What People With Migraines Want You to Know
Chances are if you don't get migraines yourself, you know someone who does. More than 12% of people in the United States—about 38 million—suffer from migraines. How does this condition affect their lives? How can you help if you have a friend or family member with migraines?
Here’s what three real patients want you to know about living with migraines.
1. The pain can be excruciating.
If you've had a bad headache, you may think you know what a migraine feels like. Not so, says Lynn Voedisch, a Chicago writer who has battled migraines for 30 years.
"The pain is unbelievable, it's way worse than having a baby," she says. "You feel like your head is going to cave in. I don't know how many times I've told my husband to just shoot me—I can't take it anymore."
Not every migraine feels this way. Carrie Garcia Hudson, 37, a Texas attorney, says her “10 on the pain scale” migraines only happen every couple of months, with the rest of her frequent migraines varying from up and down the pain scale.
Also, some pain-relieving drugs can cause dependency and rebound migraines, meaning you wind up having more frequent and more painful migraines as a result of medication overuse. For this reason, their use is recommended no more than nine days per month, making them more suitable for people with episodic rather than chronic migraine.
2. Migraines bring more than just head pain.
Nausea, vomiting, and sensitivity to light, sound and touch are some of the common symptoms beyond head pain that people may feel—a cascade that leaves many feeling incapacitated.
Before the migraine kicks in, some people have warning symptoms. Brad Rogers, 32, a Presbyterian minister in Rockford, Ill., is one of the 15 to 20% of migraine sufferers who experiences auras before the head pain hits. Auras can be visual or involve other senses. They usually last no more than one hour.
Rogers’ auras are visual and start about 30 minutes before the migraine: “It’s like when you look at the sun and look away. It's a spot in your vision,” he explains. The spot spreads, sometimes entirely blocking his vision.
3. You don’t quickly get over a migraine.
Just because your medication stops the full force of the pain, you’re usually not ready to pop up and go about your business, says Voedisch.
“You feel weak, your head feels kind of smushy, you’re disoriented,” she says. This can be a result of the medication or the migraine–or both. “You can’t just jump back into things.”
It can take a day of quiet at-home activity before she’s ready to get back out into the bright and bustling world again.
4. It’s hard to work when you have a migraine.
Imagine arguing before a jury or preaching to a congregation–and having a migraine hit. Hudson says adrenalin kicks in during trials to keep her migraines in check. But afterward, she is prone to them. (She had migraines after her first 20 trials; now they happen about half the time).
Medication helps, plus she is able to leave early if needed. She also replaced migraine-triggering fluorescent lights. But the stress of the job is difficult to avoid, and that’s a trigger for her.
Rogers, too, has had migraines while on the job, including on Sunday mornings. “By the grace of God, I’ve been able to work through them,” he says.
But sometimes migraines are so frequent and debilitating, they make regular work impossible. Voedisch works from home as a freelance writer. “I couldn’t see any employer taking me on. I wouldn’t know when I could come in,” she says.
5. I might not be able to commit to plans.
Hudson’s migraines are often triggered by heat, so hot summer weekends in Texas are a challenge for her. She is reluctant to commit herself to activities with friends and family.
If she does show up, she says, she asks that loved ones “be understanding about my limitations. I might not be able to drink and stay out late.”
6. What causes my migraines changes—and so does what helps.
Over the years, Voedisch has tried many migraine remedies, from medications to Botox injections, and has been hospitalized for intractable migraine. Treatments will work for a while, then stop working.
She’s recently found relief by using a trigeminal nerve stimulator called Cefaly, a headband-like device she wears on her head 20 minutes a day (which preliminary studies have shown may be effective for some people). Voedisch says instead of getting three to four migraines a week, she now gets them once a week or less.
Hudson, too, has tried many remedies, including medicinal marijuana, massage, and yoga (which “worked amazingly—then stopped”). Her triggers also shift. These frustrating changes can be difficult for the people in her life to understand, she says.
“I think friends and family want to fix things for you, but that may not be possible. They need to be sympathetic.”
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- Migraine Fact Sheet. Migraine Research Foundation. http://www.migraineresearchfoundation.org/fact-sheet.html
- Migraine headaches. Cleveland Clinic. https://my.clevelandclinic.org/health/diseases_conditions/hic_Migraine_Headaches
- Cefaly for Migraine Prevention? American Headache Society. http://www.achenet.org/resources/cefaly_for_migraine_prevention/