Reviewer: goatfarm, 45-54 on Treatment for 10 years or more (Patient)

Comment:
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:
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.
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Reviewer: gwen, 55-64 Female on Treatment for 10 years or more (Patient)

Comment:
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:
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.
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Reviewer: KGAMom, 35-44 Female on Treatment for 2 to less than 5 years (Patient)

Comment:
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 ... Show Full Comment

Comment:
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.
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Reviewer: Sea_Angel1984, 25-34 Female on Treatment for 1 to 6 months (Patient)

Comment:
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 ... Show Full Comment

Comment:
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.
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Reviewer: tootired46, 19-24 Female on Treatment for less than 1 month (Patient)

Comment:
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 abdo ... Show Full Comment

Comment:
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.
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