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katie781
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PostSubject: Hi All   Sat Sep 05, 2015 4:11 pm

Hi  All

My name is Katie, im 33 years old and have iih, ive only had the one lumbar puncture at present and last time I see the neurologist I was given the Topiramate tablets, but im yet to try them because im worried about the side effects, ive never had problems with headache (but the last couple of days I cant manage to shake this one off) Im back to hospital Friday so hopefully will feel better then

Thanks
Katie
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Sophiasmom
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PostSubject: Re: Hi All   Mon Sep 07, 2015 9:54 pm

hi Katie;
welcome to our group!  it's a holiday weekend in the States but others should be along soon to welcome you.  we are always here to answer questions or lend an ear if you just need to vent.  I can understand your worry about the Topamax side effects.  it was way too sedating for me.  so was Diamox.  I do better with Lasix, although for me it was my sleep apnea that was making things so much worse, so when I had jaw surgery for that it put me into remission.  my story is on the successes page.  some people don't have headaches, or their headaches aren't prominent.  I had about 8 per month.  my biggest symptom was brain fog, which was disabling.  I did not have papilledema, and some don't although the neurologists will many times blow off a person who doesn't have it, thinking it's not IIH or not a serious problem even without the pap.  if you are being treated for pap, you must treat that or risk blindness.  vision loss can come on suddenly and does not always require papilledema for it to occur.  if your primary problem is visual stuff and you can't tolerate the meds, you can always opt for ONSF: optic nerve sheaf fenestration.

feel free to share more about your story and ask questions.  we are here to help!
Deb
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medmisfit
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PostSubject: Re: Hi All   Tue Sep 08, 2015 8:51 pm

Yes, welcome Katie!!! We have been on holiday, but glad Deb was able to reach out and give you an overview. Everyone is affected by IIH and treatments differently, so unfortunately it's pretty much trial and error. Spinal fluid builds up, so they use diuretics to keep fluid levels down. Some people tolerate them, some don't. I personally did well with Diamox initially, but, after a brief period of no symptoms, I couldn't tolerate side effects and NOTHING seemed to help. It's also important to remember that manufacturers have to list EVERY side effect, even if only one person reports issues with it during the trial. I'm not a fan of medications, but this often makes side effects look much scarier. 

There are different medications, stents, sheathing, shunts, and integrative therapies you can try. Weight loss has helped some, but doesn't affect others. There are even those of us that didn't gain weight until after we were diagnosed.

Just review the site and let us know if you have any questions or concerns.

Take care,
Julie
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SyrahSux
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PostSubject: Re: Hi All   Thu Sep 17, 2015 12:43 pm

I've found topiramate isn't too bad! If you have problems with it see a chemist to see what to do until you can discuss it with your doctor.
When I was on it I noticed soda and carbonated things tasted funny to me, it also may make you lose some weight (i dunno if thats something you are worried about or not.)
I found the longer I took it, the less I noticed the effects, in my case, it only lasted about 3-4 days. You may be different.

Best of luck with it!
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Hi All

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