The story of Emma
Idiopathic Intracranial Hypertension is a rare disease that is classically characterized by pressure headaches, vision loss, optic nerve swelling, tinnitus, and vertigo caused by excess spinal fluid buildup around the brain. Due to it being a chronic illness, there is no cure, but there is a chance of going into remission.
I’ve had migraines throughout my life, but they always came and went after a while. Starting around June of 2019 I started developing a different type of head pain, more pressure than anything. Then my vision started getting worse, I was having trouble seeing and having visual blackouts. Up until last year, I’ve always had 20/20 vision with no need for glasses or anything of that sort. After a couple months of trying all headache medicines under the sun, my primary care doctor sent me to a neurologist, who then diagnosed me with Idiopathic Intracranial Hypertension/Psuedotumor Cerebri. I underwent a CT scan, an MRI, MRV, and an MRA then finally my first lumbar puncture. The opening pressure was 25 with the normal being 15 and under. The instant relief was amazing, but sadly, it was short-lived because of the rapid speed in which spinal fluid regenerates. Since diagnosis, I’ve been on two different diuretics to try and bring it under control to no avail. So, on January 24th, 2020 I took the leap and went through the gastric sleeve surgery in an effort to see if it will help put me into remission. Its still too early to determine if the gastric sleeve will help, but if it doesnt, I’ll more than likely end up with a shunt to continually drain fluid.