A Continuing Journey

My life with migraines started in high school. Back then, they were an infrequent monster that occurred once a month or so. The Doctors were unconcerned with them; I would be quickly excused from school, go home and sleep it off.

It was not until after the birth of my son that this pattern changed. My migraines increased to several times a week. My periods never returned to normal. Over time I was diagnosed with bilateral Thoracic Outlet Syndrome, Polycystic Ovarian Syndrome (PCOS), and Chronic Migraine.

PCOS and migraines do not play well together as PCOS hormonal imbalances, and for me those imbalance set off migraines that seem to never end. Added to this is the fact that I can’t take most hormone treatments, like birth control, to treat the imbalance because it makes the migraines worse. I feel like I am walking a tight rope where one wrong step and I am going to fall down in to some great abyss never to return from this hell called migraine.

I have several other triggers besides the hormones. Anything sprayed from an aerosol can will set me off, spray paint, perfume, hairspray, etc… Glaring lights; Bright lights; Pounding music; Cigarette smoke oddly does not, but incense does; Air fresheners. I have not discovered any foods that trigger my migraines, but I know if I do not eat regularly I will get one, same thing if I do not drink enough fluids.

In the fall of 2010 something began to change yet again. I was sitting at the computer one evening reading an article when everything in my field of vision tilted to the right 45 degrees. Imagine that… Take your computer monitor and stand it on its side, that was how I was seeing the world. It only last about 30 second or so, but it scared me to death. A few days later it happened again. And then and a funeral for a family friend, it happened again. Each time it would last a bit longer. I honestly wondered if I had a brain tumor.

I had no health insurance, an issue that has plagued me much of my adult life and has hurt my treatment effort tremendously, but I made an appointment with my doctor anyway. He really couldn’t help me or offer any ideas and made and appointment for me to see a neuro-ophthalmologist at the University Of Iowa Hospitals. What they discovered was that I was having a new for me kind of aura called an 45 degree optical tilt. He seem to believe it was pretty uncommon especially at that degree. I know it has become more common in my migraine play book over the last 2 years. It also has taken away more of my independence as I am more scared to drive with this new addition.

I’ve tried several medications over the years. Currently I’m taking topamax. Which I hate, and does not seem to be working. I hope to go off it at my next doctors appointment. I’m also taking imitrex with limited results. I’m getting a lot more rebound migraines than I have in the past with it. Due to limited health insurance I’m unsure of the next step.

I hate being unsure of the future. I hate the hold on my life my migraines have on me. I want to find a way to take my life back from them. I want to enjoy being around people again, not cringe when someone laughs to loud. I want to look forward to going places, not look for the quickest escape. I want to live again.