Three people who've lived with chronic migraine discuss what their journey has taught them, from the benefits of exercise to the importance of speaking up for yourself.
Exercise Your Body and Mind
Lindsay Weitzel, PhD, is an author and a podcast/webcast host for the National Headache Foundation.
My earliest memory was a migraine around age 4. I had head pain every day after that, until age 30. It was so serious that it caused me to have something called complex regional pain syndrome, which feels like fire burning down to your bone marrow.
I was a competitive swimmer. I used exercise to keep the pain level down, and to cope mentally and emotionally. By my sophomore year of high school, I couldn’t keep the pain down enough, and competition was impossible. That was a big deal for me -- not only because the exercise helped with the pain so much, but because as a teenager, swimming was such a big part of my identity.
By the time they came out with a medicine that helped me with my biggest migraines, I was 17. When sumatriptan became available, I took it on the days I had tests. It totally turned around my GPA.
Though the migraines were still difficult, I started running -- exercising more on my own instead of focusing on competition. Not only did it boost endorphins (the body's natural pain relievers), but it kept the muscle tension from being so bad. Nowadays, at 46, I still exercise every day. It helps stave off pain.
I wish people knew how debilitating and diverse migraine is. I think people will meet someone who gets migraines and think they can fix it with a medication. But there are so many people whose entire lives revolve around trying to combat the disease.
Every day I get up, get my breakfast, and meditate. I work with people with chronic migraine, and I say you have to build a rock wall: Half the rocks are medication, and half are lifestyle factors. The mortar that holds them all together is your mentality. For me, the meditation is a huge part of that mortar. Migraine causes anxiety, but being worried that the pain is going to come back is one of the things that causes it to come back. I basically just study meditation. I read different books, use different apps, just go with the flow.
Keep Searching for a Treatment that Works
Cindy Otis of Irmo, SC, has had migraines for decades.
My experience with migraines spans 28 years, several neurologists, and many medications. Unfortunately, mine are caused by drastic changes in the barometric pressure, so there’s little I can do to avoid them. My kids called me "Barometer Head" for years.
We lived in the Pocono Mountains for 2 years. The altitude was about 2,200 feet, but the frequency of the fronts moving through seemed to be the big problem. When we moved out of the mountains, my migraines dropped from four per week to seven to eight a month!
Finally, migraine research produced a preventive medication that works for me. It's a monoclonal antibody that I take as a once-a-month injection. Now, I usually have three migraines a month at most. So no more ER or urgent care visits and "lost days" recovering from the effects of all those drugs. When I do get a migraine, I take a powdered nonsteroidal anti-inflammatory drug (NSAID) that you add water to and drink.
I can usually push through the day now. Every once in a while, I just have to go to bed. I've accepted migraines are part of my life and pivot plans as best I can. But I’m really thankful medicine has progressed.
Migraines can be debilitating, and sometimes people are less than sympathetic, often downright dismissive. My best advice is to keep searching for the medicine that works best for you.
'I Vowed That Migraine Would Not Ruin My Life'
Jill Dehlin, RN, chairs the National Headache Foundation’s Patient Leadership Council.
I was 32 when I had my first "3-day headache." I thought it was a side effect from a medicine I was taking. Unfortunately, stopping the medicine didn’t stop the headache.
My attacks are usually on the left side of my head, right above my ear and eye. The pain is searing, burning, throbbing. Migraine attacks are expressed on the 1-10 pain scale, but that doesn’t tell the whole story. My worst pain was like someone had drilled a hole in the left side of my head and poured in some hot acid, then played loud, pounding music and shoved my head into concrete with each beat. Sometimes the pain was so bad, I couldn’t speak.
There were no great treatments for migraine back then, so I took over-the-counter meds. Then, when I switched internists, my new one put me on a beta-blocker as a preventive. It reduced the frequency, intensity, and duration of my attacks. But I couldn’t tolerate the side effects, which included depression. I wasn’t so much sad as just "stuck" and unmotivated. It affected my ability to get my dissertation research going, and ultimately, to finish my PhD.
In November of 2006, I was completely disabled. My internist referred me to a headache specialist. Until 2018, there were no migraine-specific medicines for prevention, just drugs borrowed from other conditions like epilepsy and depression. I tried over 60 different medicines for prevention and used triptans to treat an attack. I felt like a guinea pig.
When I became chronic and had to quit working on my PhD, I vowed that migraine would not ruin my life, that it would just change its trajectory. I’ve done little things to bring me joy. I learned to play the harp, how to take beautiful photos with a camera. I love being out in nature. I have a very active Portuguese water dog, and he gets me outside and exercising.
Along with medicines, relaxation exercises, biofeedback, and cognitive behavioral therapy have been a great help. Anxiety and depression are common among people with migraine. I also use a nerve stimulation (neuromodulation) device designed for migraine.
I want others to know how common migraine is: 18% of females and 6% of males have it. It’s largely hereditary, and there are migraine-specific preventives that are quite effective. People having 4 or more days per month of migraine disability should consider getting on a preventive medication. If the side effects are intolerable or if the drug doesn't reduce your attacks by 50%, speak up. Try something else. Don’t settle.
If you feel like your doctor isn’t listening or not treating your migraine seriously, let them know. They can’t read your mind. If you’re not satisfied with your care, fire your doctor and find another who knows more about migraine. Also, being part of a migraine support group is invaluable. Others with migraine have been on a similar journey, and they "get it."
I participate in what I call "everyday advocacy." I have a purple streak in my hair. When I’m out in public, people often comment about it. I tell them purple is the color for migraine advocacy, that I’m a nurse with migraine, and then ask if they have any questions. It gives me a sense of purpose to help others.
Lindsay Weitzel, PhD, author; podcast and webcast host, National Headache Foundation; scientific liaison, Association of Migraine Disorders; founder, MigraineNation Facebook group, Denver, CO.
Cindy Otis, Irmo, SC.
Jill Dehlin, RN, chairperson, National Headache Foundation’s Patient Leadership Council; board member, Coalition for Headache and Migraine Patients and the Alliance for Headache Disorders Advocacy, Lansing, MI.