Intracranial Hypertension

My journey into the land of the chronically ill began here by surprise. I quit smoking in 2012 (Yay me!!!), and put on extra weight as a consequence. Shortly after I started to get severe migraines—lasting up to nine days!! I started to see a halo, or glow around lights that was not normal. Light hurt my eyes, so we put up blackout curtains, and then had to tack them down so no stray beams of sun got into the room. Nothing seemed to help though, there were just a few things that did not make it worse. Then I started to lose my vision in spells. First it was just like a heavy gray fog descended over my eyes, but it quickly progressed to full on blackouts. I remember we tried to pretend things were normal, so we went to the water park for a day. I decided to try the tube slides, since it was my first time ever. I was nervous after the long hike up to the top of the stairs, but once I shoved off, it was fantastic fun—at least till the end. When I tried to stand up, I lost all vision. All I could do was stand there and hope it came back. I was too scared to move, lest I trip. Luckily it passed in a few moments, but it was far from over. I kept going back to my primary doctor trying to explain what was happening to me. At first they thought my blood pressure was just dropping quickly when I changed positions. I do have extremely low blood pressure for my age, and it did drop heavily when I got up. They said to increase my salt intake. It kept happening, but no one had any way to explain it, so I was referred to the Duke Eye Center, but it would be nearly six months if waiting! Luckily, my partner works with a neuro-ophthalmologist at Duke, and just consulted him OTR. The doctor immediately knew exactly what was wrong with me. A lumbar puncture, MRI, and MRV later, and I was diagnosed with Idiopathic Intracranial Hypertension, or IIH. Idiopathic because no one knew why I suddenly had it. I also had a condition called papilledema, and some loss of peripheral vision because of it. As I was (and still am) quite petrified of having a shunt placed in my skull, I began taking a diuretic called Diamox. I wish there was a cure, but sadly treatment caused as many problems as it prevented.