What Do You Wish You Knew When You First Started Having Migraine Attacks?

What do you wish you knew when you first started having migraine attacks? I pondered this myself recently and was curious about what other people thought, so the Migraine.com team asked the question on Facebook. Community members’ responses to that question inspired this article and I shared my reflections along with theirs. This is by no means a complete list! Please share your thoughts in the comments so we can know what you wish you knew when you first started having migraine attacks.

It was not just a headache

What you were experiencing was actually migraine - and not just a headache.

So many of you said this that I can’t even list all the names for attribution! And it’s true for my experience, too. When I was a kid, doctors and school nurses told me so often that I just had headaches that I stopped telling health care providers that I had head pain along with my myriad other symptoms. I didn’t believe they wouldn’t take the head pain seriously, so I kept quiet for 12 years, which almost certainly delayed my diagnosis.

Migraine triggers change and vary

Triggers can change and vary from person to person (and attack to attack).“That new triggers would pop in over time” is the first thing Monique I. wishes she’d known when she started having migraine attacks. Similarly, when I first started looking for my migraine triggers, I believed that finding and controlling for those triggers would bring relief. I didn’t know that something can be a trigger one day but not another or that my triggers could change over time. I also didn’t expect that I would become more sensitive to certain triggers (like food and scents) over time. I don’t know that would have changed my approach to trigger sleuthing, but it would have been nice to know in advance that the rules were going to change.

Migraine attacks can change

Migraine attacks can change over time.

Dee M. put this so eloquently: “That your migraine can change and look different as you get older. New symptoms can emerge and sometimes as soon as you get used to the new norm, they will change and you have to start from scratch. Sometimes new symptoms and patterns that arise are scary. Luckily as my migraines change and adjust I can stay positive in the fact that the absolute worst trend I’m experiencing likely won’t last forever.” Like with knowing that triggers can change over time, this is important information to have so you can be prepared. Over time, some of my symptoms have gotten better (my head pain is less severe) and others have gotten worse (my fatigue is much worse than it was 20 years ago). For years, I was able to write during attacks and was blindsided when my brain fog got so bad that I couldn’t even think during one. A little warning would have prepared me and might have lessened the grief.

Don't push through migraine, rest

It’s important to let yourself rest.

It felt like Larissa T. was speaking directly to me when she said she wishes she’d known “to not push myself through them so much, and let myself rest.” I so wish Yes, yes, yes! I probably doubled my number of migraine days by pushing myself so hard that it made the attacks worse. I wonder if my attacks would have been less debilitating overall if I’d known the importance of resting to shorten an attack. And I’ve wasted countless hours beating myself for giving into the need to rest and also for pushing too hard and making myself feel worse. The psychological weight of this one is heavy for me.

Migraine attacks aren't always debilitating

Migraine attacks don’t have to be horribly painful.“For years, I just knew I had headaches and didn't realize what a migraine actually was,” Anna W. said. “I only thought my absolute worst ones were migraine, never thought my smaller ones were migraine attacks as well. I thought only the out-of-control ones were. So I didn't give my doctor good information to help me.” Knowing that all of your head pain could be migraine-related, even the small headaches, is something that even people who have experienced migraine for many years may not be aware of. It’s crucial information for getting proper treatment. For example, if you have eight days a month of horrible head pain and six (or more) days with mild head pain, that meets the criteria for chronic migraine. And if you are diagnosed with chronic migraine, it opens the door to treatment options that aren’t available for episodic migraine.

Mental health and migraine can be tied together

Mental health struggles are often comorbid with migraine and can be triggers.

Erin W. said, “I had two migraines in my entire life until I went to college and my anxiety really started to get out of control. Then they took off and just got worse and worse for the next 10+ years. A year ago I had a panic attack and almost passed out on my way to work, so I finally went to someone about that issue. Turns out getting the anxiety under control had the biggest impact on my migraines out of anything else I've tried.” Similarly, depression is the comorbidity that most closely ties to migraine for me. If I’d understood earlier how connected they were, I could have found better treatment for both much sooner.

What do you wish you knew when you first started having migraine attacks? Please leave a comment on the article or chime into the conversation on social media.