User Reviews for Diamox to treat Pseudotumor Cerebri
Diamox has an average rating of 6.6 out of 10 from a total of 35 reviews for the off-label treatment of Pseudotumor Cerebri. 54% of reviewers reported a positive experience, while 26% reported a negative experience.
Reviews for Diamox
"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 had me reduce my weight and any pressure. I am now cured."
"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 it's job and not a trace of swelling! I'm able to come off it in a few short weeks. Thank God for good doctors!"
"Have been on the med for about 3 weeks. 1 pill - 125mg every night. Did not help...I still had episodes. Last week started 2 pills (in the a.m. and one p.m.). While it seems (so far) to be holding off the episodes, I feel AWFUL. Ears were already ringing and this has just turned it up. Nausea. General feeling of "I just don't feel well". Weakness and fatigue. Feels like I'm breathing in air but no oxygen...like I'm getting no benefit from it (does that make sense?). Slept for about 8.5-9 hours last night and still woke up completely exhausted."
"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 lil tingle in my feet for a minute maybe 4x a day, carbon drinks taste weird. I don't drink soda but due to food poisoning on New Years I didn't have to 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. Truely blessed for my family."
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"I got meningitis and and I thankfully I healed. I told my doctors several times my vision is not good, I can not 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 hospital with my vision problem. So I decided to go an eye doctor. Eye doctor saw that Papilledema back of my eye and it was scary because he told me this is emergency you can be blind. I just scared. And he was great doctor he told me they will probably give you diamox if it wouldn’t work they will put a shunt. And I went to the hospital they told me the same thing. And they start giving me diamox 500 mg in the morning 500 mg in the night 2 doses in a day. I used for 5 months and it worked. I 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 and alcohol. Stay healthy. God bless you all."
"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."
"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 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!"
"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 whilst 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!"
"I have been on this medicine for approximately 4 months. The benefits that I have had with my vision and headaches has 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."
"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 everyday with a headache and continue to have one well into the late evening before bedtime. The side effects are awful! I have lost 29lbs 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."
"I have been on Diamox since 2004 when I was first diagnosed with a 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 Bi-polar."
"I was just diagnosed last week with PseudoTumor Cerebraii. 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 to this medication or any other would have to be really bad before I'd say I can't take this medication any more. 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."
"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 drs say keep searching for answers. Try this medication if nothing else has worked for you!"
"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 that any beverages with carbonation taste terrible. No sodas, flavored water, beer, wine coolers, champagne. None of it taste normal/good. "
"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."
"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."
"Side effects far worse than Idiopathic Intracranial Hypertension (IIH) it's self. Constantly nauseous, made no difference to headaches/pressure, suffered with slight breathing difficulties & palpitations, the tingling in hands and feet were more like cramp than tingling in the end... the list goes on.."
"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."
"I was diagnosed with Pseudotumor Cerebri 2 weeks ago after experiencing blurry vision and dizziness for sometime. 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. Dr. told me to ease into the meds. starting 1/2 a 250 mg pill 2x/day for week, then 1 250mg pill 2x/day for week then if symptoms persist take 3 250mg pill 3x/day. This helped getting me used to the side effects so far I have the tingling in fingers and sometimes mouth. I pee alot but am trying to lose weight so drinking lots of water and eating healthy and no pop is likely helping to."
"I was diagnosed with pseudotumor cerebri. Lets 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 wooshing 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 seen and specialist ophthalmologist who instantly seen 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. Its almost been a month and I have only had 1 head ache. My vision came back but still is not 100% at all. Right now I am on 1,000 MG's of diamox twice a day. I have no complaints about it yet other then 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."
"I have only been taking the medication for a week. 500mg/day. I have lost 11 pounds in that week due to the loss of appetite. When I do eat I get sick. Nothing tastes good to me anymore. I'm having some crazy dreams at night. I urinate every 2 hours minimum. I get a tingling feeling in my fingers, face and legs. I'm having a spinal tap this Friday to relieve some pressure, I'm hoping after that happens I won't have to take this medication anymore. It has alleviated the headaches though!"
"I have only been on this stuff for a couple of weeks now but it has been a miracle drug for me. I have seen immediate relief. My visual disturbances dropped from a few times per hour to a few times per day. I'm hoping that improves further as my optic nerves have a chance to heal. I didn't think I had too bad of headaches before being diagnosed with PTC, but ever since I've been taking Diamox and the pressure has gone down my head feels normal again. It was like I had just got used to the pressure before treatment and didn't notice how bad it was until it was gone. As far as side effects, I have had some. I do get the tingles in my feet at times but it isn't too bad. And like others I can no longer drink carbonated beverages. Worth it."
"I had been diagnosed with pseudotumor cerebri when I was 10 years old. That was 16 years ago and have been taking DIAMOX on an 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 hurts 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 experience with the Diamox but the benefits to my eyes well outway the inconvenience."
"Hello. I am 18 and I have diagnosed with Idiopathic intracranial hypertension (IIH) December of 2016. As we all thought, I had a concussion because I played volleyball but it didn't quite flow with the big blind spot in my left eye and the perfect MRI and MRE scan results. Well, as my opening pressure from an LP was 49.7, more than half for my age, and being the first patient for my pediatrician, I have Psuedo Tumor Cerebri. My new neurologists put me on 2,000mg a day. Yes, this caused severe abdominal and GI upset for almost the first month I was taking it and a little bit here and there. My ophthalmologist has seen an improvement. My second LP as of 1/30/17 had an opening pressure of 28.7. They drained me to normal and took 10cc of instead of 8. I hope it keeps working."
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"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."