Acetazolamide and Numbness: 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."

• 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!"

• Qua...
• Taken for less than 1 month
• March 16, 2013

Acetazolamide for Pseudotumor Cerebri "I was just diagnosed last week with PseudoTumor Cerebri. I had my first spinal tap yesterday. I started Diamox today. About 4 hours after the first dose, I took a sip of Mountain Dew and about vomited. It tasted like drinking melted nails. My appetite is lessened, which I am so glad about. I am 60 lbs overweight. My mouth is dry and my lips are somewhat numb. But from everything I have read, the side effects of this medication or any other would have to be really bad before I'd say I can't take this medication anymore. I pray the meds work so I do not need a shunt. I did not think of this as a disease. I thought it was just an occurrence like reflux or migraines."

• 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)]"

• Lee...
• April 11, 2021

For Pseudotumor Cerebri "I have been diagnosed with IIH (Idiopathic Intracranial Hypertension), they put me on Diamox. I am a rarer case because I am a thin woman compared to most. They hoped the Diamox will help bring down the fluid. I started on 250 mg twice daily. Anything carbonated tasted dull and metallic. My entire body will tingle and go numb, but at different times throughout the day, multiple times. The worst experience for me is I am peeing all the time, and my face is also breaking out, and my hands are numb and tingling for hours throughout the day. Overall, the pins and needles in my feet up to my knees are so painful. It feels like glass or knives, and this is no exaggeration. I am left in tears, and it happens many times a day on each leg, and I wake up out of my sleep several times a night. My neuro said it gets better over a span of 2-3 months, and now it has been 5 months. He upped my dose, and I am absolutely miserable. My neuro says I cannot stop unless surgery because it will lead to permanent vision loss."

• Can...
• August 31, 2015

Acetazolamide for Pseudotumor Cerebri "I have been taking this for a month, and my blood sugar keeps dropping out. I feel terrible and weak all the time. I get numbness everywhere. I have three sons to care for, and it's hard. I'm glad most of my symptoms seem to be normal, as I have read yours. The pressure in my head hasn't lessened, though. They gave me migraine medicine, but I'm afraid to take it if it'll put me to sleep during the day. I keep thinking about calling my neurologist. I'd like to know what to do at this point."

• Thu...
• February 27, 2016

For Pseudotumor Cerebri "Have been on Diamox for 3 weeks. Started on 250 mg bid for one week, then increased to 750 mg for 1 week, then increased to 500 mg bid for a total complete dose of 1000 mg a day. Numbness and tingling of hands and feet started almost immediately after the 1st dose. With the increase to 750 mg, (500 mg in the am and 250 mg in the afternoon), I started getting horrible knee pain in both knees. I still have a pulsing sound in my right ear. Constant, remains unchanged. Optic disks and papilledema and retinal damage due to IIH. Have not seen any changes or benefits due to this medication at this time. The side effects are rough. I was told by the neurologist my body would automatically adjust over time to the side effects. Not sure how much longer I can continue on the med."

• jlm...
• Taken for 6 months to 1 year
• September 21, 2020

For Pseudotumor Cerebri "I have been on Diamox since July 2019. I take it to treat my idiopathic intracranial hypertension. I was getting really bad headaches, and my vision was blacking out. I started on 250 mg once in the morning and once at night. I noticed almost immediately that my vision wasn’t blacking out anymore. I was still getting headaches, which I didn't think were going to go away because I have been getting migraines since I was 7 years old. At first, the side effects were very prominent. My hands and feet would tingle all the time and go numb. I was always hearing a loud swooshing sound followed by a ringing in my ears. It has been over a year since I started taking Diamox, and now I take 1000 mg once in the morning and once at night. I still deal with migraines, but the pressure in my eyes has decreased significantly. My feet still tingle sometimes, and the ringing in my ears still happens. I would rather deal with those two things than lose my vision multiple times a day."

• Kay...
• Taken for less than 1 month
• September 23, 2016

For Pseudotumor Cerebri "I have been taking this medicine for only two weeks after being diagnosed with pseudotumor cerebri, and it is awful. I feel like everything is getting worse. Before the medication, I already had the ringing in my ears, the terrible headaches, and occasionally I had numbness in my face, hands, and legs, along with many other symptoms. Now, since taking this medication, the ringing and headaches are EXACTLY the same, if not worse, and my feet are killing me, they are constantly 'asleep' with the feeling of tiny thumbtack jabs all over. It's multiple times a day: walking, standing, sitting, lying down. I feel worse now than I did before. I don't know what to do, but I know I cannot continue like this. I know that everyone reacts differently."

• Kay...
• Taken for less than 1 month
• September 23, 2016

For Pseudotumor Cerebri "I have been taking this medicine for only two weeks after being diagnosed with pseudotumor cerebri, and it is awful. I feel like everything is getting worse. Before the medication, I already had the ringing in my ears, the terrible headaches, and occasionally I had numbness in my face, hands, and legs, along with many other symptoms. Now, since taking this medication, the ringing and headaches are EXACTLY the same, if not worse, and my feet are killing me, they are constantly 'asleep' with the feeling of tiny thumbtack jabs all over. It's multiple times a day: walking, standing, sitting, lying down. I feel worse now than I did before. I don't know what to do, but I know I cannot continue like this. I know that everyone reacts differently."

• Kay...
• Taken for less than 1 month
• September 23, 2016

For Pseudotumor Cerebri "I have been taking this medicine for only two weeks after being diagnosed with pseudotumor cerebri, and it is awful. I feel like everything is getting worse. Before the medication, I already had the ringing in my ears, the terrible headaches, and occasionally I had numbness in my face, hands, and legs, along with many other symptoms. Now, since taking this medication, the ringing and headaches are EXACTLY the same, if not worse, and my feet are killing me, they are constantly 'asleep' with the feeling of tiny thumbtack jabs all over. It's multiple times a day: walking, standing, sitting, lying down. I feel worse now than I did before. I don't know what to do, but I know I cannot continue like this. I know that everyone reacts differently."

• Mik...
• June 22, 2018

For Glaucoma "I took this medicine once, and the side effects are horrible. It decreases my potassium to the point that I felt the pressure on my head, and it feels like I was about to collapse. My whole body started to feel numb, and I was shaking and scared. (I was about to panic when I felt that numbness all over my body), but I stayed calm and rested, but I can still feel the tingling sensation. I pee a lot, dizziness, and I feel like it triggers my anxiety. But this medicine helped my eye pressure. I just took this once, and I will never take that again. Earlier, I went to my ophthalmologist, and he is kind of shocked that I said I was about to collapse, and he said that I shouldn't take that medicine because of the side effects. Right now, I can still feel the tingling in my fingers and foot. I just ate a banana, and it helps..."

• mrs...
• Taken for less than 1 month
• March 19, 2018

For Glaucoma "This is the third time taking acetazolamide. The main side effect for me is the eggy taste in my mouth, constant loose bowels, numbness in my hands, feet, and face, feeling cold, tired, and weak. I think I've tried almost every eye drop on the market, and pressures are still over 40. I'm on this medication for 2 months, four times a day. My operation is on 3/5/18, really hoping the side effects ease off soon, it's beginning to get me down."

• 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."

• 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."

• Ale...
• September 20, 2017

For Glaucoma "My eye pressure was up in the 40s, and Dr. gave me 1 pill only to help get it down. About 20 mins later, I started feeling numbness all over my legs, arms, nose, and upper lip. It was annoying, but not painful. I was needing to pee very often and was super low energy the rest of the day. Glad I only had to take the 1 pill. It only slightly helped the eye pressure issue."

• 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."