50% is still failing

failingIn school, answering 50% of the questions correctly, earned you a failing grade. In fact, most of the time you needed to answer at least 70% correctly. As a perfectionist, I tried to get at least 90% correct. All those As on my report card felt satisfying. Most colleges require at least a C+ to B average just for admission.

Imagine if we judged the effectiveness of migraine treatments the same way.

Right now, responses are so poor that a treatment is considered successful if at least half the patients see a 50% improvement in the frequency and severity of their attacks. Our measuring stick for success is failure.

Individual differences affect outcomes and that’s just the way science works. It’s just too bad we can’t do better. This recovering perfectionist is getting really tired of seeing the same 50% on my migraine report card at every checkup. Over and over again, each month is the same as the last. Is a 50% reduction from baseline really all that can be expected? Am I doomed to live with 10-12 attacks per month indefinitely?

That’s not progress. It’s called “getting stuck.” It has to get better than this.

“Yes, but you were so much worse just a year ago.” my loved ones say.

That’s true. It’s been over a year since I’ve seen the inside of an emergency room or hospital. There’s been no need for prednisone either.  Yet every day, three times a day, I swallow a handful of pills in the hopes they will keep the migraines away. Every month I get the same damn results. Sometimes it seems like an exercise in futility.

  • Take the pills to prevent attacks.
  • Get an attack anyway.
  • Take the pills the stop the attack.
  • Watch the triggers because apparently the drugs won’t protect against them.

When do I finally get to stop reading labels, wearing sunglasses indoors,
and guarding all my senses against the onslaught of life?

Apparently that’s a luxury migraineurs don’t get to enjoy. No, 50% is not good enough. A real treatment will actually prevent at least 70% of the attacks AND protect against accidental trigger exposure by providing a layer of protection for my hypersensitive brain.

That’s why many of us are anxiously awaiting the arrival of CGRP-blocking antibody medications. Early studies demonstrate that these new drugs have a 65% or better success rate. At least they’re in the passing range now. What’s even better is that there are no pills to take — just an injection a few times each month. It will still be a few years before these drugs are available to patients and they will be terribly expensive.

I’m familiar with expensive treatments. Botox was $600 each time even with insurance. Zomig was almost $30 a pill and Topamax would easily run me almost $200 a month. As it is now, it costs me over $300 a month on prescriptions even with insurance and coupons. If I could replace all of that with one injection, it would happen in a heartbeat. All those drugs have caused a 40 pound weight gain that even with exercise and a clean diet won’t budge. They have also caused GERD and RLS. If a single injection could stop all of that, I would gladly take it.

The wait itself is painful. One day soon there will be an announcement that one of these new treatments finally arrives on the market. I promise to be at the head of that line. A 65% improvement means going from 2-3 attacks per week down to one a week. With even better results, I might actually get to find out what life is like without migraine.

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