Comment from: knotnobuddha 65-74 Transgender 5 to less than 10 years Caregiver Published: May 19

Diagnosed with Retinities Pigmentosa over 8 years ago. Cannot tell any effect, have tried various dosages. I also have Mieniere's. -- for this, with no scientific evidence - I am convinced it helps. I take sparingly, as I feel I need. Acts as a diuretic, which some recommend for inner ear problem.Maybe, just maybe another off label use??? Interested on any insight - does this sound sane?

Comment from: maria 19-24 Transgender less than 1 month Caregiver Published: April 28

they are giant pills. im on day 6, i am switching from topamax 2 times a day to this, 2 times a day but these are giant capsules. anyway, i have noticed i am extremely tired. i didn't think much of it since i am always tired but i cant even walk around my house or up the stairs without becoming exhausted. i have had diarrhea yesterday and today. so far not any tingling i can notice, but topamax made me tingle A LOT, so i may have some tingles and not realize since it might not be as bad. my eyes hurt, but not the hurt that something is pushing on it, more like when you get a flash of light in your eyes and it stings. i feel a little anxious but that could be because i am stressed about being even more tired than before (lol).

Related Reading: topamax | diarrhea

Comment from: Randa 35-44 Transgender 1 to 6 months Caregiver Published: April 21

Though there has been some really rough side effects they’re not bad enough that I want to opt for a brain shunt. One question though, has it caused anyone else to lose an excessive amount of hair??

Comment from: LindyLou 65-74 Female 10 years or more Patient Published: November 03

This medication has been a godsend to me. I have altitude sickness when I am as low as 7,000 feet. The first time I took this medication, I had a strange feeling in the base of my brain for the first 6 hours after taking the initial pill, but I never had that or any other side effect since that initial episode. This medication allows me to be comfortable at even 14,000 feet. I am prescribed this anytime I am traveling to a high altitude. I basically live at sea level and could not travel as we do to wonderful parts of the world without this medication. I only use it two or three times per year.hme761

Comment from: liv5411 19-24 Female 1 to 6 months Patient Published: March 05

I was taking this medication as a short-term solution for my pseudotumor cerebri until I could have my surgery done. This medication did do what it was supposed to. However, the side effects were horrible. I was always short of breath ( my O2 % was at 92% a majority of the time) and I was always tired.

Related Reading: pseudotumor cerebri

Comment from: 55-64 Male Patient Published: November 01

Used to altitude sickness even on airplanes (cabin air pressure similar to 6-8K feet)and higher mountains. This medicine has been a life saver for me in avoiding that headache pain, and associated nausea. Well worth trying if these symptoms seem like yours.

Related Reading: headache

Comment from: wildman 45-54 Female 1 to 6 months Caregiver Published: July 05

been taking 2000mg a day for 3 months, had Optic nerve sheath fenestration done 2 months ago, still pressure is to high 45. going in tomorrow to have a brain angiogram done, tons of test and still trying to find a cause so I don't have to do a shunt. For me I am one of the few that the drug didn't help but they don't want to take me off just in case it is working some. Metal taste, fatigue, and the runs are the worse,, so far, on the weekends I sleep 11 hours to catch up on what I loose during the week

Related Reading: fatigue

Comment from: Red Queen 45-54 Female 10 years or more Patient Published: January 12

Have been taking this since I was diagnosed in 1999. My neurologist told me that I was a textbook case because it worked so well for me. Started out on 250 mg (3) times a day and now only take twice a day. I am going down to 1 a day and hope that the fluid stays at bay. I don't want a spinal tap again.

Comment from: Curlygirl 45-54 Female 1 to 6 months Patient Published: December 09

Pain started in December 2014. This medication has done wonders.I feel like a human again.

Comment from: PolishedStone 55-64 Female 6 months to less than 1 year Patient Published: August 09

Effective to reduce eye pressure and damage to optic nerve. Temporary side effects included significant change in how things tasted and minor nausea. I had permanent worsening of tinnitus, but full effect didn't show up until after I had stopped the med (about 6 months). Still better than a brain shunt which is the only other option.

Related Reading: tinnitus

Comment from: Crystalmarieb 25-34 Female 1 to less than 2 years Patient Published: July 08

I have been on this medication for a little over a year. I have super high pressure in my head and was blacking in and out in my right eye. And towards the end started blacking out in my left. I take 250 MLG 4 times a day which is hard to do. Although the crazy headache is gone I constantly still hear the load throbbing in my right ear. The wanted to put a shunt in but that is terrifying. And I don't know if it will fix the problem completely . so I just deal with was problems I have left. Since theybars nothing like they used to be. I can actually function. The only side affect I have noticed is hands going numb. And soda tasted weird the first couple of months.

Related Reading: headache

Comment from: goatfarm 45-54 Female 10 years or more Patient Published: October 16

I have been taking this medication for over 10 years and the only other option was a shunt in my head. It is an extremely expensive medication, but I have no other choice, but to take it. It is the one thing that I CAN NOT live without. I will gladly deal with the unpleasant side effects and the cost-if it keeps me from needing a hole in my head.

Comment from: JC 45-54 Male less than 1 month Patient Published: July 13

I had an extreme adverse reaction to this drug, extreme lack of energy, and nausea, by the second day of minimal dose, by the fourth day continuous vomiting, I then discontinued for three days where I was feeling close to normal, and again tried to start the medication, by the second day I again was vomiting, note: i took the medication with food, and it did not change the outcome.

Comment from: gwen 55-64 Female 10 years or more Patient Published: May 19

I've taken Diamox for over ten years. Although I've had several CSF leaks, the only solution is a shunt. I think that I can live with Diamox.

Comment from: leblanc 19-24 Female 1 to 6 months Patient Published: March 28

Like others, after only one day I started to feel side effects. Luckily after now 3 weeks on this pill, I they have practically all gone away. The first one I noticed was tingling in my feet and knees. I felts light headed. I did not vomit but I constantly felt like I was about to. My mouth was dry. I had to, and still do, go to the bathroom like 20 times a day to pee huge amounts. But like I said, it all went away, except for the tingling and going to pee often. This drug definitely requires some getting used to but it wasn't, for me, AS BAD as I have read on here. Be patient and don't panic. Jist prepare yourselves for some mild side effects that are likely to pass in a couple of weeks. I certainly prefer having some tingling in my feet or a dried mouth rather than losing my vision. The benefits of this treatment outweighs the side effects.

Related Reading: treatment

Comment from: KGAMom 35-44 Female 2 to less than 5 years Patient Published: January 22

I have beeen on this for almost 3 years. I stared at 250mg twice a day and now take up to 5000mg a day depending on altitude & weather. The potential severe side effects now outweigh the effectiveness of the drug leaving me no option but a programable shunt. My problem was caused by a failed trial 9 years ago & I am terrified now to have them drill into my head. The thought of leaving behind my 3 children is torturous, however remaining on the medicine has deadly side effects too. Over the past 3 years I have also suffered from all the side effects everyone has discussed, extreme exhaustion, low libido, confusion. I wish PTC on no one.

Comment from: Sea_Angel1984 25-34 Female 1 to 6 months Patient Published: December 29

After being diagnosed with PTC in October I began to research and find out how other people were faring on the journey. I had never heard of anything like this before and I was just happy that it wasn't an actual brain tumor. The only major symptom I had was papillodema, rarely did I even get headaches so I was surprised to find out that something was seriously wrong in my head. I was told to try and lose some weight and start taking 1000mg/day of Acetazolamide. I was nervous to start taking the drug because of all the horror stories I had been reading. The first three weeks on the drug were rough. Tingling in my hands, feet, and mouth were insane and took some getting used to. My energy level dropped even lower to what it had been before. I couldn't even walk up the stairs without having to sit down and catch my breath. I refused to touch carbonated beverages because I didn't want to experience what everyone had been saying about the side effects. I had diarrhea almost every day, and just wanted to sleep most of the time. Then all of a sudden my body must have gotten used to the medication because I started to feel better than I had even before being on the medication, the side effects have mostly disappeared (almost four months now) and I just have the occasional tingling in my hands and toes, especially if it's cold. I have lost 25 pounds since the beginning of October and I see my Neuro-Opthamologist every month. At my last visit he says that he sees improvement in my eyes and that things are heading in the right direction. So though things might be rough now, I say hang in there because it does get better.

Related Reading: acetazolamide | diarrhea


In the U.S., 1 in every 4 deaths is caused by heart disease. See Answer
Comment from: tootired46 19-24 Female less than 1 month Patient Published: December 25

This medication definitely works for me. After 4-5 days the headache was almost completely gone and I have now hit day 7 with only a very slight headache that's not easily noticeable. The downsides are what other people have previously described: I am always tired, always taking naps, and have no energy to do enjoyable things. I bruise easily, I am so weak, non-existent libido, nausea and abdominal pain (taking Zofran to help), and tingling sensations in the hands and feet. This medication is no joke, but it did help. It does beat surgery and it does beat a severe headache.

Related Reading: headache | zofran

Comment from: 45-54 Female 1 to 6 months Patient Published: December 16

This drug completely eliminated the muscle weakness I had been waking with in my arms, and made breathing effortless. The downside is cognitive impairment if I take it during the day. I also get insomnia from it, but I'm starting to sleep a little better (some nights). I intend to stay on the drug for as long as my neurologist will prescribe it.

Related Reading: insomnia

Comment from: 25-34 Female 1 to 6 months Patient Published: November 12

I've been on diamox for 4 months now. I was taking 500mg twice a day, now I'm on 250mg twice a day. I lost 15lbs in a month. No idea what my weight is now. My vision is good now, no more black outs. I have been taking Lexapro because I was so irritated, and having panic attacks possibly because I've been going through a lot withmy PTC. I was having my hands, feet and lips tingling and now my hands only tingle once in a while. I get so lightheaded that sometimes I almost fall over. (it's the diamox) sometimes my stomach hurts, it feels like I'm a drug addict because I take two medications and I believe it's tearing my stomach up. Lately I've been having diarrhea. I have no idea if it's a side effect or not. I do urinte quite often, I even wake up in the middle of the night 2-3 times. I do feel like I get so tired I need to go to bed sometimes and that I don't want to do anything. I'm a stay at home mom so it's a little easier for me. I've learned DO NOT forget to take your diamox, you get your headaches back and you feel very like "needing it" like your a drug addict. Oh I've been very forgetful also. Neurologist says it's the diamox. I just want to be healthy and not have to do this anymore. I hope this helps.

Related Reading: lexapro | panic attacks | diarrhea

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