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 Available medicines for IIh?

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Thom
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PostSubject: Available medicines for IIh?   Fri Sep 07, 2012 1:18 am

I was diagnosed with IIH January 2012 after ten years of various problems that got worse. My doctor just took me off Diamox and not soon enough but after 2 days symtoms began returning minor headaches, pulsing tinnitus, red eyes, etc. What choices of medications are there?
Are there any with less side effects?
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Wylee
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PostSubject: Re: Available medicines for IIh?   Fri Sep 07, 2012 3:35 am

Hi Thom, and Welcome3

There are other meds that can be tried for IIH. I tried many of them before my docs finally decided that a shunt was the only way to control my IH. However, there are others who have been able to control their symptoms through periodic lp's and meds. The problem is, is that all meds have some side effects. It becomes a trade off. What were your issues with the Diamox? Did you show a sulfa allergy? Was it the tingling in the hands and feet? Is your doc(s) talking about trying other meds or are they going to have you make it on your own????

We will try to help you as best we can. Since we are not medical folks (most of us anyway), all we can do is relate what we have tried and what has or has not worked for us. Sometimes that is just info for us to bring to our docs to start a dialogue.

I'll get my list of meds together and get back to you on that. In the meantime, have a good look around. Lots of good info here.
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medmisfit
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PostSubject: Re: Available medicines for IIh?   Fri Sep 07, 2012 4:26 pm

Heidi has listed several meds in the first post of the IIH and Medication section:
Diamox/Acetazolamide
Lasix/Furosemide
Methazolomide/Neptazane
Topiramate/Topamax

Linda's right..they all have side effects. It's important to remember that everyone reacts differently. I tend to have a low tolerance for everything, but I know there are members who've had good and bad experiences with each. You can also see their posts in the med section. I hope that helps..good luck!!!
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mrsmullsie
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PostSubject: Re: Available medicines for IIh?   Mon Sep 10, 2012 2:08 pm

Hi Thom! I cannot take any of the meds! Diomox and Lasix are sulfa drugs (as are all loop diuretics), and my kidneys cannot handle Topomax. Because of my inablilty to safely take the medications for IIH, I have had to have lumbar punctures every 2 weeks (not fun!), and now I have an appointment with the neurosurgeon this week about placing a VP shunt. If you are not able to tolerate the medications has your neurologist discussed the shunt?
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Thom
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PostSubject: Re: Available medicines for IIh?   Mon Sep 10, 2012 5:29 pm

Hi,

My neurologist described the side effects of Diamox but did not go into great detail. He said I might get some of them for a short time.Lol! The ophthalmologist confirmed that I had moderate Papilledema and started me on Diamox 1000mg once a day. I was extremely tired and confused. felt sick. The tingling started in my hands and feet and my memory which was bad before I started worsened. Feeling sick would not go away but increased. When I complained to my doctor he says this is normal. Well a short time after this went to a party at my relatives house who happened to be a nurse. After telling her what I was being treated for and mentioning Diamox she says you can not drink coffee or anything with caffeine in it. Immediately after I quite coffee no sick feeling. Then I checked on line for drug interactions and found I could not take Pepto Bismol which I had also been taking. It was very difficult to work even after watching what I consumed. So when the Papilledema was gone I was taken of the Diamox.
Can anyone tell me if this is normal to just be taken off suddenly? My doctors seem like they are just guessing!
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Heidi
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PostSubject: Re: Available medicines for IIh?   Mon Sep 10, 2012 7:09 pm

Hi Thom and welcome to our group. Do you know if your doctor is going to monitor you while you're off the Diamox for a few months, or has he just taken you off them and left things open? In my own experience I was kept on Diamox, even when I went into remission, but I suppose it boils down to the doctors knowledge and experience of treating IIH, as to whether toallow you to continue on medication or not.
Your doctor seems to have not been aware of any of the drugs side effects, and the do's and don'ts, which could indicate he hasn't much experience of treating patients with IIH.
Keep a symptom log which you can find in our recommendation for you section, because then if you notice any of the symptoms returning, you can keep an accurate record to give your doctor.
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Wylee
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PostSubject: Re: Available medicines for IIh?   Tue Sep 11, 2012 7:00 pm

Thom, I even have a lp shunt installed and still take 250 mg of Diamox every day. It is great that your pressure has gone down, but, as Heidi said, what are your docs planning on doing to keep it down?? I, too, am wondering about the rate of experience your docs have. You may need to find a new doc or become your own advocate and tell the docs what needs to be done.
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