Diamox and Headaches: What Users Say

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

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

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

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

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

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!"

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

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

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."

• Anonymous
• June 6, 2011

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

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."

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

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

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."

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

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."