Idiopathic Intracranial Hypertension
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Uploaded by 25mmp on Mar 3, 2011
My Journey with Idiopathic Intracranial Hypertension (IH). I was diagnosed with IH December 7, 2010. AKA~ Pseudo tumor Cerebri.
I've had symptoms of IH since around age 12, but was never properly diagnosed until December 2010. My purpose in making this video is to promote awareness about the horrible, debilitating disease. This disease is recognized as a RARE DISEASE out of 7,000 rare diseases. Having IH is extremely frustrating because everyday it's something different. People who suffer from IH often look fine & healthy, but actually aren't. It's a disease which no one else can see the pain we suffer on a daily basis. . .
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View attributions »
- 15:04
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Thank you for the video
mooshmoosh13 5 days ago
I had IIH for 10 yr I am a mom of 2 girls. I was dx in 2002 just after the birth of my 1st daughter is so hard as u know. i had 15 nero surgeries in 2010. Thanks for sharing your video no one think of young mom's struggling with a horrible disease with headaches that don't go away when ur little ones play on the floor. Blessing and many pain free days.
Alaina
willhs84 1 week ago
I have IH, I'm 14. I was on Diamox but now doing a VP shunt. I've had 9 brain surgeries already. I have a brain and abdomen tumor, low grade Ovarian cancer (carcinoma) also a heart condition that makes treatment difficult. IH has caused me to go completely blind in my right eye and almost blind in my left. I wish you the best of luck.
Littlebear037 1 week ago
Hi! What a moving video...my husband has IH aswell.. dx 2003. Are you on facebook at all? There's a huge IH support network on facebook! I help to run the IH Brain pain team FB page (supporting the IH Research fdtn).
Wishing you all the best!
Victoria Taylor
vickiTauthor 8 months ago
i have it to. i was diagnoised with it in the sixth grade. it was really hard. having to take topamax and another medication. i am now a senior in high school and went into remision last year. i recently had headaches again and now have had MRIS and spinal taps again and am back on topamax. stay strong.
xx makayla
Luvthesummer2011 9 months ago
I was just diagnosed with pseudotumor cerebri 10 days ago. CT Scan confirmed it. MRI, EEG,ENG and a hearing test are being set up. Neuro Dr. also told me to go to an eye Dr., because it's been 2 yrs since I went. My vision is going. I can not see to my sides anymore, and the rest comes and goes into a big blur. No mention yet of a lumbar puncture for me, but I see them in my near future. I have a headache right now. Neuro told me not to take OTC meds for them. : /
pris72 10 months ago