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 just joined the world of iih

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tntwhit

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PostSubject: just joined the world of iih   Thu May 31, 2018 12:25 pm

I have been diagnosed with iih after papilledema sent me on a LP journey. 31 opening pressure but am guessing it gets a lot worse at times. Achievement plus!! I think I have had this a very long time and the eye sight cracking up is what gave the doctors the magic to tell me it is all in my head after lol. Yes my sense of humor is a little curved as I am a Hodgkin's Lymphoma survivor. Thank you for having this wonderful site and it gives me some foundation to know I am not completely alone. peace x
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medmisfit
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PostSubject: Re: just joined the world of iih   Thu May 31, 2018 3:19 pm

Welcome to the forum!!! IIH can be secondary to different medications, sleep apnea, and systemic diseases like leukemia, so I'm sorry to say it's not a complete surprise you developed these symptoms. NORD has a lot of good information at rarediseases.org or you can check the Intracranial Hypertension Research Foundation at irhfoundation.org for more information about it.

I also encourage you to explore the forum posts and let us know if you have any questions or concerns.

Take care,
Julie
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tntwhit

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PostSubject: Re: just joined the world of iih   Sat Jun 02, 2018 1:33 pm

Thanks Julie. They have me on Diamox which seems to not marry well with my anti depressant but am sorting it out. I truly think I have had recurring IIH for many years with tinnitus, blurry vision,allergy tests. short list of many... etc but the pap is what got the ball rolling for diagnosis. Feeling empowered as some bonus to a crap situation. At least I know what is going on now and no doctor has rang in a fit so my worry of secondary cancer seems safe for now. feeling blessed
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Sophiasmom
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PostSubject: Re: just joined the world of iih   Sun Jun 03, 2018 7:38 am

hello, welcome to the forum.
when did your symptoms start?  I'm wondering if it could be one of your chemo agents that scarred your arachnoid granulations and triggered this for you.  it's worth asking your oncologist when you go for your next follow up.
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