What It’s Like to Deal With Chronic Migraines
Key takeaways:
Chronic migraines can greatly affect daily life — disrupting routines, plans, work, and play.
To manage chronic migraines, many people take a comprehensive approach, focusing on prevention, treatment, and lifestyle changes.
Here’s how three people with chronic migraines manage their symptoms every day.
Elizabeth Essner remembers 2003 as the year her migraines spiraled out of control.
It was also the year of the California recall election that put Arnold Schwarzenegger in the governor’s mansion. That detail sticks in Elizabeth’s mind because she was so ill with meningitis that she couldn’t leave the house to go vote.
After the meningitis, her migraines were no longer manageable. “I had migraines virtually every day,” she says. “I was incapacitated. I ended up getting on disability for about 10 years.”
Elizabeth, now 63, lives in San Jose, California, and works 4 days a week as a mental health therapist. She says a regimen of onabotulinumtoxinA (Botox) and erenumab (Aimovig) injections has given her a life with only occasional migraines.
Elizabeth has had headaches since she was a child. But she wasn’t diagnosed with migraines until college, when her headaches would sideline her a couple of times a month. She’d take acetaminophen (Tylenol) and lie in a dark room with a washcloth over her eyes, until the pain eased. “I remember feeling like I just wanted to cut off part of my head and somehow relieve the pressure,” she says.
As she got older, her migraines increased to about once a week. But she could handle them with sumatriptan (Imitrex), a medication that constricts blood vessels in the brain to relieve headaches.
That’s until she had meningitis — an inflammation of the tissues surrounding the brain and spinal cord. After fighting off the illness, Elizabeth went from specialist to specialist, desperate to put an end to her migraines. A nerve block didn’t work, and neither did ablations near her occipital nerve.
Eventually, Elizabeth found a migraine specialist who recommended Botox injections every 12 weeks. “It cut my migraines down from maybe 26 a month to maybe 15 a month,” Elizabeth says.
Her doctor also prescribed her Aimovig, a monthly self-injection that blocks a protein associated with migraines, calcitonin gene-related peptide (CGRP).
Even though she was glad to have access to Botox and Aimovig to get relief from her symptoms, Elizabeth was worried about the cost. “I was very nervous that my insurance was not going to approve them both, but they did. And I literally have almost zero migraines now,” she says.
Elizabeth still avoids perfumes and strobe lights. If she feels a breakthrough migraine coming on, she’ll take Tylenol and drink a cup of coffee. If that doesn’t work, she takes ubrogepant (Ubrelvy), a CGRP receptor blocker.
Elizabeth’s recommendation for people who struggle with headaches is to see their providers to talk about what treatments might work best.
“I think a lot of people with headaches don’t realize they’re [having] migraines,” she says. “It doesn’t have to be on one side of your head. It can manifest in different ways. It’s important to be evaluated.”
A doctor’s holistic approach includes yoga and mindfulness
Huma Sheikh didn’t realize her headaches were migraines until she started her neurology residency.
She says the stress of medical school — combined with too little sleep and too much coffee — would trigger headaches. And those headaches would force her to stop studying and go home to lie down.
The “throbbing” pain tended to concentrate on the left side of the back of her head and “kind of travel forward,” she says. Sometimes, she’d experience pressure that was so intense that she’d tie a scarf tightly around her head to relieve it.
Still, she didn’t think her headaches were migraines because she’d rarely get nauseous. It wasn’t until she treated other people with the condition that she realized her symptoms, which included sensitivity to light and noise, were in fact from migraines.
“Light was a huge issue,” Huma says. “And I would get very irritated if people were talking to me, because it felt like they were screaming. I realized later that they were talking normally.”
She found that she could ease her symptoms by taking Tylenol or ibuprofen (Motrin). With these over-the-counter pain relievers, she was able to push through challenging days during her medical rotations, despite the busy and noisy environment.
Huma is now a 41-year-old headache specialist practicing in New York City. She helps people manage their migraines with medication, yoga, and mindfulness, taking a whole-body approach. And she says most of her patients are women in their reproductive years — the group most commonly affected by migraines.
Yoga, in particular, is one strategy that has been effective for both Huma and her patients. “Stretching the head and neck by doing yoga, I have found to be really helpful,” she says.
She also suggests wearing blue-light-blocking glasses while working on a computer, and taking breaks every hour to stretch and look away from the screen.
Huma says she rarely gets migraines now. When she does, it’s usually around the time of her period, especially if she needs sleep or is stressed.
She has a full roster of migraine medications
Kelly Amspacher has chronic and vestibular migraines. A clinical nurse specialist by training, Kelly is not working and receives disability because of her condition. She takes nearly a dozen medications to prevent and manage the pain related to her migraines.
Even with aggressive treatment, Kelly says, she has a constant, low-grade migraine at all times. And, at times, it flares and becomes more intense. “I hate to see where I’d be without these medications,” she says.
Kelly, who’s 62 and lives in a Philadelphia suburb, remembers having migraines as early as 5 years old. “It felt like my head was going to explode. I had to be in a dark room, and I was vomiting,” she says.
Starting in her early childhood, she would get debilitating migraines that would last about 48 hours every couple of months. Even though she had classic migraine symptoms, she didn’t get a correct diagnosis for two decades.
“I wound up in the emergency room at my local hospital with a migraine,” she says of the episode that finally led to her diagnosis. “I thought I was going to die; I thought I’d had an aneurysm. That’s how bad my head hurt.”
The emergency room resident called a neurologist. And the neurologist, who said she also suffered from migraines, prescribed Kelly Fioricet with Codeine. But Kelly, who was already working as a nurse, couldn’t take a controlled substance while on the job. So she powered through without it, taking care of premature babies and women with high-risk pregnancies.
“I would kind of hide in my office when I could. I’d turn out the lights,” Kelly says. At the time, she was also studying for a doctoral degree and was the mother of a toddler.
Eventually, Kelly’s episodic migraines became chronic and she was no longer able to work. She now takes a regimen of six preventatives and medications for breakthrough migraines. Her insurance covers about 75% of the costs, she says, leaving her with a monthly bill north of $750.
She also copes with pain using a strategy that her headache specialist — whom she calls a “gift from God who truly cares about my quality of life” — taught her. It involves Kelly expressing her feelings in order to reduce her anxiety. “We know that stress exacerbates migraine, and that helps release stress,” Kelly says of the approach.
Biofeedback therapy, which Kelly does for 15 minutes once or twice a day, has also proven to be valuable. She uses a computer program that shows her her heart rate and breathing in real-time, which helps her slow down.
Because of her migraines, Kelly, a former marathoner, has given up running. She also avoids loud noises and strobe lights. “My daughter wanted to take me to a concert,” she recalls. “I was like, ‘Honey, I love you, but no.’”
Her main trigger seems to be a change in barometric pressure. “There are days when I am on the couch with an ice pack on my head and my dog lying with me,” Kelly says. “He knows when I’m not feeling well.”
When the weather’s right and her pain is moderate, however, she takes long walks with her basset hound mix, Roland. “I love photography,” she says. “When I’m able to concentrate and have clear vision, I go around our neighborhood and take pictures.”
What does the doctor say?
Patricia Pinto-Garcia, MD, MPH
Medical Editor
Migraines are the result of a complex neurological condition that causes severe headaches and other symptoms. Anyone who has ever had a migraine knows that it can derail your entire day. And while having the occasional migraine is bothersome enough, about 3% of all migraine sufferers have chronic migraines — meaning, they have about 15 headache days per month.
Studies also show that between 1% to 3% of people who have occasional migraines transition to having chronic migraines each year. So, if you experience the occasional migraine, your chances of developing chronic migraines over time is relatively high.
It’s possible to manage a one-off migraine with Tylenol or ibuprofen. But if you get migraines frequently, talk to your healthcare provider. Taking over-the-counter pain medication too often can actually make your migraines worse, and your provider can help you develop a more useful migraine treatment plan. There are new prescription-only medications, including calcitonin gene-related peptide (CGRP) antagonists, that have been shown to be effective at treating and preventing migraines.
You can also consider visiting a headache specialist. These providers may be more comfortable prescribing newer medications and recommending alternative therapies. Many people find that combining complementary therapies with medications helps reduce headache days even more.
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