Caught Between a Rock & Hard Place
It seems like I cannot remember a time when my head hasn't hurt. Oh, I know there have been stretches, but it's hard to hold onto those memories.
As a kid, I had headaches. I didn't realize that was not "normal". I thought everyone's head felt like mine; it'd hurt on one side of my head and be like that for days. Eventually, I'd end up sleeping it off--usually for an 18-hour block.
By high school, I'd miss school a few times a month. I'd take multiple doses of Advil or Tylenol throughout the day, but it didn't really help. College was even worse. Going to classes in a haze of pain, crashing back in the dorm for hours after. By now, I knew this wasn't normal, but I chalked it up to stress, anxiety and academic pressures.
It wasn't until I was 27 that I could put a name to this. Migraine. My "first" official migraine lasted over 3 months. I went to the doctor, who sent me for a battery of tests, then to a neurologist.
I tried out a variety of abortive drugs and finally settled on Imitrex. But since the migraines were frequent (every three days), my neurologist also started me on preventatives too (propranolol and amitriptyline). I also tried chiropractic and massage to help, as the drug regime was only moderately successful.
The older I got, the worse the migraines became. The preventives were increased, but the effectiveness was not increasing with the higher dose. If anything, the higher doses were sapping my energy and the migraines were sapping my will. I felt increasing over-medicated and still not finding relief.
Fast-forward to 2011, 13 years after the official migraine diagnosis. Frustrated, hurting and having little relief, I was reaching the end of my rope. My friends, worried about the the inability of my doctors to find a treatment plan that worked, went on a mission to find a new neurologist--one that was also a headache specialist. They found me a wonderful physician and set up an appointment for me.
With practically one look, Dr. P determined I had two issues going on; chronic migraine and occipital neuralgia. The two conditions were feeding off/triggering each other, causing a cycle of unbreakable pain. Just hearing that she knew what I was going through, that she had a treatment plan, made me cry. I had felt so alone, isolated and broken that having a doctor validate what I was going through gave me hope.
I started a new mix of preventatives (methergine, gabapentin, lisinipril, paxil), had the first round of Botox and started physical therapy. I had the first break in pain in years.
Unfortunately, it didn't last. We upped the methergine, lisinipril and gabapentin. Continued Botox. Stopped physical therapy and instead added flexiril. Some progress was gained, but still not enough. Gabapentin was dropped, Lyrica added. A little more progress.
I was referred to a pain clinic. I had the first (of seven) third occipital nerve blocks. The blocks brought great relief, even if it was only 3-4 weeks. I had an ablation done (total of two) and it offered about 8-10 weeks of relief.
The occipital nerve is a problem--it feeds the chronic migraines and occipital pain. With only temporary relief from the blocks and ablutions, we need a more permanent solution. Dr. P referred me to another pain clinic, one that performs occipital nerve stimulator (ONS) implants.
I underwent a 7-day trial to test ONS. I had a 90% reduction in pain. For those seven days, I felt like I had a life! One that wasn't hazy, foggy or controlled by my head.
ONS is not for everyone and it's not a cure. But for me, it may be the first tool to offer long-term relief.
Unfortunately, my insurance company is balking at covering the procedure.
So here I am, caught between the rock of chronic migraine and the hard place of occipital neuralgia. I have encouragement based on the trial result and the hope that I will prevail with the insurance company---and maybe that rock & hard place will soon be nothing but a faint memory.
Have you checked out the new Community Hub yet?