5 Women on What It Really Feels Like to Have a Migraine
About one in four women will have a migraine attack in their lives, according to the American Migraine Foundation, and in extreme cases, as many as 15 times a month. Having migraines this frequently is classified as chronic migraine, meaning you have a migraine more often than not, according to the AMF.
Survey respondents reported having to miss birthdays, graduations, and work due to the condition–and some felt they were skipped over for promotions.
We spoke to five women with chronic migraine to find out what it really feels like. Here are their stories.
“I’m generally between two and four on a pain scale, but twice a week I go to six to eight.”–Rachel Koh, 47, Southlake, Texas
Koh has three numbers she keeps track of every day. One is her pain. “I’m generally between two and four on a pain scale, but twice a week I go to six to eight,” she says. A two or three feels like a “twinge or pulsing,” while the higher numbers bring a throbbing, stabbing pain that takes over her whole head.
Then there’s the nausea scale and the scale for mental acuity. “I’m best in the morning, but by the end of the day, you can’t count on me for anything,” says Koh, whose migraines forced her to give up her job as a Fortune 100 executive. “I have short-term memory loss, brain fog. I don’t drive. Sometimes I can’t string a sentence together.”
She also lists among her migraine symptoms hypersensitivity to light, sound, and smells, as well as diarrhea, fever-like symptoms, and clumsiness.
“I don’t have a life that anyone would envy,” says Koh, who estimates she has about two pain-free days a year. As for childbirth? “I would sign up for that 10 times a year to get rid of what I have every day,” she says.
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“I get really nauseated, and I vomit. I’m very dizzy. I’m really fatigued, but I can’t sleep.” –Michelle L. Tracy, 33, Amherst, Massachusetts
Tracy’s first migraine attack happened when she was 19. It made her so ill she wasn’t able to stand up or stop vomiting. She went to the emergency room, where doctors and nurses got the pain and vomiting under control so she could go home. Within 24 hours she was back again with the same excruciating symptoms. After that, she estimates she was at the emergency room about three times as week.
Thanks to a dedicated healthcare team, things aren’t nearly as bad as they were, but Tracy still has daily migraine attacks, half of which are severe. Often, they consist of intense pain on the left side of her forehead and in her neck and shoulders.
“I get really nauseated, and I vomit. I’m very dizzy. I’m really fatigued, but I can’t sleep,” says Tracy. “I’m incredibly sensitive to light and sound and smell in ways that would seem ridiculous to other people.” For example, she put tape on her air conditioner and alarm clock to cover the digital numbers so they don’t bother her.
The chronic condition meant Tracy had to give up her dream job as a preschool teacher. She now lives with her parents and does freelance writing. “It’s wonderful that I have that option, but I didn’t imagine being a 33-year-old woman living with her parents,” she says.
“All I am is pain.” –Eileen Brewer, 40, Columbia, Maryland
Brewer’s first attack came after a bout with spinal meningitis when she was 5. After that, migraines came “just occasionally, once a month sometimes, or once or twice a year,” she says.
By the time she turned 15, though, she was having 15 a month. “I started to miss school because of the pain and not being able to see,” she says. “A lot of time I’d go to school anyway but couldn’t see out of my eye because of the flashing lights.” Brewer estimates she missed 60 or more days of her sophomore year.
As an adult, different medications and strategies have helped, but she hasn’t had any treatment for the past seven years because she’s been either pregnant or breastfeeding. “There are some days it is excruciating. All I am is pain. I spend a lot of nights sleeping on the bathroom floor because I’m sick to my stomach and my head hurts,” she says. “Other days I can think around the pain.”
Now that she has weaned her youngest baby, Brewer hopes going back on treatment will improve her symptoms.
“I don’t like going to the emergency room. Only if I’ve be throwing up for more than six hours.” –Carly Kilby, 36, Tifton, Georgia
“I would give birth a 100 times before getting a migraine,” says Kilby, who had her first attack at 16. An enduring memory from her high school prom: Throwing up in the front yard of the photographer’s house.
For years, Kilby took pills to control her symptoms, which didn’t help much: She got so nauseous, she threw them up. In fact, she threw up so much that she frequently ended up in the emergency room because she was dehydrated. “I don’t like going to the emergency room,” she says. “Only if I’ve been throwing up for more than six hours.”
Once, Kilby thought she was having a stroke. “I couldn’t even get my body to function. I was trying to get upstairs to check on my son and couldn’t get my feet and arms to move, everything was so heavy,” she said. “My speech was slurred.”
It was migraine again. Now, she takes an injection migraine medication and uses Botox shots to reduce her migraine frequency, if not severity.
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“I have to always be doing something to take the focus off of the pain.” –Katie M. Golden, 36, Santa Monica, California
Like Brewer, Golden started having migraine attacks at 5, but fewer than 15 days out of the month. They continued into her 20s, about once a month or less. She once went a couple of years without one, until January 2011, when a migraine came and basically never went away.
“I would get an aura and then within 20 to 30 minutes, the head pain would be unrelenting for four to five hours. I was nauseous, sensitive to the light. I couldn’t drive. Sometimes I’d be stuck at work or I’d be in the middle of shopping.” She started forgetting important details from work meetings and eventually left a job she loved and took disability.
After her migraines became chronic, Golden worked for a year with a professional trainer just to walk half a mile again. Once she finally accepted her new normal, she started writing and advocating to raise awareness for chronic migraine disease on her website and blog, Golden Graine. Having the condition influenced her decision not to have children, she says.
She wakes up every day with head pain, but nighttime is the worst. “I can’t sit still. The pain is high. I have to always be doing something to take the focus off of the pain,” Golden says. There can be days, weeks, even months when she doesn’t leave the house because of her symptoms.