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 Introduction from New York

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kat2032
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PostSubject: Introduction from New York   Tue May 14, 2013 2:06 am

Hi, just want to introduce myself! I'm a 30-year-old mother of twin girls and was diagnosed with IIH a few years ago. We've been trying to manage it with acetazolamide and the headaches with topamax, but I guess things just came to a head this past week and a half or so when I spent the whole time incredibly dizzy and wobbling around with headaches that just kept coming, increased whoosy ears and even a weak and aching left arm. I was also diagnosed with Crohn's Disease last November, so I'm inflammation central these days. It's been really rough trying to work through it and I have to since my husband is unemployed at the moment. My girls don't understand why mommy always feels bad and they seem to think something being wrong is normal, so they keep coming over and saying something hurts them and I feel terrible!

My neuro sent me back to get my eyes checked again today, which showed I'm back to about where I was two years ago, so we might be heading for another LP and my neuro has started mentioning shunt, (which I'd naturally been shaking my head against the whole time.) I've been relatively mild til this week of unending dizziness, so it's never come up really much before. I guess I joined here finally because it looks like I might be in it for the long haul and I'm going to need somewhere to turn. My husband is unfortunately useless in the support department.

I'm pretty tired of rare stuff bombarding me -- I did a rollercoaster with my twins, who were a rare form of identical twins and I spent 7 1/2 weeks in NICU with them, so I'm hoping I can get myself into some semblance of normal life someday! Maybe I'll find some stories on here that will give me a glimmer of hope! :-)
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Wylee
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PostSubject: Re: Introduction from New York   Tue May 14, 2013 2:55 am

Hello Kat2032 and Welcome

It is very common to have peaks and valleys when you have IIH. We always hope that a minor adjustment in the meds can bring things back under control, after all, there is always that chance. I tried many different meds and combos of meds but ended up getting a lp shunt installed in 2011. It was an easy surgery and I have not needed any revisions, but that isn't always the case either. Just like everything else having to do with IIH, everyone is different.

By all means, stop by any time, to chat, ask a question or three, or have a good rant and rave. We understand, all too well, what having IIH means. You'll find lots of very caring, supportive folks here.
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medmisfit
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PostSubject: Re: Introduction from New York   Wed May 15, 2013 9:01 pm

Welcome to the group!!! I'm so sorry to hear you've hit another rough patch. I've also been struggling this spring. My ENT said the weather changes and allergies are affecting a lot of his IIH patients this spring because they all affect intracranial pressure..it's so annoying!

I'm glad they're monitoring your vision and thinking about other options. Linda's right, everyone responds differently..you just have to keep trying things until you find something that works for you. I personally didn't tolerate any of the medications the 2nd time, so ended up w/ LP shunt. I've had it for over 10 years now and am sure I wouldn't have survived without it. I have had to have several revisions, but still able to maintain full time employment. I would suggest that you check Useful Guides and Print Outs section for suggestions on how to talk to physician/surgeons about IIH. There's actually a lot of good information there, so check it out and let us know if you have any questions. We'll do our best to help you through it!

Hang in there!!!

Julie
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kat2032
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PostSubject: Re: Introduction from New York   Fri May 17, 2013 3:11 am

Thanks for the replies! I've been reading through posts and information and it has helped me understand a lot. And it's eased some of my worries to find that some things I have, others have experienced as well. Right now, we're going to go back up to 1,000 on the acetazolamide and see if that takes care of most things, and we've thrown in some anxiety tabs for spillover because that's a known issue of mine. Message boards were crucial when my girls were born, I don't know how I would have stayed sane without them -- so I'll probably hang about for a while! Ask advice here and there. Right now, if we get the dizzy back down, we might be able to hold off on an LP which would be lovely. And my GI is pretty pleased with where we're at with the Crohn's, so that's a plus.

Thanks again!
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medmisfit
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PostSubject: Re: Introduction from New York   Fri May 17, 2013 5:55 pm

Glad to hear you're making progress! Just continue to take care and let us know if you have any questions.
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