Acetazolamide and Tingling: What Users Say (Page 3)

• Cri...
• July 28, 2010

For Pseudotumor Cerebri "I have been taking this medicine for a few weeks now. My neurologist looked in my eyes and caught the pseudotumor cerebri. He immediately sent me for a brain scan and a lumbar puncture the next day. He thinks it was caused by minocycline, which I had been taking for my acne. I am also having to see an optometrist on a regular basis to check for vision loss. My neurologist took me off propranolol (headache preventative), the antibiotic, and all my prescription face creams. I am on 750 mg right now but will be on 1000 mg in a few weeks if tolerated well. My massive headaches are gone, the heartbeat in my ear is gone. The only side effects I have are the tingling in my hands and feet, sodas taste flat, my appetite is gone, and I am tired a lot. I have to have blood work often."

• Lit...
• Taken for 1 to 6 months
• November 27, 2014

For Pseudotumor Cerebri "I was diagnosed with pseudotumor cerebri a little over 2 months ago, after many visits to doctors, nurses, and hospitals. Then an amazing neurologist who finally gave me an answer as to what was causing all my problems. I have since had 2 spinal taps and have another still to come, she is looking at doing bi-weekly. But since starting this medication, I have regained most of my vision, which I had lost most of. I do miss my coffee, but tea still is okay. I have an allergy to the pills, so I take medication to stop the hives and itching, and sometimes the pins and needles in my legs bring me to tears. My face tingling makes me giggle, the twitching in my face does drive me crazy, but really it's all better than going blind or getting the shunt."

• Ela...
• Taken for less than 1 month
• June 5, 2019

For Mountain Sickness / Altitude Sickness "Ok, so I got these pills for altitude sickness in Peru, and I got told to take one half in the morning and one half at night, two days before high altitude. So I took a half when I arrived in Arequipa, around 2300 m above sea level. With only one small half, my hands started tingling, my whole face, and my knees, and even the upper part of my back. I couldn’t even walk correctly. Now it’s been around 27 hours, I only took the half mentioned, and my hands are still tingling. It is very annoying and ruined my first day in Arequipa. I won’t be taking them anymore, I prefer dealing with altitude sickness with coca gum and leaves rather than not being able to use my body correctly. Also, it’s true, you go to the bathroom all the time, so it’s no good if you are trekking and don’t have easy access to a toilet."

• Ela...
• Taken for less than 1 month
• June 5, 2019

For Mountain Sickness / Altitude Sickness "Ok, so I got these pills for altitude sickness in Peru, and I got told to take one half in the morning and one half at night, two days before high altitude. So I took a half when I arrived in Arequipa, around 2300 m above sea level. With only one small half, my hands started tingling, my whole face, and my knees, and even the upper part of my back. I couldn’t even walk correctly. Now it’s been around 27 hours, I only took the half mentioned, and my hands are still tingling. It is very annoying and ruined my first day in Arequipa. I won’t be taking them anymore, I prefer dealing with altitude sickness with coca gum and leaves rather than not being able to use my body correctly. Also, it’s true, you go to the bathroom all the time, so it’s no good if you are trekking and don’t have easy access to a toilet."

• Mar...
• Taken for less than 1 month
• June 17, 2017

For Pseudotumor Cerebri "I was just recently diagnosed with high intracranial pressure with no papilledema and a huge blind spot in my left eye. I was told that a spinal tap would only cause a leak since I have a connective tissue disorder. I got an MRI and CT, and everyone said they were normal except for Dr. Driscoll. She started me on Diamox, and it has done wonders!!! I can see at dark now, and I don't have constant eye pain/pressure, neck pain, or problems sleeping. I have to sleep with a soft cervical collar and had to raise the head of my bed to make sure the fluid continues to drain even when sleeping. I do have numbness and tingling, but it's more amusing to me than painful. It is difficult to keep your CO2 levels at 22, but use alkaline H20."

• Bri...
• April 20, 2018

For Pseudotumor Cerebri "I felt horrible for the first two weeks after being diagnosed with pseudotumor cerebri and taking the medicine 1000 mg a day. The tingling in my hands, face, and toes comes and goes. I have had no more headaches or pressure in my sinuses since the first few weeks of starting it."

• Ble...
• February 13, 2018

For Hydrocephalus "I am currently on this medication, 500 mg, 2x a day to treat the excess fluid gain on my brain that causes seizures. The first dose of this medication, I instantly had a really bad taste for soda and for most anything that I ate or drank. I experienced extreme tiredness, dizziness, headaches, and had a decrease in appetite. After about 2 days, I noticed numbness and tingling in my hands and feet, ringing in my ears, a stabbing pressure pain in my eyes, and abdominal pain. I had to pee every 20-30 minutes and had extreme diarrhea instantly after every meal, all my bowel movements are diarrhea. After telling my neurologist about it, he said they are common and to take it once a day for 2 weeks to let my body adjust, then back to 2x. I fluctuate back and forth with the once and twice a day because he will not let me stop taking it, and all of the effects still remain after 8 months of treatment, but it has decreased the fluid levels on my brain, and I lost 30 pounds are the only benefits."

• Cal...
• Taken for less than 1 month
• September 10, 2016

For Pseudotumor Cerebri "I was just diagnosed with Pseudotumor Cerebri after 3 years of medical issues. Started losing my eyesight, and then they found a blood clot in the main artery of my brain. Once the blood clot was treated, I still had fluid behind my eyes, headaches, foggy brain, and no energy. The Diamox has helped the foggy brain. The side effects weren't bad, I had tingling for a few days, a metallic taste, and drowsiness. The drowsiness is the worst part because several other medicines I take cause drowsiness also. I did have pain in my joints for the first two days, but it went away. I have lost 8 lbs since starting it. I will find out at the end of the month if the fluid buildup behind my eyes is gone."

• T n...
• Taken for 1 to 6 months
• September 6, 2015

For Edema "Been taking this for an autoimmune disorder that attacks my inner ear nerve. We're still working on determining which one. I am pretty much completely deaf in my right ear (4%). My left one started going, and I ran to a new DR. My ENT, specialized in this area, first put me on another diuretic (after steroid injections and treatments which worked, but were not a good long-term treatment plan), and we noticed no improvement. Once on Diamox (generic), my speech recognition went from 72 to 88% over 2 months! Like many of you, it wasn't long before the side effects started. The tingling was immediate. But my DR had warned me. I didn't know what to do about it, though, until I saw your posts about Vitamin C."

• Rob...
• August 21, 2015

For Pseudotumor Cerebri "I absolutely hate it. Every time I take it, I can't eat anything or drink anything with caffeine. It tastes like copper or way off. After taking the medicine for 7 months straight, I was in so much pain I couldn't walk, I felt weak and sick. I took myself off, and I felt great. But my eyesight hadn't changed. I developed carpal tunnel on this medicine. This is what that tingling sensation is. Get it checked. Remind y'all I'm only 27 years old. I shouldn't have all this. I recently started taking it again, and it's all the same symptoms again."

• Pho...
• Taken for less than 1 month
• June 23, 2019

"I have suffered with migraines and severe dizziness and vertigo since I was 6. Neurologist put me on this. I've only taken it for 2 days, but my headaches and dizziness are worse. I feel so tired. I have double vision, excessively thirsty, and tingling in my face, hands, and feet like pins and needles. I knew it wasn't going to work for my vertigo but was hoping I could tolerate it long enough to get the weight loss side effect, but I'd rather stay fat."

• Tyl...
• Taken for 2 to 5 years
• May 13, 2021

For Hydrocephalus "I had brain surgery on a very large benign cyst 5 years ago. For 3 years, I was symptom-free post-surgery. I elected not to have a shunt because there was a chance I would never have a problem again. Well, hydrocephalus slowly came back, so I got put on Diamox (acetazolamide). The tingling was weird, but it went away. The dry mouth is annoying, and needing to pee every single night is also a nuisance. But honestly, I could not survive without this pill because it stops my pain and my dizziness, and I can run, jump, lift weights like normal (aside from the heat, peeing a lot, and all that). It is difficult, but for me, it seems better than another brain surgery or a shunt that could break or get infected."

• kdg...
• Taken for less than 1 month
• July 18, 2016

For Pseudotumor Cerebri "Finally diagnosed with idiopathic intracranial hypertension without papilledema after nearly 4 years of messing around with doctors who didn't believe anything was wrong, because my situation doesn't involve the optic disk swelling. Was started on Diamox 500 mg a day. After 14 days, severe stomach pain, I couldn't even drink water. Neurologist told me to stop taking it. The tingling, which is everywhere, turns to sheer pain if you're out in the wind. By day 10 of taking the medicine, my lips started to purse on their own. My kids laughed because I had 'duck face' for several days, even after stopping the med. Now I'm back on it, 125 mg/day, same side effects. Sucks. Did not help my symptoms the first time, and hasn't yet."

• The...
• Taken for 1 to 6 months
• July 27, 2020

For Pseudotumor Cerebri "I started on acetazolamide for pseudotumor and was originally put on 1000 mg a day, 500 mg AM and 500 mg PM. I was getting really awful headaches, so my doctor took me down to 250 mg in the AM and 250 mg in the PM for a week. After that week, I went back up to 500 mg in the AM and 500 mg in the PM. The side effect symptoms I have were that everything carbonated tasted like metal, so I can only drink water, tea, and juice. My hands, feet, and lips tingle like the same tingling when your feet fall asleep. It's annoying, but it doesn't affect my grip, and it's not painful. I also pee all the time, and I'm dealing with some acid reflux. But it is not too bad. My pain before this medicine is almost completely gone! I was scared to start this medicine after reading all the awful reviews, but now, I'm thankful I started it!"

• Bkc...
• Taken for 2 to 5 years
• November 3, 2012

For Pseudotumor Cerebri "I developed a pseudotumor over the course of a weekend. My intracranial hypertension onset was so fast because it was brought on by taking an extended round of tetracycline for a persistent sinus infection. My dosage of Diamox had been 1000 mg/day, but it was flushing my antidepressant out of my system too fast, so it was lowered to 500 mg/day. The tingling went down, too. I still can't drink carbonated drinks, but that's better for my weight loss anyway."

• Jud...
• Taken for 2 to 5 years
• February 9, 2020

For Pseudotumor Cerebri "I was diagnosed with pseudotumor cerebri in 2017 and have been on this medication for over 2 years. Together with a healthy diet and exercise, I've managed to lose about 20 kg, so I have been slowly allowed to go off it. My papilledema has improved significantly to the point where it is unnoticeable, and I'm currently 'under observation.' During my time on this medication, I've experienced some tingling in my extremities, dry mouth and coughs, changes in the taste of certain foods, and GI issues such as heartburn. I did have to get back on it after about two months off due to taking ADHD medications, which elevated my ICP, but the GI issues were so severe that my neurologist prescribed me a different medication since my ICP is now under control. This medication has some severe side effects, but it also works, and in my case, it helped save my eyesight, and it's preferable to having a lumbar puncture every few months."

• Kla...
• August 30, 2015

For Hydrocephalus "I have postop hydrocephalus from a pineal cyst being removed with my pineal gland. I had brain surgery in December, all my symptoms went away, and then I got some double vision and my eyes showed papilledema. I had a spinal tap and went from 30 to 6 and then had a blood patch. I started my second round of Diamox the day of the spinal tap. I remembered the tingling and no appetite and no taste for caffeine. I forgot I would pee all night and be tired for the first little while. Just ready for these first symptoms to pass. I'm on 500 mg twice a day and gonna take vitamin C to help with tingling."

• She...
• Taken for less than 1 month
• August 23, 2018

For Glaucoma "I am home from cataract surgery, have taken 3 pills. The soles of my feet were tingling with such intensity they hurt. Did not last long, then around my mouth started tingling, feels like I ate a mango, which I am highly allergic to. Afraid to take the last one."

• Chi...
• Taken for 6 months to 1 year
• April 18, 2017

For Pseudotumor Cerebri "I was 19 when I was sent from my small town and county to have tests done. I'd had symptoms from age 12 when I was put on birth control pills for PCOS. The doctor from San Francisco put me on Diamox and prednisone and ordered my family doctor to do a spinal tap when I had eye problems or severe headaches (he did at least three per week for two years). My family doctor took me off the prednisone after a few months, and I gained over 100 lbs. The Diamox caused me weird side effects. My face was all 'tingling', everything I ate or drank tasted metallic (especially if it was fruit or carbonated). Eventually, the tingling started down my neck, chest, and hands/arms. So my doctor took me off it and gave me hydrochlorothiazide (it may be misspelled). I've learned Diamox causes it a lot."

• Cat...
• December 12, 2016

For Seizure Prevention "I have been on this drug for a month or so now because of daily/chronic headaches that started after I was in a motorcycle accident. Eight years of my life spent every moment with a headache, and I have been everywhere for help, even to the Mayo Clinic, and no one could find a medication to help me. Finally, this was prescribed as a last attempt since it is not FDA approved to treat headaches, and since I have had at least two weeks with a headache that is much more improved than before, I can actually function most days now. This medication causes me to have severe muscle aches, weakness, fatigue, tingling in hands, feet, and face, along with nausea, but it's still better than how I was before."

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

Acetazolamide 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."

• Mol...
• Taken for 1 to 6 months
• June 28, 2018

For Hydrocephalus "I have Chiari Malformation Type 1. (Basically, part of my brain is squeezing through the opening at the base of the skull where the spinal cord enters, and is putting pressure on the spinal cord - it's a congenital thing in almost all cases, but for me, it wasn't diagnosed until age 34. I have scoliosis, chronic pain, and chronic migraines all caused by the Chiari.) Was put on 125 mg Diamox twice a day. So far, it's reduced the severity of my migraines but not their frequency, and hasn't done anything for the pain. The tingling is the only side effect that hasn't gone away, and most of the time it doesn't bother me, but sometimes it's intense enough that I feel like I'm suffering oxygen deprivation from hyperventilating - my hands even start to go stiff. If I didn't know it was a med's side effect, it'd be pretty worrying. Still, more pros than cons for me."

• Ano...
• Taken for less than 1 month
• April 17, 2025

For Glaucoma "I have been taking this medication after an SLT laser procedure. About 6 days after the procedure, my eye pressure was at 47, then went up to 50. The doctor prescribed acetazolamide, and I have experienced nausea, diarrhea, chills, and some tingling in my fingers. My vision was very blurry before taking the medicine, and now it seems to have cleared up a bit. My appetite has come back, and I'm no longer nauseous, but I am still having headaches or pressure on the temples. Not sure if these are all good signs that my eye pressure is getting better, but I want to get my vision back and resume normal activities."

• Bri...
• September 17, 2021

For Pseudotumor Cerebri "This medication is absolutely horrible. I’ve been on it for only a week and have been experiencing every side effect. Now I have blurred vision and no one has the answers. The doctors lied and said it had something to do with weight. I weigh 189 and am 5’1. I don’t have glaucoma or high blood pressure, never had a seizure. This medicine has altered my whole body, and I cannot function. I lost my appetite and taste. I feel numbness and tingling in my hands and feet, etc. I WOULD NOT RECOMMEND THIS MEDICINE TO ANYONE."

• Dia...
• Taken for 1 to 6 months
• November 17, 2023

For Pseudotumor Cerebri "My side effects started immediately after the first dose. I literally felt like someone was putting thorns through my feet and knee joints-a mixture of tingling and pricking sensation. As I write this, it has been seven weeks into Diamox, and I do not have any tingling. This feeling has been subsiding over time. I have remained fatigued since I started taking the drugs. This couples with dizziness, and people interpret it as laziness. It is sad, but I am positive that it will also fade. Main concern right now: tremors! My fingers are almost as shaky as those of a patient with Parkinsonism, especially the thumb. My upper lip, eyes, and facial muscles are also almost always in a tremor. Unfortunately, my neurologist just says I will be fine. Tip: Take potassium-rich foods."