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 Alex- diagnosed feb. 2010

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Fuzziemitten
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PostSubject: Alex- diagnosed feb. 2010   Fri Mar 09, 2012 7:13 am

hi y'all! Excited about joining this forum and being able to talk to others with IIH (since there aren't many of us! Lol)
Anyways, guess this is a place to do a little bio about myself. I was diagnosed feb. Of 2010 when I was 21 years old. I've always been overweight since my teens but in nov. Of '09 my momma passed away, and I'm one of those that like to eat when there sad so I gained abt 30 lbs in the course of like three months, so I was up to around 230lbs then. January is when I started to get symptoms (headaches, blurred vision, ringing of the ears etc) and actually thought i might of needed glasses cause of the blurred vision etc. Went to the opthamologist, he saw the papilledema, told me I either had a brain tumor or IIH (he didn't say it that bluntly but it still wasn't what I was expecting lol). Fast forward a few months after seeing an optha-neurologist and spinal taps and pictures of the optic nerve and everything else and I was definitely diagnosed with IIH. Well, it was super surprising finding out I had such a rare disease and then figuring out how the hell to live with it lol. Right now Im going to a doctor at johns Hopkins who is amazing, and also a pain specialist who is pretty good considering he's never even heard of IIH before (don't y'all get tired of having to explain to everyone what it is??lol). Even though I've lost 30 plus lbs, my symptoms haven't gotten better but actually worse. My doctor is thinking shunt surgery is in the near future unless it doesn't get better within the next cpl months. The worst part about having it are the headaches. I have a headache every day usually all day, and super severe ones usually every other day. I can't work, I can't go to school, my social life has changed dramatically, and it's all from me being In so much pain constantlly. I usually have to lay down most of the day, and if I do go out I usually can only stand up for abt 4 hrs at a time. Ive been on so many different pain Meds but they don't help as much as It should which is frustrating. But anywhoosies, the main reason why I joined here is I'd love to be able to talk with others that have what I do. Since it's so rare it's hard to find anyone that really understands ya know. Sorry for writing such a huge intro lol but thanks for reading! Love y'all
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Wylee
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PostSubject: Re: Alex- diagnosed feb. 2010   Fri Mar 09, 2012 6:05 pm

Hello Alex, and welcome to the forum.. Yes, we are a merry little group here, and for sure the place to come to with questions and/or answers, to rant and rave and for the kind of support that is just so darn hard to find many other places. Because we have all been there, done that (or have a loved one with IIH) and are looking for the "answers", we can learn from each other, and as they say, KNOWLEDGE IS POWER!!

You didn't mention if you are taking any diuretics. I think Diamox is the most commonly prescribed (me too) and that seems to help. And although there is literature that says weight is a causation of IIH, we have many thin folks here that can tell you, that ain't always so!

There are many of us here that have shunts, so feel free to ask us any questions. We will be with you along your journey regardless of what is decided.
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Heidi
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PostSubject: Re: Alex- diagnosed feb. 2010   Fri Mar 09, 2012 9:28 pm

Hi Alex hug I am so glad you joined us. Wow you've had quite a time of it, but don't give up hope because we will help you to find a way to be able to enjoy your life again, despite having IIH. You only mention pain medication, have you not been prescribed anything for the IIH? If not it might be an idea to have a talk to your doctor about the possibilities of the medication usually prescribed to treat IIH.

Any questions you have about anything please ask away, and we have some really helpful information and booklets. We also encourage you to keep a symptom log so that you can make a note of your symptoms so that it helps when speaking to your doctor and keeps him uptodate about what is happening with you. You can find them all here Useful guides and printouts

Heidi
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