Added: 11 months ago
From: 25mmp
Views: 793
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  • Thank you for the video

  • 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

  • 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.

  • 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

  • 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

  • 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. : /

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