Meet LisaHow long have you been living with migraine?
I was diagnosed with migraine disease in 2005 after a midnight ambulance trip to the local ER for pain so severe I thought I must be having a stroke. But in hindsight, I think I may have had symptoms in childhood. It just took until I turned 40 for symptoms to grow severe and consistent enough for a clear diagnosis.
How has your migraine journey changed over the years?
In my 20s and 30s, I’d periodically experience severe headaches that would last for a week or more. Nobody ever said the word “migraine,” but migraine disease was burdened with even more myths and stigma then than it is now. When I got diagnosed, my primary care physician prescribed the most common preventives for me, but she also gave me fioricet—a medication we now recognize as a major factor in medication overuse headache and often escalation from episodic migraine to chronic migraine. A local neurologist tried two antiseizure agents that happened to do me more harm than good and declared I couldn’t be helped.
Finally, I met a leading migraine specialist at a respected headache clinic in my area. He used every ounce of his expertise and creativity to help me find a regimen that gave me the best results possible at the time. He and his team also taught me what excellent medical care looks and feels like, something many people with migraine disease can’t always access.
In 2018, the first CGRP monoclonal antibodies were approved in the US as migraine preventives. I’m one of the very lucky super-responders, patients who have at least a 75% reduction in frequency and severity of attacks. In my case, I’d say I’m in about 95% remission. I still have to practice good “migraine hygiene,” but I might go a couple of months without even wondering where my triptans are. I couldn’t have imagined such success when I started!
What do you wish people knew about migraine?
I wish more people knew that migraine disease is not “just a headache.” It’s a profoundly painful neurological condition with pervasive whole-brain and whole-body symptoms. I also wish that more people understood that migraine disease isn’t always simple to treat. Most people can go to a doctor when something is wrong, get a medication or treatment, and go about their daily lives. Many of us, however, try treatment after treatment, experience severe side effects to existing treatments (severe weight gain/loss, significant cognitive difficulties, extreme fatigue or insomnia, to name a few), spend thousands of dollars trying treatments not covered by insurance, and be wrongly accused of everything from malingering to addiction. The cascade of consequences from that journey can erode a life—broken relationships, estranged family members and friends, job losses and economic hardships, even suicide.
What is your hope for the migraine community?
I hope with all my heart that everyone who has migraine disease can find effective, accessible treatments and supportive people. There are more novel treatments in the research and development pipeline than ever before, many of which show tremendous promise for patients who haven’t found help with existing treatments. Non-specialist clinicians and the general public now know more about migraine disease, too, thanks to the work of dedicated clinicians, researchers, and advocates. People with migraine disease now have more reason than ever to hope that relief is close instead of decades away.
What piece of advice can you give for others living with migraine?
I think the single best piece of advice I would share with other people living with migraine is to talk to other people like us. There are many online groups, individual advocates on social media (I can’t tell you how many amazing people I’ve befriended on Twitter!), and local patient support groups. We share best practices, personal experiences, reputable information, and a lot of mutual support. We mobilize rapidly when the community needs us, from commenting on official channels when a new medication is under consideration for insurance approvals to combating stigma when influential people say harmful things about migraine. Members of the migraine community support each other to a degree you rarely see elsewhere. I don’t wish migraine disease on anyone, but I wish everyone had a community as fantastic as ours.