Key takeaways:
Joe Coe knows the power of speaking up about the challenges of an invisible chronic illness.
He lives with chronic migraine pain, and he says that what may work for one person may not work for another.
He has become an advocate for migraine patients, helping others find a community and resources.
Our Medicine Cabinet series explores what real people keep on hand and consider essential for their particular needs — even if a doctor didn’t prescribe it.
Joe Coe has dealt with migraine attacks for 20 years. For him, it was normal to have headaches almost daily. He’s tried nearly every supplement and alternative solution for pain that he could think of.
“While I wasn’t having migraine attacks every day, I had a mild headache almost every day,” he says of the last several years. “And still to this day, I’m somewhat surprised when people tell me that they either don’t have headaches or it’s not normal to have a headache every day.”
Today, at 36, he is a migraine patient advocate. He hosts a podcast about living with migraines, called “Talking Head Pain.” He’s also the co-host of a long-running CreakyJoints Twitter chat.
He encourages people who have chronic migraine pain to advocate for themselves.
“You deserve to be heard, respected, and feel well,” he says. “There are healthcare providers and people adjacent to healthcare providers — such as pharmacists — that want to help you feel better. So know that you don’t have to do this alone.”
His support team includes his primary care physician and his neurologist. His treatment plan involves taking medication for prevention as well as when he has a migraine attack. When a migraine strikes, he takes an oral gepant, a new class of medication that is generally taken at the first sign of an attack.
Over the years, he has narrowed down the list of what works to ease his pain. These are the top ten items in Joe’s migraine relief tool kit.
Joe takes over-the-counter acetaminophen, sometimes paired with caffeine, to help reduce migraine pain.
Ibuprofen and other NSAIDs (nonsteroidal anti-inflammatory drugs) can also help reduce migraine pain.
Joe has found that taking an electrolyte supplement, particularly prior to a workout, helps prevent his migraine attacks.
Joe says he’s had some luck with taking a magnesium supplement, though he admits that he doesn’t take it consistently. Magnesium may help to prevent migraines, but only at higher doses.
Coenzyme Q10 (CoQ10) is a dietary supplement that may help prevent migraines. Joe has tried it both as a way to prevent migraine attacks and reduce the length of an episode.
Joe travels frequently for his work as the director of education and digital strategy for the Global Healthy Living Foundation, which can affect his sleep schedule. And, he says, that in turn can affect his health.
“I became very aware of sleep and time zone changes,” he says. “I make an effort to maintain the same amount of sleep. And, for me, that is 7 to 8 hours. If I get less than that, or more, I’m more likely to experience migraine episodes or attacks.”
Joe also looks to alternative treatments for migraine relief. He has found that massage therapy has helped reduce his migraines. Although, like most alternative therapies, it is not covered by insurance. He also gets massage therapy to help relieve migraine triggers, such as sleep issues and stress.
Joe uses therapeutic blue-light-blocking glasses, developed specifically for migraine sufferers. They filter out harmful light from electronics on days he is having light sensitivity issues and needs to work.
Joe uses a special green light that he finds soothing. Some people find that exposure to a narrow band of green light can reduce light sensitivity and headache severity.
Joe has found that a gel eye mask and face roller, both of which he cools in the freezer, provide relief from migraine pain.
Lastly, focusing on mindfulness is an outside-the-medicine-cabinet solution that Joe has found to be helpful. While he doesn’t have a formal practice in place, he tries to adapt mindfulness into his life in a way that works for him.
“It’s more of a mindset of trying not to dwell on the pain while I’m in it,” he says. “In no way does that cure it. I still take medication. I still need to do that. But it does help shift my mindset around the disease, which I think is really important.
“People that live with chronic disease like migraine can get in a loop of feeling really helpless, and trying to break that loop is really important.”
Migraine is a highly individualized disorder, and Joe says he has found what works for him through trial and error: “Migraine is such a personal disease for people. So what works for me might not work for other folks.”
“My advice is try something, and if it doesn't work, it doesn't work,” Joe adds. “But also be very skeptical of the people who are trying to sell you cures or total fixes. If that was the case, we in the migraine community would all know about it, because so many of us have tried many different things.”