Acetazolamide and Headaches: What Users Say

• Jan...
• Taken for 1 to 6 months
• October 16, 2016

Acetazolamide for Pseudotumor Cerebri "This drug has not helped relieve pressure, headaches, or visual impairments in my case. My vision continues to go in and out without notice, waking up every day with a headache and continuing to have one well into the late evening before bedtime. The side effects are awful! I have lost 29 lbs in three weeks! I am unable to hold anything down, everything tastes nasty or like I'm eating pennies. Constant fatigue and restlessness. The prickling in the hands and toes, not to mention the constant nausea. Every case is different. It's not working for me but could for someone else. I cannot tell anyone to not take a drug or to take a drug for IIH. Because every case is different, everyone will see different results."

• mat...
• December 4, 2017

Acetazolamide for Pseudotumor Cerebri "I have been on Diamox since 2004 when I was first diagnosed with pseudotumor cerebri. I was hospitalized for 5 days after experiencing paralysis in my legs, severe headaches, nausea, and visual impairment. I have tried to stop taking the medication but had to return to it due to the severe headaches and cranial swelling. I have constant problems with electrolyte deficiencies and have to take additional medications to alleviate other problems. This is still the best treatment I have experienced. In addition to this condition, I also have lupus, HBP, hypothyroidism, and I am bipolar."

• Mon...
• Taken for 1 to 6 months
• February 12, 2020

Acetazolamide for Hydrocephalus "I had to take this medication due to having fluid around the brain. The doctors stated I had swelling behind my eyes, which caused headaches and loss of vision. This medicine was disgusting, to say the least. When I started this medicine, I was 177 lb, I weighed 155 by the time I finished the bottle. I had no appetite, no sex drive, dry mouth, and could only drink water or a juice I found that I liked and could actually taste! Soda tasted like metal. I took this medicine for 4 weeks. In August, I had shunt surgery! That was one of the best decisions of my life. My vision is a lot better, and I’m free to wear whatever I like! Hope you all get better soon! If you have other options other than taking this medicine, by all means, do so! You will be a lot happier and not miserable!!!!"

• 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."

• Anonymous
• February 6, 2012

Acetazolamide for Pseudotumor Cerebri "I have only been taking the medication for a week. 500 mg/day. I have lost 11 pounds in that week due to the loss of appetite. When I do eat, I get sick. Nothing tastes good to me anymore. I'm having some crazy dreams at night. I urinate every 2 hours minimum. I get a tingling feeling in my fingers, face, and legs. I'm having a spinal tap this Friday to relieve some pressure. I'm hoping after that happens I won't have to take this medication anymore. It has alleviated the headaches, though!"

• 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."

• mik...
• Taken for 10 years or more
• August 30, 2020

Acetazolamide for Mountain Sickness / Altitude Sickness "Diamox is freaking MAGIC. I used to get horrible, debilitating headaches at altitude in Breckenridge and Crested Butte. And if I had a beer, well, it was so much worse. I told my doctor, an avid skier, about it, and he prescribed Diamox/acetazolamide. Game changer. Not that I condone this, but I could hang with the 20-somethings in the bar 'til closing and wake in the AM feeling great and ready to go. Since then, I don't go about 8000 feet without following the protocol."

• nyg...
• Taken for 2 to 5 years
• November 26, 2015

Acetazolamide for Glaucoma "I have congenital glaucoma. This medication was prescribed to me in 2009, the worst medication I've ever had. Tingling of the toes, fingers at times, lips. Worst headache of my life, and it's related to Diamox according to my doctor. The headache becomes so bad I can't think straight. It doesn't lower eye pressure for me in its entirety, but to a certain degree. Also, accompanied with this medication, it falls down horribly on my stomach, unbelievable pain, as well as dizzy symptoms. Doctor stated to me that this medication does produce these side effects."

• Tor...
• Taken for 1 to 6 months
• January 6, 2020

For Pseudotumor Cerebri "This medication acetazolamide was horrific at first! I had to take off work a month just to take it. I started taking a dose of 125 mg a night for a week, then 125 x 2 a day for a week, then 250 x 2 a day for a week. Now I take 500 mg ER once a day. Next week I go to 500 mg ER 2 x a day. I was so sick I couldn’t get out of bed the first two weeks. Food and drinks still taste strange, still very sick just not as bad, but sadly trying to adjust as my new normal. Still tingling in hands/feet. Sharp headaches, nausea, breathing issues, tired, eyes look weak, dizzy, always in a haze. Eating anything seems to enhance my nausea. I had trouble walking one week and had to have an epidural steroid shot in my back. I have lived with ringing in both ears for over a year now. The medicine has made my ringing worse! I can’t stop the medicine. So I don’t have a choice. I have to take the medicine or risk going blind. However, I am pretty miserable!"

• Anonymous
• June 6, 2011

Acetazolamide for Pseudotumor Cerebri "This medicine helped me so much to relieve some of the pressure in my head and leveled the pressure in my eyes. I also have edema of the legs, and it gets so bad that at times I retain over 20 lbs of water, which slows me down terribly. The pills helped me greatly and kept me active. However, my doctor decided to take me off them and put me on Topamax because, though the pressures were down, the headaches and pain were still there. I have gained so much weight because I barely move at times and have not been as active as I once was. My legs and now my abdomen are filled with fluid. Wish I could get Diamox again!"

• Mar...
• March 2, 2014

Acetazolamide for Glaucoma "I am taking Diamox, this is the 3rd time I have been prescribed this. It definitely works, but the side effects this time are the worst of all. I am dizzy and fell, with pins and needles in my hands, feet, and face. A headache, I don't know if it's from the medication or from the fall. Nausea."

• 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."

• Anonymous
• April 28, 2010

Acetazolamide for Pseudotumor Cerebri "I was experiencing blurred vision, fatigue, loss of appetite, lack of concentration, and an increased amount of severe headaches. After being checked for everything under the sun in blood work, I was told I was fine. About a month later, the headaches and the memory and concentration issues came along with more asthma attacks. My neurologist sent me for an MRI, MRA, and EEG, nothing. He then sent me for a spinal tap, which revealed I had pressure in my head double the normal. This happened on Wednesday, April 21st, 2010 (last week). I received a phone call from my neurologist, who said I needed to start taking the medication immediately. I have had no appetite, consistent nausea, and I throw up on a regular basis. So I deal with it or have a shunt."

• Taj...
• Taken for less than 1 month
• May 28, 2019

Acetazolamide for Mountain Sickness / Altitude Sickness "Upon arrival in Lhasa, Tibet, at approx 3000 MAS (meters above sea level), I started getting a very bad headache. Approx 8 hrs later, the headache had progressed to extreme throbbing. I drank plenty of water and took Diamox as prescribed by my G.P. for altitude sickness. The next day, I signed myself up on a tour to travel to Nam Tso at approx 5000 MAS."

• Taj...
• Taken for less than 1 month
• May 28, 2019

Acetazolamide for Mountain Sickness / Altitude Sickness "Upon arrival in Lhasa, Tibet, at approx 3000 MAS (meters above sea level), I started getting a very bad headache. Approx 8 hrs later, the headache had progressed to extreme throbbing. I drank plenty of water and took Diamox as prescribed by my G.P. for altitude sickness. The next day, I signed myself up on a tour to travel to Nam Tso at approx 5000 MAS."

• Igg...
• September 2, 2020

For Pseudotumor Cerebri "Acetazolamide is fantastic for pseudotumor cerebri! Fast relief from the cacophony of noises in my head. That headache I thought I didn't have because I was so used to it went away. What I thought was sciatica that never let up disappeared, and my neck and shoulders felt like they got a massage. I had to get a spinal tap first, and that's when the noise let up. It took a few days for the other things to go, but what a blessing! I felt the horrible side effects as I was leaving the hospital, but I knew what to do. Research. A few notes in case you need help with the side effects of acetazolamide: most medications take something from you in return for what they do. In this case, it's folate. I strongly suggest any time you take this or any kind of psychotropic medication, take a good quality B Complex vitamin. This one also takes electrolytes. Emergen-C is a good way to help that. And drink a lot of water! I'm still losing weight, and it's not all water anymore. Embrace the side effects that can help. Strong 10 out of 10 for acetazolamide!"

• NO1...
• February 5, 2018

For Pseudotumor Cerebri "I have been on Diamox for 3 weeks. I continue to have severe headaches, still the same pressure on my eyes and head. I cannot stay awake taking this medicine. I get up and try to sit on the couch, and within 5 minutes I’m out. I see a neurosurgeon in 3 days, and I hope he can help me. I can’t even walk properly because my balance is so off. My wife is typing this as I speak."

• 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."

• 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!"

• tar...
• Taken for 10 years or more
• July 6, 2022

Acetazolamide for Pseudotumor Cerebri "I had cerebral venous sinus thrombosis and also have pressure from excessive fluid in the head. I have been taking Diamox Sequels extended release for over 20 years now. Nothing else works. 250 mg times 2 won't work. Only the extended release Diamox 500 mg. When I don't take it, I have horrible headaches and pressure, eyesight very blurry, and the vomiting is nonstop. Diamox Sequels by TEVA has worked the best. I highly recommend this. I have avoided a shunt this long because of Diamox."

• Cat...
• Taken for less than 1 month
• July 3, 2019

Acetazolamide for Mountain Sickness / Altitude Sickness "I took one of these pills (125 mg) to try it before my vacation, and I haven't felt so sick in a long time. OMG, it was horrible!! It started with mild dizziness and tiredness. Not so bad, but by the 12th hour, I just wanted to check out. A lot of dizziness, very tired but couldn't sleep, nausea, and headache. Generally, I felt awful but couldn't put my finger on how else it made me feel this awfulness. I took a meclizine and some Advil and felt a bit better. The next day, I still felt a bit weird but not so awful. That stuff lasts a long time, and if you take it on vacation and have my reaction, you'll waste a lot of hours being miserable."

• Anonymous
• April 3, 2012

For Pseudotumor Cerebri "My daughter (6) was diagnosed with pseudotumor cerebri one month ago. She had a spinal tap done to relieve the pressure and was put on a very low dose of the medicine (125 mg) twice a day. All seemed well for the first two weeks, and now we are back to the beginning with headaches, swelling of the face, blurred vision, and unusual tiredness. She saw a neurologist yesterday who doubled her dose. Needless to say-today she was so tired that she took 2 naps! THIS NEVER HAPPENS! I am worried that these are all side effects of the medicine now. As much as I don't want her to undergo surgery for a shunt, I would rather that than have her not be able to function because of these symptoms!"

• 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."

• Cra...
• October 12, 2015

For Pseudotumor Cerebri "Without the medication, I have major headaches, sinus headaches, one eye will begin to bulge, and my head will feel like a balloon. With the medication, I'm good."