Acetazolamide for Pseudotumor Cerebri User Reviews (Page 4)

• Nawaf
• June 30, 2020

Diamox (acetazolamide) "I am 50 years old with a BMI of 28.9. I was suffering from a headache for 3 month. After taking diamox 250 I started to gradually feel better but after a month I started have high pressure headache which was worse than before."

• Marib...
• 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 I 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 excect 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"

• Andyc...
• 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"

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

"I take 750mg acetazolamide morning and night since 2016. I have ICP and when the fluid around my eyes, brain spinal cord is peaking the nerves in my eye was 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. Its 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 and just about over taking so many meds as the side effects drive me crazy."

• Britt...
• April 20, 2018

"I felt horrible for the first two weeks after being diagnosed with pseudotumor cerbri, and taking the medicine 1000mg a day. The tingling in my hands face and toes comes and goes. I have had no more headaches or pressure in my sinuses since the first few weeks of starting it."

• Madip
• Taken for 1 to 2 years
• January 16, 2017

"This medication saved my vision and made my headaches go away. I have the side effects of metallic taste with fizzy drinks and some sexual dysfunction but it doesn't effect my daily life. I take 250mg three times a day."

• JJano
• Taken for 1 to 2 years
• August 3, 2019

"Acetazolamide gave me breathing problems and fast heartbeat. I hyperventilate when I take it. Sometimes it would come right back up before it reached my stomach. I still had high pressure symptoms. I was very out of it all the time. I felt like I was dying on it. But I was so out of it I couldn't even communicate that. I was on it for a year the first time and a month the second and definitely the last time."

• The...
• Taken for 1 to 6 months
• July 27, 2020

"I started on acetazolamide for psuedotumor and was originally put on 1000mg a day, 500mg am and 500mg PM. I was getting really awful headaches so my dr took me down to 250mg in the am and 250mg in the PM for a week. After that week I went back up to 500mg in the am and 500mg in the pm. The side effect symptoms I have was 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. Its 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!"

• Rima
• Taken for less than 1 month
• August 10, 2021

"So I was supposed to start taking this medication months ago for IIH/ Intracranial Pressure/Pseudotumor Cerebri. I only just decided to take it recently and day 1 was okay until I started to have extreme blurred vision. I normally can see things without my glasses but after just 1 pill (500mg) hours later I've been having a hard time seeing and it is really worrying me. Not noticing any other side effects at the moment. I'm not sure if I want to continue. I hope this helps someone and will post again with further info."

• Jude
• Taken for 2 to 5 years
• February 9, 2020

"I was diagnosed with pesudotumor cerebri in 2017 and have been on this medication for over 2 years. Together with a healthy diet and exercise I've managed to loose about 20kg so have been slowly allowed to go off it. My papiledema has improved significantly to the point where it is unnoticeable and I'm currently "under observation". During my time on this medication I've experienced some tingling in my extremities, dry mouth and coughs, changes in the taste of certain foods and GI issues such as heartburn. I did have to get back on it after about two months off due to taking ADHD medications who elevated my ICP, but the GI issues were so severe that my neurologist prescribed me a different medication, since my ICP is now under control. This medication has some severe side effects, but it also works and in my case it helped save my eyesight and it's preferable to having a lumbar puncture every few months."

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

Diamox Sequels (acetazolamide) "I had cerebral Venus 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, eye site very blurry and the vomiting is non stop. Diamox Sequels by TEVA has worked the best. I highly recommend this. I have avoided a shunt this long because of Diamox."

• Anonymous
• Taken for less than 1 month
• April 29, 2015

"I was diagnosed back in 2011. I am 22 years old, about to start college and found out that I had psudotumor cerebri, it took the doctors 3 days and 2 nights to figure out what was wrong with me, I went on toprimate, diamox, and for the migraines I was also on Fioricet. I have been through many, many doctors. Moved down to KY with my family in 2013, been here for two years. I have learned to live with the pain and the headaches, I finally was able to find neurologist, and he put me on diamox. I have lost 8 IBS being on it already, tingling in the fingers, and around my lips. I no longer drink pop anymore at all, it works."

• Anonymous
• April 3, 2012

"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 (125mg) 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!"

• kdg
• Taken for less than 1 month
• July 18, 2016

"Finally diagnosed with Idiopathic Intracranial Hypertension without Papilledema after nearly 4 years of messing around with doctors who didn't believe anything was wrong, because my situation doesn't involve the optic disk swelling. Was started on Diamox 500mg a day...after 14 days severe stomach pain, I couldn't even drink water. Neurologist told me to stop taking it. The tingling, which is everywhere, turns to sheer pain if your out in the wind. By day 10 of taking the medicine, my lips started to purse on their own. My kids laughed because I had "duck face" for several days, even after stopping the med. Now I'm back on it, 125mg/day, same side effects. Sucks. Did not help my symptoms the first time, and hasn't yet."

• Bkcwjzy
• Taken for 2 to 5 years
• November 3, 2012

"I developed a pseudo tumor over the course of a weekend. My intracranial hypertension onset was so fast because it was brought on by taking an extended round of tetracycline for a persistent sinus infection. My dosage of Diamox had been 1000mg/day but it was flushing my antidepressant out of my system too fast so it was lowered to 500mg/day. The tingling went down, too. I still can't drink carbonated drinks, but that's better for my weight loss anyway. "

• Britt...
• September 17, 2021

"This medication is absolutely horrible, I’ve been on it for only a week and has 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 is 5’1, I don’t have glaucoma, or high blood pressure, never had a seizure, this medicine has altered my whole body and I can not 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"

• C Bar...
• March 19, 2017

"I'm 28 and I was diagnosed with Pseudotumor a little over two years now I've had a VP shunt an LP shunt and multiple lumbar punctures, I've been taking Acetazolmide and I've had no side effects so far... but I'm still having really bad headache's and swelling of my eyeballs, so yesterday my neurologist decided that instead of taking two pills in the morning and two pills at night, I'll start taking three pills in the morning and three pills at night. I just want to feel better!"

• Anna
• January 31, 2017

"When I first began diamox I felt hopefully as the previous medication didn't work (topamax). At first, I felt so much better,then my dosage was increased. Once my dosage was increased I started breaking out in hives (in upper body) turns out I am allergic to it. I'm currently on the lowest dose to hold me over until I can get a shunt."

• Sbano
• Taken for 6 months to 1 year
• July 26, 2021

Diamox (acetazolamide) "First of all I am happy for everyone that has benefit from this medication, for me I don't feel this medication has done anything for me. I started taking a small dose 250mg when I was diagnosed with IIH back in September of 2020, since my headaches have not gotten away, I am now up 1625mg per day. Yes I have lost 30lbs, the worst side effects for me are diarrhea, tingling in my feet, riming on my ears and all day thing, lack of energy and the headaches continue to be so massive that they debilitate me so bad, but I have to work like this, either work or be homeless. They also did a lumber puncture, which did a tear in my dora and they had to do an epidural blood patch and it took a month to recover. I was told that if this medication doesn't help and losing weight, then the next option is brain shunt, I am just so tired of taking this medication, which I don't see any benefit or help with my headaches which is what changed my life and then the constant blurred vision."

• Chico...
• Taken for 6 months to 1 year
• April 18, 2017

"I was 19 when I was sent from my small town & county to have tests done. I'd had symptoms from age 12 when I was put on birth control pills for PCOS. The Dr from San Francisco put me on Diamox and prednisone and ordered my family Dr do a spinal tap when I had eye problems or severe headaches (he did at least 3/wk for 2yrs). My family Dr took me off the prednisone after a few months and I gained over 100lbs. The Diamox caused me weird side effects. My face was all "tingling", everything I ate or drank tasted metallic (especially if it was fruit or carbonated). Eventually the tingling started down my neck, chest, and hands/arms. So my Dr took me off it, gave me hydroclorathazide (it maybe misspelt). I've learned Diamox causes it a lot."

• Julie
• Taken for 1 to 2 years
• October 18, 2023

"Took various doses of Azomid for idiopathic intracranial hypertension. Been on it over a year and it definitely helped reduce cerebral fluid pressure, and I've slowly gone down to lower doses, but I experienced severe side effects from 750mg-1000mg. My side effects on the different doses: - 500mg p/d - Tingling in hands and feet, increased urination, metallic taste, reduced libido, Runny stools (not quite diarrhea but about 70% there) - 750mg p/d - Tingling and metallic taste largely went away. Libido, however, became non-existent, intense loss of appetite (had to force myself to even drink water). Mild mood swings - 1000mg p/d - Libido completely gone. Intense mood swings (just overall strong negative feelings, anger, sadness, irritation) - I'm usually a very upbeat person, so this was very noticeable. Extreme loss of appetite. Mood swings and libido are getting better as I'm reducing dosage (back to 500mg)."

• Diamox
• Taken for 1 to 6 months
• November 17, 2023

"My side effects started immediately after the first dose. I literally felt like someone was putting thorns through my feet and knee joints - a mixture of tingling and pricking sensation. As I write this, it has been seven weeks into diamox and I do not have any tingling. This feeling has been subsiding over time. I have remained fatigued since I started taking the drugs. This coupled with dizziness and people interpret it as laziness. It is sad, but I am positive that it will also fade. The main concern right now is tremors! My fingers are almost as shaky as those of a patient with Parkinsonism, especially the thumb. My upper lip, eyes, and facial muscles are also almost always in a tremor. Unfortunately, my neurologist just says I will be fine. Tip: Take potassium-rich foods."

• crick...
• Taken for 1 to 6 months
• November 13, 2022

"I don’t see sparkles or have blind spots anymore. When I get headaches - they are no longer unbearable and make me miserable. I’m able to function. They’re like a “normal” small head pain now. I take 1000mg daily right now. I noticed a change the day I started this medication. Less pressure in my head and behind my eyes, & less painful headaches. This medication is different for everyone. My first side effect was severe heartburn. I mentioned this to my neurologist & they recommended an OTC heartburn med. So I take that also now. Some other side effects I have had are tingling lips, mouth, legs, and fingertips. Whenever I eat it feels like I have pop rocks in my mouth. Sometimes my knees feel tight and my feet tingle so bad it’s painful but it only lasts a minute or two. I’ve also had lack of appetite, fatigue, small hearing loss, brain fog & increase urination. The side effects are worth it for me. I can actually function at 85% now instead of 5%."

• jelema
• Taken for 1 to 6 months
• September 4, 2019

Diamox (acetazolamide) "Makes my feet tingle and I hear ringing in my ears all the time"

• Yo136...
• March 2, 2016

Diamox (acetazolamide) "Diamox didn't work and I hate it"