The Disappointment of Failed Treatments & Rallying to Try Again

I’m really struggling with the migraines right now, both physically and emotionally. It has been eight weeks since I got Botox injections and I’ve seen no improvement in the migraines. They are actually more frequent and more severe than before the injections, though I can’t say whether the Botox made them worse or if it is coincidence. It is always disheartening when a treatment that seems miraculous for many people, like Botox or Topamax, fails. I spent January grieving for the loss of yet another potential treatment.

Intractable does not mean untreatable; it means unruly or difficult (but not impossible) to treat.” It has been five years since I wrote those words. Five years of worsening migraines and countless attempts at treatment that have all been ineffective. Clinging to the promise of finding an effective treatment sometimes feels like an exercise in self-deception.

Yet, here I am, cheered by the thought of a new drug I’m going to try and the treatment possibilities I’m going to talk to my doctor about. I’ve been talking with Hart about my plan to schedule appointments with my headache specialist for every two months and the journal articles I plan to take him on my next visit. Just as the severity of the migraines is cyclical, so is my hope for treatment and the enthusiasm with which I pursue new avenues.

The nature of migraine symptoms contributes to my wavering dedication. Fatigue, lethargy and brain fog make research and phone calls difficult. Sometimes I’m too sick to keep appointments (I’ve canceled three in the last week alone). The accompanying emotional upheaval, including irritability, anxiety, and depression-like feelings, can cause the search for relief to feel fruitless.

So, ten years after a doctor first took my migraines seriously, I continue to search. Here’s what’s next on my plan of attack:

  • Diet: I’ve been following an extreme migraine diet for three weeks. In addition to avoiding tyramine and tannins, as I wrote about, I haven’t been eating any other suspected food chemicals, such as nitrates/nitrates, sulfites/sulfates, caffeine, phenylethylamine (in chocolate), MSG, and aspartame. I’ve noticed no improvement on the diet and my skepticism of food triggers remains. I’ve recently reread ACHE’s excellent article that questions the validity of food triggers and am going to reevaluate my plan.
  • Preventive medication: My headache specialist is sending me a prescription for Sibelium (flunarizine), which is a migraine preventive commonly used in Canada that doesn’t have FDA approval for use in the U.S. (presumably because the company doesn’t want to spend the money necessary to get approved). With side effects of weight gain, lethargy, and depression, I’ve been reluctant to try it. Having spent the vast majority of the last two months in a migraine, I finally decided that if it helps, the benefits to my mental health will outweigh the potential risk. I’m still nervous, though knowing I can just stop taking it (unlike the Botox, which I have to let wear off) gives me a helpful sense of control.
  • Platelets: I know so little about this that I’m a little reluctant to even mention it. Someone on the Migraine Research Foundation Facebook page said that her doctor told her of a patient whose migraines subsided when he donated platelets. I’ve also read anecdotal evidence of people’s migraine attacks stopping when they were on Plavix, a blood thinner. What I’ve learned is that some people have too many platelets, which can cause headaches, and also that platelets “tend to become sticky and release serotonin which is intimately involved in the migraine process.”

In the first draft of this post, which I wrote last week, I said, “I am tired. Tired of being sick, tired of having to claw my way out of bed every morning. I don’t feel depressed in the clinical sense, but being sick is wearing on me.” Since then, I’ve determined that I definitely was depressed, but I also had a migraine reprieve. Over the weekend, my pain reached the low of level 3 and I spent eight hours at a level 4. I was reminded that I don’t always have a horrendous headache and that I’m not always in a migraine attack. A little relief goes a long way in bolstering my spirits. Don’t worry, Mom, I’m once again happy and motivated!