I take 1000 mg a day and can no longer drink pop. Anyway, I have good and bad experiences with the Diamox, but the benefits to my eyes outweigh the inconvenience."

• Sar...
• September 18, 2020

For Pseudotumor Cerebri "I was diagnosed with pseudotumor cerebri. Let's start off with for about 3 years I have had the worst pressure headache every single day. One day I noticed I had a new pulsating whooshing sound with my headache. I was vomiting. The next day I went to the store and noticed I couldn't see anything around me. It slowly started to get worse. One day I woke up and could not see at all. They immediately did exams, CT scans, and an MRI. I also saw a specialist ophthalmologist who instantly saw how swollen my optic nerves were and suggested I be admitted for a lumbar puncture. My opening pressure was 54. They drained it to 15. It's almost been a month and I have only had 1 headache. My vision came back but still is not 100% at all. Right now I am on 1,000 MG of Diamox twice a day. I have no complaints about it yet other than tingling in my feet and constant urination. Just make sure you drink lots of water and take a potassium supplement. I'm being seen by neuro-ophthalmology once a week."

• Bob...
• November 20, 2008

For Glaucoma "In a pretty critical situation after cataract surgery, this drug brought it totally in line. Side effects for me were mild, though annoying. Of all of the side effects, a spacey feeling for about 10 minutes the first two times, and tingling fingers and toes. All in all, worth it for short-term treatment."

• Bob...
• November 20, 2008

For Glaucoma "In a pretty critical situation after cataract surgery, this drug brought it totally in line. Side effects for me were mild, though annoying. Of all of the side effects, a spacey feeling for about 10 minutes the first two times, and tingling fingers and toes. All in all, worth it for short-term treatment."

• bir...
• February 15, 2017

For Mountain Sickness / Altitude Sickness "After several bird tours flirting with 10,000 - 11,000 ft elevation, I became suspicious that I was susceptible to altitude sickness. A redirected flight to La Paz, Bolivia (and some unscheduled ascents near Cochabamba) convinced me I was. Typically, I serve as a human altimeter, within minutes of reaching 11,000 ft, I'm puking my guts out. Diamox has been a wonder drug in preventing altitude sickness on tours I've been on since Bolivia. I've traveled from 8,000 ft straight to 14,000 ft several times with no altitude sickness symptoms at all. 125 mg before bed is all I need. Tingling and bad-tasting soda symptoms are greatly reduced at that dosage compared to the 250 mg I initially used."

• ohi...
• Taken for 1 to 6 months
• December 27, 2024

For Pseudotumor Cerebri "Migraine sufferer of 5 years, labeled chronic. Finally got my neurologist to send for MRI, MRA, and LP. Opening pressure was 24 during LP, closed at 19. Started Diamox and built up to 1000 mg daily. 500 mg in the am and 500 in the pm. Symptoms include tingling in feet more than hands, metallic taste lasted the first two weeks. I'm not a huge soda drinker but will have a Coke or Sprite. No issues until I had a Dr. Pepper, tasted like pennies. Yuck! Headache days have decreased from about 20 per month to 2 or 3. Last a couple of hours, then no issues but worse around my cycle. I've also stopped all other medications such as Tylenol, Excedrin, Aleve. My vision has improved as well and not so blurry in the morning. I do still have ringing in the ears occasionally and pulsating in my head, but I give it an A- overall from where I started 2 months ago."

• Sba...
• Taken for 6 months to 1 year
• July 26, 2021

For Pseudotumor Cerebri "First of all, I am happy for everyone that has benefited from this medication. For me, I don't feel this medication has done anything for me. I started taking a small dose, 250 mg, when I was diagnosed with IIH back in September of 2020. Since then, my headaches have not gone away, I am now up to 1625 mg per day. Yes, I have lost 30 lbs. The worst side effects for me are diarrhea, tingling in my feet, ringing in my ears, and all-day fatigue. The lack of energy and the headaches continue to be so massive that they debilitate me so badly, but I have to work like this, either work or be homeless. They also did a lumbar puncture, which caused a tear in my dura, and they had to do an epidural blood patch, and it took a month to recover. I was told that if this medication doesn't help and losing weight, then the next option is a brain shunt. I am just so tired of taking this medication, which I don't see any benefit or help with my headaches, which is what changed my life, and then the constant blurred vision."

• jel...
• Taken for 1 to 6 months
• September 4, 2019

For Pseudotumor Cerebri "Makes my feet tingle, and I hear ringing in my ears all the time."

• Mar...
• Taken for less than 1 month
• November 6, 2022

For Glaucoma "It's made me extremely dizzy and nauseous. No appetite at all. My one hand was occasionally tingly but livable. I stopped it after 3 days."