Acetazolamide for Pseudotumor Cerebri User Reviews (Page 3)

• tir...
• February 19, 2017

"I just started acetazolamide a few days ago. 500 mg 2x a day. I had a lumbar puncture 2 days ago and neither has relieved much of the pressure. Every time I take one of these pills, I get a new symptom. My kidney function has been weaker. The pressure in my head continues. My body aches all over. The yucky taste... that is the least of my worries. Pins and needles... check. Extremely tired and feel like I've been beaten. I feel like bricks are laying inside my hips. This stuff sucks!!"

• bas...
• Taken for 1 to 6 months
• October 5, 2018

"This medicine helped my migraines stop, but it caused me an insane amount of fatigue when I started it and when I stopped it. My hands, legs, feet, and sometimes other body parts tingled nonstop. Sometimes the tingle was so strong, it actually hurt. My hands tingled so much that I couldn’t write, so I had to use my computer to take notes instead. The one good thing from this medicine was the horrible migraines I’ve been suffering through never once occurred."

• Pen...
• Taken for 10 years or more
• July 3, 2015

"I've been on and off this medicine since 2006, I was told I'd be able to stop, but it has not happened. It helps so much with the IH even with the tingling and taste issue side effects, I don't know what I'd do without it. I've had two spinal taps, and I really do not enjoy that experience."

• CHE...
• December 22, 2013

"I was diagnosed on a Wednesday, and by Thursday, I had started taking this medication. It did not kick in until the third day when I finally woke up without a headache. However, after one day of the pill, I have seen its side effects. All beverages with carbonation are now out of the question, they taste horrible. Pepsi tasted like soapy dishwater with a hint of bleach, and I noticed the tingling in my lips. The tingling in my lips and legs, however, does not bother me. I just find that my legs fall asleep faster if I'm not moving them. When my lips tingle, it kind of makes me laugh, it won't freak you out. Hoping that by the end of the week, the headaches are completely gone!"

• Thu...
• February 27, 2016

"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."

• ohi...
• Taken for 1 to 6 months
• December 27, 2024

Acetazolamide "Migraine sufferer of 5 years, labeled chronic. Finally got my neurologist to send for MRI, MRA, and LP. Opening pressure was 24 during LP, closed at 19. Started Diamox and built up to 1000 mg daily. 500 mg in the am and 500 in the pm. Symptoms include tingling in feet more than hands, metallic taste lasted the first two weeks. I'm not a huge soda drinker but will have a Coke or Sprite. No issues until I had a Dr. Pepper, tasted like pennies. Yuck! Headache days have decreased from about 20 per month to 2 or 3. Last a couple of hours, then no issues but worse around my cycle. I've also stopped all other medications such as Tylenol, Excedrin, Aleve. My vision has improved as well and not so blurry in the morning. I do still have ringing in the ears occasionally and pulsating in my head, but I give it an A- overall from where I started 2 months ago."

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

"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

"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."

• Bab...
• Taken for 1 to 6 months
• August 1, 2019

"I was diagnosed with pseudotumor cerebri two months ago, and I have been on Diamox for about six weeks. So far, I have a love-hate relationship with this drug. It got rid of my “snow” almost immediately, but the flashing lights and blurriness are still there. Any improvement is great in my opinion. The problem is with the side effects. I have gotten used to the weird food and beverage tastes, and the tingling in my hands and feet is annoying but bearable. I have completely lost my energy. I am tired all the time, and it is very difficult to find the motivation to get through work and do what I need to get done. I feel like garbage a few days a week. I’m really struggling, but I am going to try to learn to deal with it."

• Anonymous
• April 28, 2010

Acetazolamide "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."

• Est...
• Taken for 6 months to 1 year
• December 18, 2017

"All I have to say is that this pill has made my life so much better. Three years ago, this pseudotumor cerebri started after having my firstborn. I was at my heaviest at 245 lb. Ever since, I've never been the same until now. Although I deal with the side effects (sleepy, muscle weakness, tiredness, tingling), being sleepy has been the worst to cope with because I'm a mother and I have things to do, BUT at least some days I'm able to function well, and that's better than nothing. I also take potassium, which helps a lot for the tingling! I hope one day I no longer have to take these pills and finally have my life back and enjoy it! BTW, I'm 21 years old."

• Dan...
• Taken for 1 to 6 months
• August 19, 2016

"I absolutely depend on this medication. I am 22 years old and was diagnosed with Pseudotumor Cerebri mid-April of 2016 and was severely sick... had an MRA, MRI, and a spinal tap done. I do not wish this illness on anyone. I'm stuck with this for the rest of my life. This medicine has helped a lot, so I will continue taking it. I do not have any negative side effects. I take 1500 mg."

• Nur...
• January 25, 2014

"I was diagnosed with pseudotumor cerebri almost two years ago now, and I've had a spinal tap done after a year of crippling, painful headaches, blurred vision, bright red inflamed eyes, and dizziness. The spinal tap, unfortunately, went wrong, and I had a spinal leakage from the high intracranial pressure, with an absolutely horrible spinal headache, so I had to have a blood patch, then put on acetazolamide. With the painful tingling sensations on my face, arms, and feet, I couldn't sleep, and I pee all night. I take 1500 mg of it, 3 pills a day, and although it's helped clear my eyes, my headaches, and the wind tunnel noise in my ears from the fluid is still very loud. I'm totally off balance, and I have forgetfulness all the time, not to mention I'm always tired."

• Jam...
• Taken for 2 to 5 years
• January 27, 2019

"My doctors had me taking 1500 mg 2x a day, my headaches went away. I had problems getting the medication, so I started taking 1000 mg 2x a day, and I was doing well. If I didn’t take any at all, I would be able to go 2-3 days before getting a headache. I went about 6 months with no medication and no headaches before they started up again. I was able to get a hold of the medication, but I’m having trouble getting refills. I’ve been taking 2 pills every night, and it works, but I can feel them slowly coming back. I’ve been taking these pills for almost 4 years now, and I’ve tried everything to take care of it. I’ve lost weight, taken headache OTC pills, coffee helps but not to get rid of them—please, if anyone knows of an alternative to the medication that can help—willing to try anything at this point, TBH."

• LMO...
• May 11, 2015

"I have been using Diamox off and on since 2009 for pseudotumor cerebri. With the correct dosage, I was able to reasonably maintain my headaches. The most common side effects I have are tingling in hands, face, and feet, and dry mouth. These are tolerable side effects compared to pain off of the medication."

• Cri...
• July 28, 2010

"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."

• ama...
• Taken for 1 to 6 months
• June 23, 2017

"My experience with acetazolamide has been okay. I started taking it after my lumbar puncture to relieve the pressure. (I got IIH because it was a rare side effect of an antibiotic I was on for my acne, minocycline.) It has been VERY effective at relieving the pressure, but gives really annoying side effects, like tingling of my fingers, face, and toes. Like when I'm trying to sleep, my feet tingle and go crazy, and it makes it impossible to sleep. It also made me have little to no appetite, and I have lost 20 pounds in about 2 months. My neurologist told me that long-term use of this medication can cause kidney damage, but 6 months to a year shouldn't be a worry. (I am only going to be on Diamox for 6 months. I've been on it for 4 months.)"

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

"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."

• LPa...
• Taken for less than 1 month
• September 1, 2019

"This is by far the worst medication I have ever been on. I’m a week into taking the medication now, and I’m struggling to sleep due to the pins and needles in my face and eyes. It’s just constant. I also suffer from panic disorder, and my anxiety has been sky-high since starting these tablets. I recommend to anyone that if you begin these tablets, then ask your GP for some propranolol to go with them."

• Per...
• Taken for less than 1 month
• July 6, 2018

"I was diagnosed in 2013. I was told I have pressure headaches, and I thought no big deal. I stopped going to my neuro doctor, and he failed to give me the actual diagnosis or even tell me how serious my diagnosis is. I only learned I have IIH in 2018 when I requested my medical records due to a worsening of my headaches, pulsating tinnitus, dizziness, visual disturbance, eye pain, pressure, horrific headaches, and feeling like I will live with a migraine-like headache every day of my life. I don't know about anyone else, but when you start to think trepanation (making a hole in your head) could be a good thing, you know it is bad. I am now taking acetazolamide again. Day 2: change in taste buds, carbonated drinks taste awful, cheese is terrible... tingling in lips, face, and hands. Moderate stomach pain. Feelings of lethargy, decreased appetite, generally feel unwell. My doctor advised some or all will go away."

• Igg...
• September 2, 2020

"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!"

• And...
• January 6, 2019

"I was taking this 3x a day, and it helped my ICP that began after brain surgery, but it slowly began to make me severely depressed, and I didn’t realize that was the problem until I ran out and went 2 days without it, and my mood improved drastically. Not sure what to do now. Will see Dr. in 2 days."

• NO1...
• February 5, 2018

"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."

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

"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."

• Gee...
• Taken for 2 to 5 years
• October 20, 2019

"I take 750 mg acetazolamide morning and night since 2016. I have ICP, and when the fluid around my eyes, brain, and spinal cord is peaking, the nerves in my eye were damaged, and my left side would not work. I could not lift my foot or walk, my left arm was weak, and my head felt like it was going to explode. It's now October 2019, and I can walk, talk, and process my thoughts and voice. I am working 45 hours a week and driving. So the short answer is YES, my meds are working, but I am just about over taking so many meds as the side effects drive me crazy."