Acetazolamide and Tingling: What Users Say

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

Acetazolamide 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

Acetazolamide 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

Acetazolamide 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!"

• Say...
• July 1, 2015

For Pseudotumor Cerebri "Very good. Headache has gone, feeling much less foggy and dizzy. Everything's going well. It's only been two days, and I'll review in a month or two. I just want everyone who's scared of taking it because of the horror stories to realise it's not bad. I've had slight tingling, but it's just like pins and needles. I've lost 4lb (which I'm assuming is water). When my doctor prescribed it, he said that the people that stop taking it are those that misinterpret the symptoms as dangerous. This is a mild diuretic, and as such is very safe for most people. The tingling is normal - apparently Vit C can help, and I've taken one this morning and had no tingling. If you're thinking of taking it, try not to google reviews - most people with positive experiences don't comment, they just get on with their lives. I've vowed to come back to every IIH thread I can find and discuss my recovery to show that there are positive stories. My doctor says he gets a new diagnosis of this every week. It's not as rare as 1/2:100000. He sees it every week and he sees many people recover promptly. Yes, it's horrible. Yes, the symptoms feel like they'll last forever (especially if you google, because all you see are the worst-case scenarios. The ones who are over it just get on with their lives, though I wish more would come back and tell us!), but for most people, life becomes liveable again. I've had it 3 years now, diagnosed for 1 year, and on meds for 2 days, and I can feel a massive improvement."

• Mnm...
• Taken for 1 to 6 months
• December 15, 2020

For Pseudotumor Cerebri "I am taking acetazolamide 500 mg twice daily for pseudotumor cerebri. I had to have a lumbar puncture to relieve the pressure. My neurologist says that I need to plan to take this medication for at least 2 years. You can’t drink soda when you’re on this medication. It tastes like acid burning your tongue and throat if you try to drink it. When I first started this, I had terrible tingling in my face, lips, and the top of my head. Now it is rare for me to experience this. I experience tingly fingers multiple times daily. I have tingling and uncomfortable feet at least once or twice daily. It’s not necessarily numb - it’s an uncomfortable pins and needles feeling. No one else has stated this, but I feel like I have to urinate all of the time, but when I pee, it feels like I can’t go all of the way, like I’m unable to empty my bladder. Overall, the medication does what it is supposed to, and the fluid and pressure have decreased dramatically in just 5 months. I hate the side effects, however."

• Mnm...
• Taken for 1 to 6 months
• December 15, 2020

For Pseudotumor Cerebri "I am taking acetazolamide 500 mg twice daily for pseudotumor cerebri. I had to have a lumbar puncture to relieve the pressure. My neurologist says that I need to plan to take this medication for at least 2 years. You can’t drink soda when you’re on this medication. It tastes like acid burning your tongue and throat if you try to drink it. When I first started this, I had terrible tingling in my face, lips, and the top of my head. Now it is rare for me to experience this. I experience tingly fingers multiple times daily. I have tingling and uncomfortable feet at least once or twice daily. It’s not necessarily numb - it’s an uncomfortable pins and needles feeling. No one else has stated this, but I feel like I have to urinate all of the time, but when I pee, it feels like I can’t go all of the way, like I’m unable to empty my bladder. Overall, the medication does what it is supposed to, and the fluid and pressure have decreased dramatically in just 5 months. I hate the side effects, however."

• Mnm...
• Taken for 1 to 6 months
• December 15, 2020

For Pseudotumor Cerebri "I am taking acetazolamide 500 mg twice daily for pseudotumor cerebri. I had to have a lumbar puncture to relieve the pressure. My neurologist says that I need to plan to take this medication for at least 2 years. You can’t drink soda when you’re on this medication. It tastes like acid burning your tongue and throat if you try to drink it. When I first started this, I had terrible tingling in my face, lips, and the top of my head. Now it is rare for me to experience this. I experience tingly fingers multiple times daily. I have tingling and uncomfortable feet at least once or twice daily. It’s not necessarily numb - it’s an uncomfortable pins and needles feeling. No one else has stated this, but I feel like I have to urinate all of the time, but when I pee, it feels like I can’t go all of the way, like I’m unable to empty my bladder. Overall, the medication does what it is supposed to, and the fluid and pressure have decreased dramatically in just 5 months. I hate the side effects, however."

• Aub...
• December 19, 2017

Acetazolamide 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

Acetazolamide 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

Acetazolamide 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

Acetazolamide 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

Acetazolamide 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

Acetazolamide 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

Acetazolamide 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

Acetazolamide 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

Acetazolamide 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

Acetazolamide 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."

• rls...
• July 4, 2019

For Edema "My ENT prescribed Diamox for Meniere's disease, a buildup of fluid in the inner ear. I will experience tinnitus, vertigo, ear fullness, and visual disturbances, including light sensitivity. Once starting Diamox, all of my symptoms were significantly minimized. I also struggle with migraines and noticed since taking Diamox, I have not had one episode. Like others, I experience diarrhea, but increasing my daily water intake has helped. I too also experience tingling in my hands and feet, but it's not intense. I just learned this medicine can suppress appetite, and this does occur with me. I also have more energy, so much, most nights I have insomnia. Has anyone else experienced this? Overall, for me the benefits certainly outweigh the costs. I've been granted a new outlook on life. Before Diamox, the Meniere's left me in a fog, both in vision and hearing. If anyone has also experienced trouble sleeping, please share what you have found to help, I would love to hear it!"

• Rai...
• January 26, 2014

For Pseudotumor Cerebri "I have been on acetazolamide 500 mg 3x per day. On the first day, I experienced tingling in my feet that lasted at most 5 minutes, and I woke up disoriented on whether it was 9 the same night, the next night, or the next morning. I have a ridiculously busy schedule, and I'm always tired, so I am still unsure if I have experienced fatigue due to the medicine. Get the capsules instead of the tablets if possible. Tablets release all 500 mg at once. The capsules release little by little, so you don't get all the side effects just dumped on you. With the capsules, side effects seem to be lighter in intensity. Soda tastes like crap. I already urinate frequently due to my water intake. My pseudotumor symptoms have disappeared, though."

• Sar...
• September 18, 2020

Acetazolamide 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."

• Sam...
• Taken for 6 months to 1 year
• April 23, 2019

For Pseudotumor Cerebri "Acetazolamide isn’t fun, but it does work really well for me. The headaches and vision loss I was suffering from pseudotumor cerebri were way worse than the side effects of this medicine. I haven’t noticed any of the side effects alleviating over time. I experienced my hands, mouth, and feet tingling so much it hurt. It would wake me up at night, and I’d have to walk around till the tingling stopped. My mood and energy have definitely been low since taking this medication. The worst side effect is probably the way food tastes, for me, it is almost everything, not just carbonated beverages."

• Nat...
• Taken for less than 1 month
• August 27, 2019

For Hydrocephalus "I’m on my 5th day of this acetazolamide tablet now. For intracranial hypertension, I made an appointment at the optician's as I had been suffering from disturbed vision and dizziness for around a year. I went to the optician's, where they found my optical nerves were inflamed. I went to the hospital, had CT and MRI scans which were normal. Had a lumbar puncture which revealed excess fluid on my spine, so they drained some out. For anyone who says that spinal taps aren’t painful, they’re lying. It was horrible. They then put me on these tablets to prevent the fluid from reproducing. Blurred vision and dizziness seem to be my main symptoms, along with tingling fingers and toes. I am determined to stick this out though, as I have read great things about it."

• Nat...
• Taken for less than 1 month
• August 27, 2019

For Hydrocephalus "I’m on my 5th day of this acetazolamide tablet now. For intracranial hypertension, I made an appointment at the optician's as I had been suffering from disturbed vision and dizziness for around a year. I went to the optician's, where they found my optical nerves were inflamed. I went to the hospital, had CT and MRI scans which were normal. Had a lumbar puncture which revealed excess fluid on my spine, so they drained some out. For anyone who says that spinal taps aren’t painful, they’re lying. It was horrible. They then put me on these tablets to prevent the fluid from reproducing. Blurred vision and dizziness seem to be my main symptoms, along with tingling fingers and toes. I am determined to stick this out though, as I have read great things about it."

• Sha...
• Taken for 1 to 6 months
• April 4, 2021

For Pseudotumor Cerebri "I've been taking this medication for about a month so far. My opening pressure was 36, but I also was throwing up and flopping from an anxiety attack with a needle in my back, and that caused me to be laid up for 2 months alone. When I first started this medication, it was miserable to say the least. I had tingles in my hands, feet, and face, felt nauseous and weak, lightheaded, had chest pain, also skin peeling. Most of it went away after 2 weeks with a little help of lemonade for nausea and walks as much as I could. I went to see my neuro-ophthalmologist, and in 18 days I'm done, my swelling is gone and my eyesight is wonderful. It definitely is a struggle to get on this bandwagon of a med, but it works-I can vouch for that. Just remember, lots of potassium and protein really help too. Hope this helps for others, there is a light in the tunnel, and there are other medications if this isn't a suitable one for you. A shunt should be the last option due to all the risk factors that happen with it."

• Jil...
• Taken for less than 1 month
• May 31, 2019

For Hydrocephalus "I was diagnosed with idiopathic intracranial hypertension (IIH) a week ago and have been on the Diamox for a week. It’s been a week of awfulness. Hands, feet, and full face are numb and tingling. I also feel thumping in my face. I’m so tired and just sick. I’m nauseous, major anxiety, I feel like I have the flu. I’m trying to get through this, but I don’t know how much more I can take. I don’t know if there’s a different kind of medicine I can take for IIH. [If you check the internet, there is an article in Medscape about idiopathic intracranial hypertension (IIH)]"