My grains of truth about migraines (get it?)

I am so lucky to have the family and friends I do. Whenever someone happens to read or hear about a treatment for migraines, they send it my way.My brain on migraine.

If you had asked me a few years ago what a daith piercing was, for example, I would have guessed a new Star Wars character.

While I’m very grateful for people trying to help, part of me wishes when I wake up in pain, nauseous and sweating, that I could touch someone for just a few seconds so they could feel the perfect storm happening in my body.

Here’s my worst case scenario: the pain my head, neck or face (and it moves around) is piercing. I cannot think. I’m nauseous and throwing up. I break out into a cold sweat — dripping as if I just walked out of a pool — and shaking. My hair hurts. Sounds hurt. Light hurts. Touch hurts. All I want to do is lay on a bathroom floor and press my hands into my head as hard as I can to hold the dark evil back.

This has happened to me at school and at work, in the middle of the night, while traveling. As I told I new psychiatrist I’m seeing to help me use cognitive behavioral therapty to prevent or deal with attacks, I’m held hostage by my own body.

There are signs I watch to know when the storm is coming: I yawn more. I bump into things, mix of words, make typos, feel more tired than usual. But they are easy to miss when I’m running around doing too many things.

Sad to say, but a daith piercing lacks The Force needed to hold any of that back. (Oh, it also lacks scientific evidence that it works.) Over 36 million people in the US struggle with migraines. If daith piercings worked, believe you me, you’d see them on nearly everyone.

Migraine is more than just a headache; it is a major disabling neurological disease.

Migraine has no cure. Let me say that again: MIGRAINE. HAS. NO. CURE.

Not yet anyway. Partly that’s due to the complexity of the human brain, partly to sexism in medical research (especially migraine), and partly because drug companies have made more money elsewhere, like selling Viagra. None of us have all the same triggers or symptions. So what works for you may not work for me, and vice versa.

All you can do is try to lower your individual threshold at which you tip over into a migraine attack — and carry around an arsenal of abortive meds for when you do.

(If you want to dig into the science of migraine, here’s a great presentation from the neurologist I’m lucky enough to be treated by, Dr. Christy Jackson of Scripps. I met her at a dog park. It was meant to be.)

I’ve never catalogued everything I’ve tried or am using now to manage my chronic migraine, but here goes:

  • Preventative meds: Botox injections every 12 weeks, SPG trigeminal nerve blocks, occipital nerve blocks, anti-depressants like Cymbalta, beta blockers, amitriptyline, nortriptyline, riboflavin (B vitamins), magnesium (citrate, oxide, etc.), Feverfew, Butterbur, Coenzyme Q-10.
  • Preventative treatments: chiropractice care, acupuncture, massage,
  • Abortive meds: Aleve; lots of triptans, both pills and self-injectibles (Imitrex, Relpax, Treximet); Toridal injections; migraine infusions; peppermint and eucalyptus essential oils; eye and neck com presses from the freezer; standing in ice. I had one neurologist tell me to throw all Exedrin Migraine in the trash because it’s caffeine and leads to rebound headaches.
  • What I hope to try next: fremanezumab and erenumab (coming out in 2018); electrical stimulation.

productmockupThe emails about new diets and the Facebook postings about daith piercings are incredibly thoughtful. But they have gotten me thinking about how many times I have given unsolicited advice to people struggling with chronic issues I’ve only heard about in passing. I bet they cringe inside just a little at my ignorance, and I don’t blame them.

My grain of truth this week is this: thank you for caring enough about me to send me new prevention tips to try. If I get testy with you, please forgive me.