Acetazolamide for Pseudotumor Cerebri User Reviews (Page 4)

• Bri...
• April 20, 2018

"I felt horrible for the first two weeks after being diagnosed with pseudotumor cerebri and taking the medicine 1000 mg 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."

• Cal...
• Taken for less than 1 month
• September 10, 2016

"I was just diagnosed with Pseudotumor Cerebri after 3 years of medical issues. Started losing my eyesight, and then they found a blood clot in the main artery of my brain. Once the blood clot was treated, I still had fluid behind my eyes, headaches, foggy brain, and no energy. The Diamox has helped the foggy brain. The side effects weren't bad, I had tingling for a few days, a metallic taste, and drowsiness. The drowsiness is the worst part because several other medicines I take cause drowsiness also. I did have pain in my joints for the first two days, but it went away. I have lost 8 lbs since starting it. I will find out at the end of the month if the fluid buildup behind my eyes is gone."

• Rob...
• August 21, 2015

"I absolutely hate it. Every time I take it, I can't eat anything or drink anything with caffeine. It tastes like copper or way off. After taking the medicine for 7 months straight, I was in so much pain I couldn't walk, I felt weak and sick. I took myself off, and I felt great. But my eyesight hadn't changed. I developed carpal tunnel on this medicine. This is what that tingling sensation is. Get it checked. Remind y'all I'm only 27 years old. I shouldn't have all this. I recently started taking it again, and it's all the same symptoms again."

• Ano...
• Taken for 1 to 6 months
• December 11, 2016

"I am almost 20 years old and was diagnosed about 3.5-4 weeks ago. I got a lumbar puncture and then started Diamox, and it has been an awful experience. The first week and a half, I was severely exhausted, had nausea, and the taste issue, and basically wasn't functional. Then, for about a week or so, I seemed to be getting better until a few days ago when I've been very rapidly getting new symptoms/side effects like severe joint pain, itchy scalp, and waking up with my eyelids swollen half shut, and then this morning my lips were extremely swollen. I had to go to the ER to make sure it wasn't an allergic reaction, but it seems to be just a weird reaction to the meds (not allergic). I hate it. If I didn't have to take it, I wouldn't."

• Naw...
• June 30, 2020

Acetazolamide "I am 50 years old with a BMI of 28.9. I was suffering from a headache for 3 months. After taking Diamox 250, I started to gradually feel better, but after a month, I started having a high-pressure headache, which was worse than before."

• Rim...
• 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 (500 mg) 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."

• 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 pseudotumor cerebri. It took the doctors 3 days and 2 nights to figure out what was wrong with me. I went on topiramate, 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 a neurologist, and he put me on Diamox. I have lost 8 lbs being on it already, tingling in the fingers, and around my lips. I no longer drink pop anymore at all, it works."

• Mad...
• 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 affect my daily life. I take 250 mg three times a day."

• 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 500 mg 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 you're 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, 125 mg/day, same side effects. Sucks. Did not help my symptoms the first time, and hasn't yet."

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

"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 "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."

• Bkc...
• Taken for 2 to 5 years
• November 3, 2012

"I developed a pseudotumor 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 1000 mg/day, but it was flushing my antidepressant out of my system too fast, so it was lowered to 500 mg/day. The tingling went down, too. I still can't drink carbonated drinks, but that's better for my weight loss anyway."

• Jud...
• Taken for 2 to 5 years
• February 9, 2020

"I was diagnosed with pseudotumor cerebri in 2017 and have been on this medication for over 2 years. Together with a healthy diet and exercise, I've managed to lose about 20 kg, so I have been slowly allowed to go off it. My papilledema 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, which 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."

• JJa...
• Taken for 1 to 2 years
• August 3, 2019

"Acetazolamide gave me breathing problems and a 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."

• C B...
• March 19, 2017

"I'm 28, and I was diagnosed with pseudotumor a little over two years ago. I've had a VP shunt, an LP shunt, and multiple lumbar punctures. I've been taking acetazolamide, and I've had no side effects so far, but I'm still having really bad headaches 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!"

• Ann...
• January 31, 2017

"When I first began Diamox, I felt hopeful, 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 my 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."

• 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 (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!"

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

"I was 19 when I was sent from my small town and county to have tests done. I'd had symptoms from age 12 when I was put on birth control pills for PCOS. The doctor from San Francisco put me on Diamox and prednisone and ordered my family doctor to do a spinal tap when I had eye problems or severe headaches (he did at least three per week for two years). My family doctor took me off the prednisone after a few months, and I gained over 100 lbs. 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 doctor took me off it and gave me hydrochlorothiazide (it may be misspelled). I've learned Diamox causes it a lot."

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

Acetazolamide "First of all, I am happy for everyone that has benefited from this medication. For me, I don't feel this medication has done anything for me. I started taking a small dose, 250 mg, when I was diagnosed with IIH back in September of 2020. Since then, my headaches have not gone away, I am now up to 1625 mg per day. Yes, I have lost 30 lbs. The worst side effects for me are diarrhea, tingling in my feet, ringing in my ears, and all-day fatigue. The lack of energy and the headaches continue to be so massive that they debilitate me so badly, but I have to work like this, either work or be homeless. They also did a lumbar puncture, which caused a tear in my dura, 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 a 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."

• Jul...
• 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)."

• Bri...
• September 17, 2021

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

• Dia...
• 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 couples with dizziness, and people interpret it as laziness. It is sad, but I am positive that it will also fade. Main concern right now: 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."

• cri...
• 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 1000 mg daily right now. I noticed a change the day I started this medication. Less pressure in my head and behind my eyes, and less painful headaches. This medication is different for everyone. My first side effect was severe heartburn. I mentioned this to my neurologist, and 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, and increased urination. The side effects are worth it for me. I can actually function at 85% now instead of 5%."

• Uni...
• Taken for less than 1 month
• May 10, 2022

Acetazolamide "So I was started with 250 mg twice a day with Diamox, and I absolutely could not tolerate this medication. I even went down to 125 mg twice a day, still couldn't do it. To me, this medication is awful, the side effects are horrendous, and please do not believe the doctors that this is just a diuretic. Diamox breaks down your CFS, and I'm just not comfortable with taking a medicine that does that. It caused intense nausea, vomiting, anxiety, depleted my electrolytes, which is very dangerous, and gave me kidney infections, and I was only on it for 2 weeks. It can also cause kidney stones and failure... so that's awesome. Please, please look into this medication before taking it. I've gone with more alternative methods like acupuncture and lymphatic massage and had much better results and no nasty side effects."

• jel...
• Taken for 1 to 6 months
• September 4, 2019

Acetazolamide "Makes my feet tingle, and I hear ringing in my ears all the time."