I was diagnosed about a week ago and started Diamox right away. The pins and needles are relentless. They show up any and everywhere! The worse is my nose/tongue/lips/throat. It also gets worse if I’m cold. I’m taking the Diamox cause I need this pressure to get better but my word!!!

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2 comments

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Posted by11 hours ago

I feel so lonely

Advice

Hi I’m 19, I’ve been diagnosed for about 2 years now. At first it was so hectic and I thought my life was over, then it got easier things were in my control a bit but for the past year I just feel like my health has declined so much and I just have no one to talk to. No one understands, and I just feel so annoying when I keep trying to talk to someone about it. I never know what to say, and even then it’s just like they pick and choose what to listen to. So I feel alone. I guess I’m just trying to ask if any of you feel or have felt the same ? And if so how do you manage ?

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5 comments

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Posted by1 hour ago

Inducing Lactation/ Breastfeeding

Advice

Hello there, just curious if anyone who has been diagnosed has ever induced lactation before? Or if those who’ve breastfed have experienced increased pressure and/or changes in symptoms?

From my knowledge, any sort of hormonal change can led to an increase in pressure and cause symptoms and I’m just wondering if prolactin hormones would have the same effect as birth control.

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0 comments

7

Posted by15 hours ago

IIH and diamox

Medication/Treatment

First off, I am so excited to have found this community. Feels like a random lonely disease that no one has ever heard of so yay for us. I started diamox today and was wondering how literal to take some of the things I’ve read. Upset stomach, no caffeine, etc.

Should I really not have coffee?!? ☹️

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9 comments

About Community

This is a safe, kind community for those living with Idiopathic Intracranial Hypertension (IIH), a rare disease where a person has a high level of intracranial pressure; to learn, connect, share experiences, and find support. Those who are in the process of being diagnosed, have been diagnosed, or have loved ones with IIH are all welcome. Older names that have been used include Pseudotumor Cerebri and Benign Intracranial Hypertension.

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