IIH Timeline

I wanted to put together a timeline so I could keep dates and whatnot straight in my head.

November 12th(ish) - I started having neck and shoulder pains. I thought I pulled a muscle. Over the next two weeks I proceed to WebMD myself and self diagnose a pulled trapezius muscle. I even posted about it on facebook. It got progressively worse and I started getting pretty bad headaches in the base of my skull. I became convinced that I had a brain tumor, WebMD disagreed so I bought some icy hot and tried not to worry.

November 26th - I started to experience double vision. I thought it was an ocular migraine and refused to go to urgent care. Hubs disagreed. They agreed with my assessment and sent me home with a script for Excedrin Migraine.

November 29th - The double vision is still present. I called my PCP (the school nurse told me I had to) and he made me an emergency appointment with an ophthalmologist. The ophthalmologist took one look at my optic nerves and told me I had to go to the ER immediately. She called my PCP.

PCP had Dr. Cowboy waiting in the room for me. He did a neuro exam and ordered an MRI but made a tentative diagnosis of IIH.

MRI and LP confirmed IIH. I was sent home with a perscription and really no fears.

November 30th - We get the prescription late because the pharmacy doesn't have it and there are concerns about allergies. I have a slight headache.

December 1st - I go back to the emergency room with the worst headache I have ever had. They give me something to help me sleep and a pain drug. They help me doze off but as soon as they start to wear off the pain starts to come back. They admit me for main management purposes. I cry.

December 2nd - I get my second LP. My pressure is 40. I realize there will be good days and bad and I start to learn more about IIH.

February 29th - Rare Disease Day! I get my 3rd LP. Pressure is 30.