Migraine remain misdiagnosed and under treated despite there being nearly 40 million migraineurs in the United States. Lisa Smith tells us why.
With nearly 40 million migraine sufferers in the U.S., you’d think getting proper treatment for the disease would be a snap. However, migraine is still widely misdiagnosed and under treated. Systemic obstacles in the medical business and misunderstandings in the world at large get in the way.
I know this topic well as a chronic migraineur myself (someone who would be in pain more often than not without adequate treatment). Thankfully, I’m one of the lucky ones with a great medical team, social support, and access to care and information. But if you or someone you know is still fighting for better care (or hasn’t even gotten a diagnosis yet), it may help you to know what things are getting in the way.
Most MDs get a whopping four hours of instruction on headache disorders in medical school. Even neurologists may get more instruction and experience in seizure disorders, MS, or other illnesses than they do in migraine. When you finally ask your doctor about the recurring headaches you have, they may not give you optimal help because they aren’t aware they’ve been under-educated.
There are about 500 headache specialists in the U.S. Divide that by nearly 40 million patients and you have one specialist for every 80,000 migraineurs. If you live in a major metropolitan area with teaching hospitals, you may find a specialist easily (if you don’t mind waiting for months to get in for an exam). But if you’re in a less populated area with sparse medical care, you may have to choose between hit-or-miss care and excessive or expensive travel.
Insurers often demand that doctors implement step therapy. This is a practice of trying older and less-expensive medications first, then only allowing more expensive treatments after those treatments have failed. Thus its other name; “fail first therapy“. These older, cheaper medications might work wonderfully for your sibling, but badly for you. Or they may help, but they clobber you with such intolerable side effects that you can’t function as your old self.
I have personally experienced the “joys” of serious weight cycling (up and down in a 50-pound range). There are also profound cognitive impacts from aphasia (language impairment) to memory loss (what I refer to collectively as “the stupids”). I have experienced mood and personality changes, crippling insomnia or constant fatigue. This is likely because the medications on the market for migraine in early 2018 are all hand-me-downs from other diseases and disorders.
If you can find a migraine specialist, and that specialist’s experience and wisdom suggests that Treatment X is right for you, your insurer can still put you on a medication of their preference. An ethically-murky practice called non-medical switching.
Patients with headache disorders still suffer from a great deal of stigma among family members, friends, employers and colleagues. People lose family-support, jobs and other opportunities to improve life for themselves and their loved ones. Although the systemic obstacles contribute to the continuing stigma, the negative image surrounding migraineurs as “drama queens” or fakers is its own obstacle.
If you’re having trouble with headaches that don’t respond to OTC treatments, it’s not your fault. Us veteran migraineurs have tips for you. I’ll share those and more stories of the migraine wars in articles soon to come.
Lisa is a longtime migraine patient and dedicated advocate for her fellow migraineurs and other patients. After a career in New England radio, she spent several years as a writer and video producer for governmental and non-profit organizations. A graduate of the College of the Holy Cross, Lisa lives in the Boston area and collects as many adventures as she can, such as interviewing Grammy-award-winning musicians, engaging with wild snow monkeys in Japan, and developing her cosplay skills.