I got my Botox treatment today!! Within 48 hours, I won’t be able to raise my eyebrows or wiggle my ears. Never mind that I’ve never been able to wiggle my ears. I’m about three weeks late for this treatment (I forgot to call 6 weeks after the last treatment because I was in Florida and that’s when they get the insurance approval and set up the next appointment, etc.) so I’ve been having two weeks of terrible rebound headaches and the injections were particularly painful this time. Nonetheless, the fact that I rebounded when the Botox wore off is more evidence of how effective the treatments are.
Before I started seeing my current neurologist, I didn’t see a neurologist for several years and was having my family doctor treat my migraines. I knew there was a migraine expert at the referring neurology group, but I had had a very unpleasant appointment with him and he didn’t have anything new to offer for my chronic headache treatment, so my family doctor agreed to manage to my headaches. And things went well during those years. I would occasionally get overloaded on my acute medications and have to stop them and deal with the rebound headaches, but we expected those times.
When my family doctor left and I had to choose a new family doctor, I decided to see someone a few years younger than myself. She recommended a new neurologist who specializes in migraines. He’s so young! Or, I’m so old. In any case, this new guy had me go off my acute medications – again. This time, though, he gave me Botox to try to get through the rebound. I think he thought that once I got through the rebound that the headaches would get a lot better and we could wean off most of my meds. Alas, no. In fact, we’ve maxed out my meds and the Botox. But, I’m in a pretty tolerable place with my headaches. At least, when I have my Botox on board.
The thing I really like about my family doctor and my neurologist is that they take my headaches seriously. I know that sounds kind of crazy. Isn’t their job to take headaches seriously? Here’s the thing: I was in med school in the early 90s and there were certain diagnoses that didn’t get as much “respect” or “street cred” as others. Since there wasn’t much treatment for migraine at the time, people who came in with migraines could have had migraines or be drug seekers. Who could tell? Anyone with a chronic pain diagnosis without obvious physical findings was suspicious. How did we know that didn’t just want drugs, either for themselves or to sell? Yeah, I know. Talk about not having a “therapeutic relationship” with patients.
Med school was also an interesting time for med students in other ways. We were pushed to our limits, physically, mentally, and emotionally. We weren’t to show weakness – and that included pain. If you hurt, you worked through it. I went back to work 3 days after my appendectomy – and my attending physician joked about needing to see the pathology report if I needed to leave early that day (I stayed the whole time).
It was also the time that we were teaching patients about being responsible for their own health through diet and exercise. When someone had heart disease or uncontrolled diabetes, there was an undercurrent that it was somehow their fault. If the patient had just done a better job of things, they wouldn’t have high blood sugars or they wouldn’t need heart surgery. Of course, this isn’t true. Genetics plays as much a role as anything else in these things and plenty of otherwise hale and hearty folks ended up with heart surgery and plenty of folks who ate healthy and exercised still needed help managing their blood sugar.
All of this combined in me to give me this bizarre complex that my headaches are somehow my fault. When I was working, it almost killed me to have a partner have to cover call or deliver a baby because I had a migraine. It is still very emotionally difficult that I’m not working in medicine. I was trained to work no matter what, even if I was hungry, tired, not scheduled, whatever. I don’t know too many MDs who come out of Tulane without good work ethics.
Not only was I not “playing hurt”, but I didn’t even have a “real” disease. Migraine doesn’t have something you can measure easily like blood sugar, so it doesn’t feel “real” to me. Yet, my neurologist is very quick to point out that with today’s imaging, we can see that migraine is very real. We don’t need to do fMRI or PET scanning on everyone with migraine or chronic headaches, but the research is clear that our brains look different when we’re in pain. That’s what I need to hear.
One of the things I work on with my counselor is this feeling that my headaches are somehow my fault so I should somehow be able to fix all this. These thoughts are becoming less frequent, but they still show up, especially when I have a really long headache (which is really odd since you would think I’d be less likely to think I have control over them when they last so long). I don’t know if other people with chronic pain feel the same way or not. I do know that all I can do right now is focus on what I know to be true – I have chronic migraine disease.
And, of course, pray. Lots of prayer. Along with all my other self-care things: exercise, healthy eating, meditation, relaxation, journaling, etc.
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