Idiopathic Intracranial Hypertension

The story of Allison

Three years ago I began to experience severe daily headaches, nausea and vertigo. I didn’t think much of it (thought it was migraines), until I started to have very blurry vision and then vertical diplopia (double vision) and sixth nerve palsy. I first went to an optometrist who prescribed much stronger glasses with trifocal lenses. They worked for about a week, and then I had to go back. I was alarmed when he referred me to see my doctor and gave me a full refund. After a lot of testing for diabetes, etc. I was referred to an ophthalmologist who gave me a diagnosis of IIH based on the severe papilledema in both eyes. He prescribed Diamox for treatment, and about a month later my headache was severe enough to go to the ER where I had my first lumbar puncture and confirmed my diagnosis as IIH because of highly elevated spinal fluid pressure. I bounced around to different neurologists because Diamox was not relieving my symptoms and my vision deteriorated until I could no longer drive or continue working.

I took a medical leave of 6 months and continued making the rounds for lumbar punctures and being referred to other neurologists. Finally it was decided to send me to neurosurgery for a VP shunt placement, which I am now recovering from. My vision, vertigo and nausea have improved dramatically and I am able to work again, but my shunt has not fully resolved my daily headaches. Having a shunt brings on a whole new set of challenges for me and I am told I may need a surgical revision shortly.

I am a participant in research studies with the Intracranial Hypertension Foundation and I urge anyone else with this condition to sign up so they can find a cure. You can choose to share your ongoing medical records and I’ve also completed enrollment for complete brain donation.

Thank you for bringing attention to my rare disease, and I hope cures are found for everyone suffering from these rare diseases.