Site icon Kathryn McClatchy

Migraine is (still) no joke

The Fifth Annual Migraine World Summit is winding down. This is my fifth year to participate online, and once again I have come away inspired, encouraged, and armed with updated information from leading doctors, researchers, and advocates. Comedian and writer, Whitney Cummings–author of I’m Fine… and other Lies, and swimmer and four-time Olympian, Amanda Beard–author of In the Water They Can’t See You Cry, joined experts the first night to kick off the ten-day summit. Both women are migraineurs who have struggled coming to terms with migraine, and have learned a lot of coping strategies to allow them to work their way to the tops of their professions.

Many of you know my story, so I won’t take time to tell it here. If you are new, here are some of my past migraine-related blog posts:

Many people who don’t have migraine, and perhaps many who do, don’t realize how debilitating and how serious a disease this is for a few reasons: 1) there are at least seven to ten different types of migraine, 2) there are four distinct phases of a migraine attack, and depending on the type of migraine some or all phases may be present, 3) migraine exists on a continuum or spectrum, so some with the disease may experience mild episodic attacks while others may live with chronic debilitating and frequent attacks, and 4) those of us living with migraine fake being healthy and do amazing things to compensate for this disability. Number 4 is what I want to talk about today.

If you Google “living with migraine,” “migraine management,” or “compensating for migraine disease” you will find more research (some fabulous, some outdated), opinions, doctors, migraine warriors, and old wives’ tales. This is one of the reasons the Migraine World Summit is so important. It brings together the leaders in all facets of migraine research and treatment, many of whom are #MigraineWarriors themselves, to learn what is now known, who to talk to about what, how to manage the disease, and where to find community and advocacy opportunities. Migraine has been known and written about since the ancient Egyptian hieroglyphics. but sadly has been the butt of many jokes for about 200 years since a French doctor spread some bad information. 

Migraine Warriors are NOT seeking attention, trying to get out of work, hysterical, making it up, lazy, or undisciplined. Migraine affects people of all ages, socioeconomic backgrounds, gender, and ethnicity. Although, migraine affects more women than men, it is not just a woman’s hormonal problem. And, here’s a big misunderstanding: Migraine is NOT just a bad headache. Migraine is a systemic disease that affects the entire body, and headache is just one symptom. If you have a really bad headache, and no other symptoms, then you have a headache. If you have the four phases, which may include things like heightened sensitivity to sound, smell, light, and touch, nausea, vomiting, diarrhea, brain fog, difficulty speaking/aphasia, tingling on one side of the body, visual disturbances, Alice in Wonderland syndrome, vertigo, dizziness, weakness, fatigue, and/or insomnia, you probably have migraine and should see your doctor. Untreated migraine can get worse, and Migraine with Aura is a risk factor for stroke (it was my main risk factor prior to surviving five strokes before my 40th birthday).

So much has been learned about migraine in the last decade, including that it is genetic, and at least 64 separate genes are involved which is why there is so much variety in how migraine affects each migraineur. Until recently, the only medications prescribed for migraine were actually developed for other diseases and accidentally discovered after the fact that they maybe kinda’ helped with migraine. The new anti-CGRP drugs released in 2018 are the first to specifically target the genetic makeup of migraine, and are taken as a preventative. (By the way, I have been one of the grateful recipients of the third generation of that drug, Emgality, for the last year, and it has given me about 50% more control over my chronic migraine attacks). In the past few months, two new classes of migraine abortive drugs have been approved and released in the US, ditans and gepants. (My doctor just prescribed Reyvow, a ditan, for me three days ago, and I’m anxious to see if it will work for me.)

In an effort to shed some light on a situation where most sufferers are literally hiding in the dark, let me list some ways migraine warriors compensate for this disease so that we look normal and fake being healthy, and consequently may add to the confusion:

OK, there it is. If you or a loved one know other ways to compensate or fake being healthy, I would love to know, so please leave a comment. Additionally, you can be an advocate by helping change how you talk about migraine, and by sharing the facts. I’ve given you many great resources hyperlinked through this post. To learn even more about migraine, please check out the National Headache Foundation. And please remember, #MigraineIsNotAJoke.

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