A Lifetime of Headaches

I got my first migraine with aura when I was 7, althought I didn't understand what it was at the time.  By the time I was 11, I started to get them several times a week.  These headaches would start with a visual aura, and end in agonizing pain with vomiting for 8-10 hours.  If you've never had one, it's impossible to explain.  It's like your entire body has the migraine.  Even when the stabbing pains in my head would cease I still felt horrible all over - weak, nauseous, and dizzy.  These headaches were tied to my hormones, so once I went on birth control I only got them several times a year in times of extreme stress.  When I did get them, Imitrex (sumatripan) usually helped.  My headaches were mostly under control, and I really didn't think about them much.

Then in 2007 came the virus that turned my entire life upside down and shook it, making sure no facet was left unaffected. It was Epstein-Barr (mono), which is usually annoying but pretty benign.  During the week of my acute infection, I had terrible neck pain and headaches that were different than any headache I had before.  I never got over the Epstein-Barr.  Four years later, I am still living with chronic Epstein-Barr virus (CEBV) which has spurred fibromyalgia and occipital neuralgia, those awful neck pain headaches.  The migraines with aura also started occurring more often, but I suspect that's from the stress of having chronic illnesses.  All of these conditions have forced me to leave my job and career, and now I'm mostly homebound.

About two years ago, the occipital neuralgia headaches became daily.  I have not had one day since where I didn't have a headache.  Using the pain scale of 1-10, the intensity averages at a 6, spikes up to a 8 at least twice a week, and never ever goes below a 3. Last fall, the condition progressed further to where I now have trigeminal nerve pain as well.  So my headaches now encompass my neck, head, and face.  Of all of my health problems, these pervasive headaches are what restrict my activity the most.

I've spent the majority of my life fighting headaches, and in the last couple of years the headaches have been winning.  I'm tired of bowing down to them and accepting my fate as the girl who has to spend all of her time in a dark room with an ice pack.  That is why I'm getting the occipital neurostimulator.  I need to regain the upper hand.

I plan to address what occipital neuralgia is, the treatments I have tried, how the pain affects my life, and my trial stimulator surgery experience in more detail in subsequent posts.  Stay tuned.