Idiopathic Intracranial Hypertension

Hey everyone. Over the past month, I have had numerous visits to the ER, hospital stays, too many medical tests to count, and officially got a diagnosis of Idiopathic Intracranial Hypertension, also known as Pseudotumor Cerebri. This is a rare, life long condition with no known cause and no cure.  I’ve found this article summarizes it well.

 https://www.iih.org.uk/shopimages/pdfs/Information-for-family-friends-and-carers.pdf  

For the time being, I am unable to work due to the symptoms of the condition and the awful side effects of the only medication that has the potential to help. I’m hoping medication will eventually help and will be able to not only preserve my vision, but prevent the need for countless surgeries and allow me to find some sort of sense of new normal in my life with IIH. 

I’m not someone who easily asks for help, but bills, medical and otherwise are adding up quickly having not been able to work and not knowing when I’ll be able to return to work. 

If you are able to help, any little bit would be greatly appreciated. If not, please share. Until a couple weeks ago, I had never heard of this condition. 

I’m happy to answer any questions anyone may have, again, I had never even heard of this until a couple weeks ago.