Acetazolamide for Pseudotumor Cerebri User Reviews

• exw...
• Taken for 10 years or more
• January 22, 2013

Diamox (acetazolamide) "I have been on Diamox for many years. Started out with tunnel vision and then found to have pseudotumor cerebri (which my mom has too). I have even had lumbar punctures to drain the fluid off my brain as well in the beginning. This medication has worked wonders. I did have tingling and numbness in my feet, finger, nose, lips but that eased off by taking Vitamin C or eating oranges (this was recommended by my doctor and it works). Now the tingling and numbness are gone. I don't know what I would have done without this medication. Now all I do is take the medicine once a day and move on with my life. Please hang in there and don't get discouraged."

• Sar...
• Taken for 6 months to 1 year
• October 2, 2018

Diamox (acetazolamide) "I had pseudotumor cerebri and papilledema (an eye condition that happens when pressure in your brain makes your optic nerve swell). I was blind for 14 days. After taking Diamox, I slowly regained my vision. I also had gastric bypass surgery. This helped me reduce my weight and relieve pressure. I am now cured."

• Lew...
• May 2, 2014

Diamox (acetazolamide) "I was diagnosed with idiopathic intracranial hypertension in the early summer of 2013. I was put on 1000mg of Diamox at the beginning of November 2013 to keep the fluids from damaging more of my vision through swelling of my optic nerves. Felt the side effects within the first hour. Tingling in my hands and feet, some days my face. There were even days when my eyes and lips would twitch. All carbonated drinks taste like drinking battery acid. The first few weeks sucked, but it gets better with time. I just saw my eye specialist yesterday, 6 months of being on the miracle medicine, and the Diamox (and shedding a few pounds) has done its job and not a trace of swelling! I'm able to come off it in a few short weeks. Thank God for good doctors!"

• tir...
• Taken for less than 1 month
• January 14, 2020

Diamox (acetazolamide) "I have been on the medication for about 3 weeks, taking 1 pill - 125 mg every night. It did not help, I still had episodes. Last week I started taking 2 pills (one in the a.m. and one in the p.m.). While it seems to be holding off the episodes so far, I feel awful. My ears were already ringing, and this has just turned it up. I have nausea and a general feeling of 'I just don't feel well.' I experience weakness and fatigue. It feels like I'm breathing in air but getting no oxygen, like I'm getting no benefit from it (does that make sense?). I slept for about 8.5-9 hours last night and still woke up completely exhausted."

• Say...
• July 1, 2015

"Very good. Headache has gone, feeling much less foggy and dizzy. Everything's going well. It's only been two days, and I'll review in a month or two. I just want everyone who's scared of taking it because of the horror stories to realise it's not bad. I've had slight tingling, but it's just like pins and needles. I've lost 4lb (which I'm assuming is water). When my doctor prescribed it, he said that the people that stop taking it are those that misinterpret the symptoms as dangerous. This is a mild diuretic, and as such is very safe for most people. The tingling is normal - apparently Vit C can help, and I've taken one this morning and had no tingling. If you're thinking of taking it, try not to google reviews - most people with positive experiences don't comment, they just get on with their lives. I've vowed to come back to every IIH thread I can find and discuss my recovery to show that there are positive stories. My doctor says he gets a new diagnosis of this every week. It's not as rare as 1/2:100000. He sees it every week and he sees many people recover promptly. Yes, it's horrible. Yes, the symptoms feel like they'll last forever (especially if you google, because all you see are the worst-case scenarios. The ones who are over it just get on with their lives, though I wish more would come back and tell us!), but for most people, life becomes liveable again. I've had it 3 years now, diagnosed for 1 year, and on meds for 2 days, and I can feel a massive improvement."

• Mnm...
• Taken for 1 to 6 months
• December 15, 2020

"I am taking acetazolamide 500 mg twice daily for pseudotumor cerebri. I had to have a lumbar puncture to relieve the pressure. My neurologist says that I need to plan to take this medication for at least 2 years. You can’t drink soda when you’re on this medication. It tastes like acid burning your tongue and throat if you try to drink it. When I first started this, I had terrible tingling in my face, lips, and the top of my head. Now it is rare for me to experience this. I experience tingly fingers multiple times daily. I have tingling and uncomfortable feet at least once or twice daily. It’s not necessarily numb - it’s an uncomfortable pins and needles feeling. No one else has stated this, but I feel like I have to urinate all of the time, but when I pee, it feels like I can’t go all of the way, like I’m unable to empty my bladder. Overall, the medication does what it is supposed to, and the fluid and pressure have decreased dramatically in just 5 months. I hate the side effects, however."

• Akc...
• Taken for less than 1 month
• January 3, 2016

Diamox (acetazolamide) "Day 21, I had completely lost my eyesight, imagine that. Losing 20/10 vision at 25 years old. I was diagnosed with Chiari Type 1 malformation and intracranial hypertension. 100mg of prednisone a day, 1500 mg of Diamox a day. The side effects, I get a little tingle in my feet for a minute maybe 4 times a day, carbon drinks taste weird. I don't drink soda, but due to food poisoning on New Year's, I didn't have too much of a choice. The Diamox dropped my pressure in both eyes to 5, which is low. But I am regaining vision, no peripheral vision yet, but I am blessed to have something. Sitting in a room for weeks of blackness and opening Christmas gifts in front of your family with no sight, I appreciate my family life so much more. Truly blessed for my family."

• Kaf...
• Taken for 1 to 6 months
• October 13, 2020

Diamox (acetazolamide) "I got meningitis, and thankfully I healed. I told my doctors several times my vision is not good, I cannot see very well. I have double vision. But I didn’t have any chance to see an eye doctor in the hospital. I was discharged from the hospital with my vision problem. So I decided to go to an eye doctor. The eye doctor saw that papilledema at the back of my eye, and it was scary because he told me this is an emergency, you could be blind. I was just scared. He was a great doctor, he told me they will probably give you Diamox, if it wouldn’t work, they would put in a shunt. I went to the hospital, and they told me the same thing. They started giving me Diamox, 500 mg in the morning and 500 mg at night, 2 doses a day. I used it for 5 months, and it worked. I was cured, thanks God. But I lost weight also for helping this situation. I lost 20 kg in 5 months. I was 100 kgs, now I am 80 kgs. Definitely respect this medicine, take your medicine on time. Don’t use alcohol. Stay healthy. God bless you all."

• Aub...
• December 19, 2017

Diamox (acetazolamide) "I am 18 years old, and I was diagnosed with pseudotumor cerebri after an allergic reaction to long-term use of tetracyclines for acne. I went to the ER twice, experiencing persistent, debilitating migraines, double vision, and one eye turned to face inward towards my nose, and they were unable to relieve any of it. My eye doctor, after a month of different testing, diagnosed me with pseudotumor cerebri, and a neurologist started me on Diamox, and within two weeks, my eye turned straight again, and the headaches and double vision were gone. I experienced the common tingling in my hands and feet, difficulty drinking carbonated beverages, small rashes, and lethargy from Diamox, but it was all bearable after a week, and within a month, I am fixed."

• Omi...
• July 13, 2015

Diamox (acetazolamide) "I was just diagnosed with IIH/PTC last week. My neuro started me on Diamox the same day. Although I have had tingling in my hands and feet, as well as lethargy, the pressure behind my eyes has already started to go down. My ophthalmologist was very pleased today with the optic nerve scan and said there has been a decrease of pressure in both eyes. A little tingle here or there and a bit of sleepiness is worth saving my vision! So far, I'm a happy girl!"

• Anonymous
• Taken for less than 1 month
• August 22, 2012

Diamox (acetazolamide) "Can I just say for the people that are stating they have tingling/numbness with this medicine. I experienced this over a year and a half ago when I was first put on Diamox, they took me off it and put me on Topamax instead. For a year and a bit, I was on Topamax and lost 30kg but the headaches never completely went away. Now I have been put back on Diamox for almost the last two weeks and I find only sometimes will I get any tingling at all... whereas last year when I first tried it I couldn't stand it. What I find works for me is taking the tablet while I'm eating, keeping my fluid up (only water), soft drinks and 'bad' foods do tend to make it worse so I try to stay away from these. I find Diamox really does work if you're prepared to go that extra mile!"

• jen...
• November 3, 2010

Diamox (acetazolamide) "I have been on this medicine for approximately 4 months. The benefits that I have had with my vision and headaches have been wonderful. The things I am not sure about and cannot find much about is that I have a great deal of memory loss. I have searched this on several sites and I cannot find anything about it, so I am not sure if it is a side effect or if it is happening to me for some other reason. I have had some confusion since I have started it, and that is starting to concern me. The only alternative to this medication is to have a shunt put in, and I am not sure I am ready for that. I don't like the fact that I cannot have carbonated beverages, but I am sure that it is a good thing as I was a soda addict."

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

Diamox (acetazolamide) "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."

• Cat...
• Taken for 1 to 6 months
• February 11, 2017

Diamox (acetazolamide) "Diamox changed my life. I had 24/7 pressure headache for 7 years of my life. I went everywhere, even to the Mayo Clinic, and had test after test and scan after scan, and finally, my local neurologist tried this medication, and it has made me able to live again for the first time in 7 years! I was diagnosed with chronic daily headache and told I would never get better, but to everyone suffering, there is hope. Don't believe what a few doctors say, keep searching for answers. Try this medication if nothing else has worked for you!"

• mat...
• December 4, 2017

Diamox (acetazolamide) "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."

• Anonymous
• July 9, 2010

Diamox (acetazolamide) "I had swelling around my optic nerves causing vision problems and also had debilitating headaches that got worse with movement and made it impossible to exercise. I lived with it for years unknowingly and got progressively worse. My doctor diagnosed me with pseudotumor cerebri. I have been taking generic Diamox for 3 weeks and haven't had a single headache. I can take my dogs for a walk now. There are 2 side effects I experience: tingling in my feet, which was very bothersome but has lessened, and any beverages with carbonation taste terrible. No sodas, flavored water, beer, wine coolers, champagne. None of it tastes normal/good."

• Cai...
• Taken for less than 1 month
• November 28, 2014

Diamox (acetazolamide) "I have had IIH since June of 2014 but was diagnosed 'officially' with IIH in May 2014 after my first LP had an opening pressure of 45. I tried Diamox the first time, but it made me so tired I couldn't handle it, and then I went into spontaneous remission, or at least my pulsatile tinnitus went away, and I didn't need to keep taking it. I relapsed about a week ago and had an opening pressure of 55 after having extremely loud pulsatile tinnitus for a week. I was put on 1g of Diamox, and for the past week, the whooshing noise has gotten much, much softer, and sometimes I can't even hear it. I take Vitamin C to help with the tingling and have barely noticed it. I'm thankful my body is responding well this time, but it's different for everybody."

• Qua...
• Taken for less than 1 month
• March 16, 2013

Diamox (acetazolamide) "I was just diagnosed last week with PseudoTumor Cerebri. I had my first spinal tap yesterday. I started Diamox today. About 4 hours after the first dose, I took a sip of Mountain Dew and about vomited. It tasted like drinking melted nails. My appetite is lessened, which I am so glad about. I am 60 lbs overweight. My mouth is dry and my lips are somewhat numb. But from everything I have read, the side effects of this medication or any other would have to be really bad before I'd say I can't take this medication anymore. I pray the meds work so I do not need a shunt. I did not think of this as a disease. I thought it was just an occurrence like reflux or migraines."

• She...
• February 1, 2015

Diamox (acetazolamide) "Effective, but not without side effects. The first month was pretty bad - my hands, feet, and legs were falling asleep, and I experienced painful tingling and cramps. My joints also had problems, and I had to wear a brace on my knee for a little while. I was more lethargic. Anything carbonated tasted awful. I couldn't drink caffeine, or my whole body would feel weird and tingly. I also had to pee a lot during the first few weeks and was quite thirsty. Over time, most of the side effects went away, and my pressure went down. My vision problems completely went away. However, a new side effect appeared after about two years - tinnitus. It is definitely being caused by the medicine because I've found that skipping a dose makes it go away."

• Em7...
• November 12, 2017

Diamox (acetazolamide) "Side effects far worse than idiopathic intracranial hypertension (IIH) itself. Constantly nauseous, made no difference to headaches/pressure, suffered with slight breathing difficulties and palpitations, the tingling in hands and feet was more like cramp than tingling in the end... the list goes on.."

• Anonymous
• Taken for less than 1 month
• January 27, 2015

Diamox (acetazolamide) "I was diagnosed with Pseudotumor Cerebri 2 weeks ago after experiencing blurry vision and dizziness for some time. I got an eye exam done, and they saw I had a swollen optic nerve. The neurologist prescribed Diamox, told me to lose weight, and stop birth control. I noticed within about 2 days of taking the medication, the blurred vision is completely gone. The doctor told me to ease into the meds, starting with 1/2 of a 250 mg pill 2x/day for a week, then 1 250 mg pill 2x/day for a week, then if symptoms persist, take 3 250 mg pills 3x/day. This helped me get used to the side effects. So far, I have tingling in my fingers and sometimes my mouth. I pee a lot, but am trying to lose weight, so drinking lots of water and eating healthy and no pop is likely helping too."

• Mel...
• Taken for 6 months to 1 year
• January 12, 2017

Diamox (acetazolamide) "Diagnosed with Chiari Type 1 and Pseudotumor Cerebri in 2008. Started Diamox, and it changed my life. Within days, I was feeling so much relief. Over time, my dose went up, and the next move was an LP shunt, which has worked wonders for almost 8 years. It's starting to fail now, so my revision is scheduled, and I'm back on Diamox in the meantime. Yet again, symptoms under control with it. Yes, I have weird tingling in my face, hands, and legs, and I can't drink carbonated beverages. Oh well - I'm thankful to be functioning and not nauseous and dizzy and disoriented all day long. Diamox is the best thing, other than my shunt, for this disease. Very thankful for it."

• Sar...
• September 18, 2020

Diamox (acetazolamide) "I was diagnosed with pseudotumor cerebri. Let's start off with for about 3 years I have had the worst pressure headache every single day. One day I noticed I had a new pulsating whooshing sound with my headache. I was vomiting. The next day I went to the store and noticed I couldn't see anything around me. It slowly started to get worse. One day I woke up and could not see at all. They immediately did exams, CT scans, and an MRI. I also saw a specialist ophthalmologist who instantly saw how swollen my optic nerves were and suggested I be admitted for a lumbar puncture. My opening pressure was 54. They drained it to 15. It's almost been a month and I have only had 1 headache. My vision came back but still is not 100% at all. Right now I am on 1,000 MG of Diamox twice a day. I have no complaints about it yet other than tingling in my feet and constant urination. Just make sure you drink lots of water and take a potassium supplement. I'm being seen by neuro-ophthalmology once a week."

• Sar...
• June 9, 2015

Diamox (acetazolamide) "I was diagnosed in 2014, and I can honestly say it has been a very difficult disease to handle... though I know there are much worse out there. I was put on Diamox, and my headaches or vision problems did not improve, in fact, they got worse. I have had more migraines since starting this than I ever did before. The side effects are awful... no appetite, foggy head (I am barely able to function day to day), nausea, everything you try to eat tastes awful. I am glad this has worked for some, but I cannot continue taking it."

• Anonymous
• August 24, 2010

Diamox (acetazolamide) "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."