The Language of Migraine: An Open Conversation

By Migraine.com Team

1 min read

Similar to how each experience with migraine is unique to the individual, so are the preferences for the terminology used to describe those experiences. We sat down with Anna and Nancy, two of our Health Leaders living with migraine and a few other headache disorders to discuss the nuances, sensitivities, and thoughts surrounding the language used in the migraine community. Watch the video below to see what they had to share.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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poetdoll Member
THANK YOU for this wonderful video! Thank you for putting in the time to cover so many topics! My takeaways - how do I pick? When Nancy talked about doing everything perfect and still get a migraine because it's a disease - so freeing for me! Also Anna talking about the degrees of migraine: not necessarily including throwing up or head pain, still out in public functioning and with or without aura. Glad y'all made the point about finding not just any neurologist but a board certified headache specialist! My neuro is one. When I walked into his office 9 years ago I didn't have all the "correct" terminology to describe my migraines but he was able to figure it out - because he had the specific training! 
1. Nancy Harris Bonk Moderator
 <inline-mention username="poetdoll" user-id="3719590"/> Thank you so much for you kind words. I'm so happy to hear our video resonates with you. We're in it with you! Good for you for finding a board certified headache specialist! I'm a firm believer in these doctors 😀. You've made my day! I'm sending you pain free wishes, Nancy Harris Bonk, Patient Leader/Moderator (Team Member)
2. Anna Williams Moderator & Contributor
 <inline-mention username="poetdoll" user-id="3719590"/> Thank you so much- I'm so glad to hear what Nancy and I said resonated. I'm so glad your neurologist is a headache specialist and was able to listen to your language and translate well! Anna (Team Member)
CommunityMember6ea2ce Member
Thanks for posting. I have been a lifelong migraine sufferer with episodes as far back as early childhood. This past year at age 67 I experienced increase in duration and intensity finding my level of debilitating markedly increased. Pushing thru even with a Tristan was simply not possible. So when I hit that wall I took the initiative to seek help at a migraine clinic as well as consulting with other neurology specialists. What I learned is that my migraines are a common indicator to a much bigger but underdiagnosed rare systemic vascular disease - fibromuscular dysplasia (FMD) that can lead to aneurisms, dissection or strokes. 90% of FMD diagnosed patients are women, many present with migraines as one of the red flags. Despite having regular, quality care from an internist and MS specialist, screening for FMD or vascular issues was never recommended until an MRI for my MS alerted to what turned out to be a carotid artery dissection occurring when I was going through these intense migraines. Migraines run in my family, and I have a brother similarly afflicted with migraines facing an aortic and carotid aneurism. He too has experienced arterial dissection which like stroke and aneurysms are life threatening or disabling events. I put it out here to you simply to share that if you are a migraine sufferer, the vascular connection exists and most often until an event occurs it goes under the radar of most Drs and patients. My cardiovascular FMD specialist advised screening of those in my family who have migraines for FMD by a specialist. As for the migraine "headache" clinic I am now a patient of, it has been life changing. I now inject monthly with Ajovy & take Rizatriptan vs. My former Sumatriptan. While I still do have migraine flare up, it is significantly decreased in frequency, duration and intensity. Oh, and I also retired from a very high stress toxic work environment. Many people, including Drs. and patients like former-me have normalized them as a nuisance part of life that is a non-life threatening chronic pain management condition. We shouldn't kid ourselves. In themselves, they are more consequential in the damage to life quality they create. In some cases as I learned they are possible warning signs of what could be fatal, so migraines should never be underestimated. I know I am preaching to the choir so thank you for letting me unload these thoughts.
1. Tonya Henry Moderator & Contributor
 <inline-mention username="CommunityMember6ea2ce" user-id="9765320"/> I am so sorry that you were diagnosed with a rare disease. I am glad that you were able to get a proper diagnosis. To me, knowing is half the battle. I am glad that you are seeing a doctor who can help with that. Thank you for sharing your warning signs and putting the information out there. I just wanted to say that I have several rare disease myself. I do not have this, but, I can say that life has been, and still is, challenging. I am doing ok though. We do have a community in which you can tell your rare disease story and possibly, find others in your situation. Here is the link: <a href='https://raredisease.net/' target='_blank' rel='noopener noreferrer ugc'>https://raredisease.net/</a>. Thank you for sharing and being part of the migraine community here! (Tonya, team member).