3 words. Idiopathic. Intracranial. Hypertension. Never heard of it? Yeah, neither had I till I got diagnosed with it back in June of 2015. IIH, also known as Pseudotumor Cerebri, is a rare neurological condition in which the pressure in your head builds up due to an excess amount of cerebral spinal fluid (CSF) around your brain. The reason for the buildup of CSF is unknown. In my case, the ventricles in my brain are open like they should be, I don’t have any abnormal swelling in my brain; I don’t have anything that would lead to CSF building up in my head. This is the case for most people diagnosed with IIH. Less than 200,00 people are diagnosed with IIH every year. Most doctors have trouble diagnosing it due to the fact that it can sometimes present itself like a migraine. Let me tell you, IIH headaches and Migraines feel like 2 completely different things.
For myself, it took an unbearable headache, 2 trips to the emergency room, me passing out, a ton of doctors, and a very long hospital stay, to finally figure out what was wrong.
During my first emergency room visit, the doctors just kind of blew me off(not surprisingly). They said it’s just a headache, gave me some caffeine/acetaminophen pills and sent me on my way. I never ended up taking any of the pills, because the hard stuff (800mg of Ibuprofen every 4hrs) wasn’t working I wasn’t going to put a bunch of pills in my system that I knew weren’t going to work. Two days later my mom got home from work and found me passed out face first on the floor in my bedroom, I had been there for 2 hours. She took me back to the emergency room, where they suddenly started to take me seriously. They ran an EKG, and a CT Scan. Those came back fine. They originally didn’t run an MRI because I had had a brain MRI 3 days prior and they wanted to see the results of that first. After everything looked fine with that, they decided to treat it as a headache, again. They pumped me full of Benadryl, Zofran, Dexamethasone(steroid), and Topamax and waited to see what happened. Unsurprisingly, nothing happened. I ended up getting admitted to the children’s hospital and from there we would decide what would happen next. Later that morning (I got admitted at like 3am) all of the doctors met and decided what the plan to treat me was going to be. They brought in both pediatric and adult neurology to see me. After a couple days of different drugs and absolutely no relief, the head of adult neurology mentioned I have a lumber puncture done to check the pressure in my head. It was this great idea that finally led the to a diagnosis of IIH. My pressure came back at 28, which anything above 20 is considered high. They put me on some meds to start absorbing any extra fluid that didn’t get drained off and hope that the meds would work. At first I didn’t take my diagnosis seriously. I didn’t know how serious it can be. It wasn’t until I learned that if my pressure got to high, that I could go blind, or have more neurological problems that I realized this was serious.
Since my diagnosis, things have not been easy. I have been hospitalized 4 other times due to unbearable pain, my pressures have gotten dangerously high and I have had my meds raised over and over again with no improvement. I was having lumbar punctures every couple of months to relieve my pressure and it just kept building up. Eventually, my meds stopped working and we had run out of almost all my options.
October 2016 I had to have a shunt placed, this was the very last option. I was starting to lose my peripheral vision in both eyes and I was having constant IIH headaches. Before surgery I had to have a monitor called an Intracranial Pressure monitor placed in my skull to make sure that my pressures were constantly high and it wasn’t just random times. The monitor was in for 3 days and my pressure was really high for all 3 days. Two days after the monitor was removed, I had my surgery to place the shunt. It was a very rough recovery. I am 10 weeks out of surgery and recovery has gotten better, but is still rough. I am happy to say I haven’t had as many IIH headaches as before and my pressures don’t seem to be as high. My neurosurgeon is now just watching me for the future because shunts are known to cause problems. Hopefully that won’t be the case for me, but we don’t know what the future holds.
I hope with this post I am able to bring awareness to IIH. The more you know.