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User Reviews for Acetazolamide to treat Hydrocephalus

Also known as: Diamox, Diamox Sequels

Acetazolamide has an average rating of 5.1 out of 10 from a total of 10 ratings for the treatment of Hydrocephalus. 20% of users who reviewed this medication reported a positive effect, while 40% reported a negative effect.

Acetazolamide Rating Summary

5.1/10 average rating

10 ratings from 7 user reviews.

Compare all 3 medications used in the treatment of Hydrocephalus.

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10%
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10%
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0%
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20%
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20%
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30%
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Tyler · Taken for 2 to 5 years May 13, 2021

“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, seems better than another brain surgery or a shunt that could break or get infected.”

7 / 10
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Coyboy19 · Taken for 5 to 10 years March 20, 2021

Diamox (acetazolamide): “At first I was diagnosed with idiopathic intracranial hypotension (IIH) by some Neuro. But I was on mega doses at that time. Lost all muscles and any weight that I had. I was 24. Weighed in 190 male 6 foot 1. So good build and a good weight. Not no fat like they say that it always causes or vi versa . Or etc. Never had a seizure until that med. I had other problems when 16 years old etc. But was a lot better from 18 on up. But the only reason to go was a headache, it was crippling headache that kept me in the bed almost all the time and I seen neuro surgeon. Went from IIH to constructed hydrocephalus. To the next shunt I lost 5 to ten years I don't remember at all. Went crossed eyed. With just one eye. When I was 24-27. Had 20-20. That happen. I couldn't see anything. Everything was seeing 2 or 3 of something. Went on for a year. Ok. I'm done. Have had 7 or 8 surgeries in 4 years etc. Not counting eye.”

4 / 10
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Tara June 28, 2020

“I have been taking This since 2002 which is 28 years, I have never had luck with generics. Every generic I have taken doesn’t take all the pressure out of my head. There is only one generic that has worked for me and that is By Zydus Pharmaceuticals. Now there are two other generics besides this one that do absolutely nothing for the fluid pain my head. But this particular one works like half way. I will feel somewhat okay for about an hour a day and then late at nite I might get another hour where my head feels good. From what I have read my understanding is these companies who are making the generics are using different inactive ingredients which make my body not absorb medication as fast as the fluid is filling. I haven’t worked in almost a year. I’m always sick. I’m tired of it! Generics should be exactly like the brand! When I used to take TEVA Diamox I never had any issues. My life was fine I was working and living. Now I’m on generic living a terrible quality of life !”

3 / 10
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Monik · Taken for 1 to 6 months February 12, 2020

Diamox (acetazolamide): “I had to take this medication due to me having fluid around the brain. The doctors stated I had swelling behind my eyes which caused headaches and lost of vision. This medicine was disgusted the least to say. 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 moth 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 another options other than taking this medicine by all means do so! You will be a lot happier and not miserable!!!!”

3 / 10
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Nat Mel · Taken for less than 1 month August 27, 2019

“I’m on my 5th day of this acetazolamide tablet now. for Intercranial Hypertension I made an appt at the opticians as I had been suffered with disturbed vision and dizziness for around a year. I went to the opticians where they found my optical nerves were inflamed. Went to the hospital had CT and MRI scans which were normal. Had a lumbar puncture which revealed excess fluid on my spine so they drained some out. For anyone who says that spinal taps aren’t painful, they’re lying. It was horrible. They then put me on these tablets to prevent the fluid from reproducing. Blurred vision and dizziness seems to be my main symptom along with tingling fingers and toes. I am determined to stick this out though as I have read great things about it.”

4 / 10
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Jill · Taken for less than 1 month May 31, 2019

“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)]”

1 / 10
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ThunderClap · Taken for 1 to 6 months December 6, 2018

“I have Rebound Intracranial Hypertension (from Hypotension) .I was originally diagnosed with idiopathic intracranial HYPOtension (leaking spinal fluid), so I couldn't stand upright without my brain feeling like it was getting crushed. Got a blood patch, was fixed for awhile, but now I'm one of the rare cases of now having too much spinal fluid, so my brain feels like its going to explode. I could've risked either a spinal tap (and possible lead back to the original hypotension) or go on Acetazolamide to reduce the amount of fluids in my body and my head. Typical side effects everyone mentions here - soda tastes like garbage, and I get tingling hands/feet. I'm on one tablet of 250mg per day, and it's been able to stop the exploding headaches. I've been warned to see an optometrist to make sure the pressure isn't enough to cause optical nerve damage, but other than that, this is a working solution for me. Hoping to eventually ween myself off it.”

10 / 10
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BlessedMomof4 February 13, 2018

“I am currently on this medication 500mg 2x's 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 min 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 once a day for 2 weeks to let my body adjust then back to 2x's. 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 affects 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”

3 / 10
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Klabugg August 30, 2015

“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 500mg twice a day and gonna take vitamin c to help with tingling.”

9 / 10
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Moldy · Taken for 1 to 6 months June 28, 2018

“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 wasn't diagnosed until age 34. I have scoliosis, chronic pain, and chronic migraines all caused by the Chiari.) Was put on 125mg 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 meds side effect it'd be pretty worrying. Still, more pros than cons for me.”

7 / 10
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This information is NOT intended to endorse any particular medication. While these reviews might be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare practitioners.

Learn more about Hydrocephalus

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Symptoms and treatments

Mayo Clinic Reference