The best way I can describe my migraine prevention management is that it’s somewhat like a dark roller coaster. It’s a roller coaster because of the ups and downs, which can be quick and dizzying. It can be dark because I never know when something may change, and I’ll find myself back to chronic, debilitating migraines.
My first migraine was when I was six years old. They presented some problems during my school and college years as well as my earlier years working full-time. By the time I was in my early 30s, they were frequent enough that I needed preventive treatment. In my early 40s, the preventives stopped working, and my migraines transformed from episodic to chronic migraine that caused me to be unable to work and pretty much took over my life.
After over four years of working with a migraine specialist, my migraine were finally well managed. They were, in fact, so well managed that I was experiencing only about one migraine a month, and it was easily treated. Unbelievably, that continued for about eight years, before the roller coaster took a sudden and deep dip. Dr. David Watson, my migraine specialist, has commented on this change a few times, saying, “Only you would make yourself sick trying to get healthier.”
What happened was that I turned my focus strongly toward controlling my glucose levels (I have type 2 diabetes.). In doing so, I lost 85 pounds. This was all under my family doctor’s supervision, and I was seeing him once a month. All was fine until I found myself just not feeling “right.” I was never hungry or thirsty, but always sleepy. When I went to see my family doctor about this, my diastolic blood pressure (lower number) was just 35. Until he told me that he was concerned that if I went home and went to sleep, I might go into a coma, I had no idea how serious it was.
After a few days in the hospital with tests being run and taking none of my medications, the answer was that my body had suddenly responded to the weight loss, rather than gradually, and that the three medications I was taking that affected blood pressure were the issue. Two of the medications were discontinued, and the dosage of verapamil ER that I was taking was cut in half. Uh oh! The verapamil and the beta blocker I’d been taking had been prescribed for both high blood pressure _AND _ migraine prevention.
Within a month, my migraines were chronic again. Dr. Watson prescribed zonisamide (Zonegran) for me since it had worked before. We ran into a rather common problem. It had worked before, but it didn’t work the second time around. In November of 2012, I ended up with 25 migraine and headache days. Dr. Waston suggested Botox and administered the first treatment in December. The first treatment helped, and the second one (90 days later) helped even more. Still we looked for better answers. I’d been taking an antidepressant for both depression and migraine prevention, the same one for at least 10 years. Dr. Watson changed it to another one. Thankfully, that helped too.
Now I average about six migraines a month. Thankfully, they respond well to acute treatment. Another plus from the Botox is that I’m not as sensitive to light between migraines. I usually lose hours to migraines instead of days. For all of this, I’m extremely thankful.
Still, I can’t quite feel that I’m off the dark roller coaster ride. There will probably always be that fear of a time when these preventive treatments stop working, and my migraines transform from episodic to chronic again. That’s just the way it is, and it’s something I have to live with. To make it a bit easier to live with, I stay active in the migraine community in several ways:
- Continuing to learn all I can about migraine and migraine treatment, then sharing that information with others.
- Advocating for more research and better treatments.
- Working to raise public awareness about migraine disease so people who don’t have migraines will understand more and, hopefully, realize that migraines aren’t “just headaches.”
Where are you with your migraine prevention and management? Please feel free to leave a comment below to share with us or just to comment in general.
_Please join us for the 2015 AHMA Patient Conference on June 21, 2015. _
Teri Robert is a leading patient educator and advocate and the author of Living Well with Migraine Disease and Headaches. A co-founder of the Alliance for Headache Disorders Advocacy and the American Headache and Migraine Association, she received the National Headache Foundation’s Patient Partners Award and a Distinguished Service Award from the American Headache Society. Teri can be found on her website, and blog, Facebook, Twitter, StumbleUpon, Pinterest, LinkedIn, and Google+.