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 I start Diamox tomorrow ---- anything kinds of heads up for someone new to it?

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godsrosebud
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PostSubject: I start Diamox tomorrow ---- anything kinds of heads up for someone new to it?   Tue Jun 12, 2012 2:27 am

What can I expect while on Diamox?

Hi everyone!

I went to see my neuro today and he is taking me off the 80mg of Lasix and putting me on 1000 mg of Diamox as the Lasix isnt doing any good. I have been on it for a month and for the last three weeks have had bad headaches every day. So we are going to try Diamox - I cannot beleive how expensive it is even with insurance - I am gonna have to work full time just to afford to be sick ha ha :(

I was wondering if anyone could give me a run down on what to expect, having taken it personally. I know that all people react different but my Neuro just said "oh you might have slight tingling in the hands and feet". As he is about as helpful as tits on a bull -- I thought I would come to a place that is filled with people like me having the same experience. So any heads up you all could give me would be great! thank you


On a good note! I found a headache and neurology center in my town that takes my insurance that works with IIH and actually calls it IIH rather than what my current neuro calls it "pseudo tumor cerebri", so that brings me hope lol!

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Wylee
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PostSubject: Re: I start Diamox tomorrow ---- anything kinds of heads up for someone new to it?   Tue Jun 12, 2012 3:00 am

Great news!! Sounds like the pain place is a better place anyway.

I have been on Diamox for almost 2 years now, so I am finally used to it. What you may feel, first and foremost, is the pins and needles in your hands and feet. And it tingles and tingles. That does eventually go away. Just keep telling yourself that having the pins and needles is better than having headaches!!

I originally had an issue with nausea, My doc prescribed some very expensive meds, the stuff they use for cancer patients. She had me take the Diamox right before bed so I was asleep when it kicked in.

The other thing I dealt with was the extreme fatigue. That was a tough one for me. Took a bit to get used to that one.

So, that is my experience with Diamox. I was taking a rather large dose twice a day, so perhaps that made my side effects worse. I hope with your starting at a lower dose, yours won't be bad. You can always request the extended release (sequels) capsules instead of the tablets. Seems the side effects are less.

Good luck, and keep telling yourself, this is the better alternative!!
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godsrosebud
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PostSubject: Re: I start Diamox tomorrow ---- anything kinds of heads up for someone new to it?   Tue Jun 12, 2012 3:36 am

Thanks so much!

The Doctor has me on Diamox Sequels of 500mg 2x a day!

I have read that it soda never tastes the same after being on Diamox as well lol! I only drink Diet - but that to is bad for you so maybe that will be a good side effect lol!

Thanks so much for sharing your experience! I like to know what may happen that way I am not freaking out when it/if it does!

Again thank you! celebrate
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godsrosebud
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PostSubject: Re: I start Diamox tomorrow ---- anything kinds of heads up for someone new to it?   Tue Jun 12, 2012 3:37 am

sorry thought it was hug meant to send a hug - oh well the 4th is just around the corner lol!

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Gav H
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PostSubject: Re: I start Diamox tomorrow ---- anything kinds of heads up for someone new to it?   Tue Jun 12, 2012 4:52 pm

Hi godsrosebud.

I have been on Diamox for about a month and a half now and Im still going through testing and what not. I must agree with Wylee, the pins and needles are the main thing. Sometimes they can be very annoying, it has stopped me from driving once or twice, but much better than a headache. Other things as Wylee said, nausea, which I only really had in a morning and extreme tiredness. On the plus side, the pain of the headache goes quite quickly, its liberating Smile

The nausea disappears very quickly though, I haven't got any of that anymore and as I say its only been about a month and a bit. Havent really had the change in taste when it comes to Coke and such though, so guess that could be something that comes on with longer usage.

You may find it a bit rough to begin with though, it was for me. But you'll get through it quick enough. Hope you feel better soon Smile

Gav
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morrise
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PostSubject: Re: I start Diamox tomorrow ---- anything kinds of heads up for someone new to it?   Tue Jun 12, 2012 6:24 pm

I am on 1500g a days - the pins and needles do fade after awhile. I do suffer from the metalic taste and soda is awful to drink. My taste buds haven't been the same since I started them. I'm on them 7 months now. I have an odd day where I will just have a metalic taste in my mouth all day and nothing tastes right but its only every couple of weeks. I myself unfortunately still experience headaches most days. The tiredness is hard to get used to at the start cause you feel like you have no energy but that will also fade aswell.
Everybody's experience is different.
Hopefully you won't have too bad an experience
Good luck x
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godsrosebud
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PostSubject: Re: I start Diamox tomorrow ---- anything kinds of heads up for someone new to it?   Tue Jun 12, 2012 6:27 pm

Thanks everyone - after a good cry at the fact that its going to cost me 50.00 a week, I got the rx filled and have taken my first does - we shall see!
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Wylee
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PostSubject: Re: I start Diamox tomorrow ---- anything kinds of heads up for someone new to it?   Wed Jun 13, 2012 2:23 am

Hang is there Jessica. It's all part of having to deal with IIH, and hopefully the Diamox will do the trick for you. Sometimes it is possible to be able to get great results just by taking the Diamox and no surgery or anything else is needed. Wouldn't that be a lovely thought.
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lizzie793
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PostSubject: Re: I start Diamox tomorrow ---- anything kinds of heads up for someone new to it?   Wed Jun 13, 2012 4:45 pm

I have been taking 1000mg of Diamox since 21 April I have found the main problem being pins and needles and have managed to get some relief from wearing wrist splints. It is interesting that a number of you have said yout suffered extreme fatigue I mentioned this to the nureo specialist and was told that Diamox did not cause that. I was told to stagger the drugs rather than taking 2 on a morning and 2 on a night this has helped the side effects but I was not getting headaches much prior to this I now have them most days
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