Living with Pseudotumor Cerebri: How it's Slowly Stealing Away My Life

I have suffered from a weird pressure-like sensation in my head for the past 20 years. I was a teenager when I first started experiencing this strange sensation, and doctors had no idea what was causing it. At first doctors diagnosed my head pressure as depression, but after realizing that I wasn't depressed, they simply began blowing me off. Soon the pressure-like sensation began to progress. First it progressed to neck pain, then to migraines, then to nausea and an extremely annoying "heartbeat-like" sound in my right ear that doctors refer to as pulsatile tinnitus.

My regular family doctor referred me to a neurologist who diagnosed me with Cervical Dystonia. Now I'm not a medical doctor, but I immediately knew that this was the wrong diagnosis, so I refused treatment. Cervical dystonia is a condition characterized by severe and painful muscle contractions in the head and neck, forcing the head to tilt to the front, back, or the side. My head and neck wasn't doing this. I thought about going to the Michigan Head and Neurological Institute in Ann Arbor, where a group of neurologists specialize in ridding patients of headaches by getting to the root cause. I changed my mind about going there because they wanted to hospitalize me in their inpatient headache program. I'm a busy wife and mother with 2 boys, and I couldn't just up and leave for 2 - 3 weeks and leave my husband with no one to care for the children while he works. I was finally properly diagnosed in 2009 by a neurologist at the Mayo Clinic in Jacksonville, Florida. I was so happy to have finally received a proper diagnosis that I didn't think about the fact that there aren't many treatment options for pseudotumor cerebri. Treatment options are medications like Diamox, Topamax, or Lasix or 2 different types of surgery. Sometimes significant weight loss for those who are overweight or obese works wonders. I didn't do well with the Topamax and had to be weaned off, Lasix only works very minimally, and Diamox, the number one medication for those with this condition, causes some rather strange and annoying side effects, and so far I am yet to feel any relief.

I realize that I am obese, but I'm working on losing weight. Unfortunately I have a lot of weight to lose, and in the meantime, I need some immediate relief. I'm lucky that I don't have any vision loss like many patients with pseudotumor cerebri do, but my life is full of misery on a daily basis because of this condition. If I'm not suffering from nausea and migraine headaches, I have a painless throbbing pressure in my head that is so intense that it feels as if an elephant is doing jumping jacks on my head. It's difficult to concentrate, perform physical activities (so much for weight loss) and just plain function on a daily basis. I have to force myself to take care of my family when 99% of the time I feel like lying in bed all day. I am going to keep pushing myself, though, and soon I'm going to undergo weight loss surgery in hopes of sending this horrible condition into remission. I pray that the weight loss surgery works, because my next option is having a shunt placed in my brain (or spine) in order to drain the excess fluid. I'd rather not have surgery on such delicate parts of my body, so hopefully weight loss from the bariatric surgery will give me my life back. If not, I will keep fighting for relief, because I refuse to give up.