1. My diagnosis is: chronic migraine
2. My migraine attack frequency is: It’s currently twice a day, but they are managed fairly well with abortive medication. They’ve been constant for most of my adult life and, until recently, didn’t respond well to abortive medication. The current state is much better than that, but it’s not as good as in 2014, when I was down to five a week that responded to meds.
3. I was diagnosed in: 2002, though it took several years for me to believe it was migraine because it looks so different from my husband’s migraine with aura.
4. My comorbid conditions include: Other than migraine and depression, I’m extraordinarily healthy.
5. I take 2 medications each day for prevention and 2-4 medications to treat an acute attack.
6. My first migraine attack was: I’m sure it came before then, but the earliest I can remember is when my fifth grade teacher left the door to the workroom open and the smell of rose-scented potpourri filled the classroom. I used to think the potpourri was the trigger, now I wonder if I was just more aware of the odor because I had a migraine. Either way, I still have an extreme aversion to anything rose-scented.
7. My most disabling migraine symptoms are: Fatigue and cognitive dysfunction. Pain would have been on the list until 18 months ago. These days, the pain is miniscule compared to the fatigue and cognitive dysfunction .
8. My strangest migraine symptoms are: earaches, tooth sensitivity, and feeling like something is in my eye.
9. My biggest migraine triggers are: eating and odors.
10. I know a migraine attack is coming on when: my feet get cold.
11. The most frustrating part about having a migraine attack is: not being able to think clearly.
12. During a migraine attack, I worry most about: when it will end. My response to this fluctuates depending on how severe the attack is and the pattern my attacks are currently following. For most of my life with chronic migraine, I worried a ton about what I wasn’t getting done during an attack.
13. When I think about migraine between attacks, I think: I’m so happy I don’t have one right now.
14. When I tell someone I have migraine, people assume: it’s an infrequent annoyance, not a life-changing condition.
15. When someone tells me they have migraine, I think: Do they actually have migraine or do they think a bad headache is a migraine? (Thinking this feels like a failure of of empathy—but I can identify and commiserate with the person who has migraine, I feel like I have to educate the person who thinks a bad headache is a migraine.)
16. When I see commercials about migraine treatments, I think: I’d like to find a treatment that gave me that much relief.
17. My best coping tools are: mindfulness. All my tools—like presence, deep breathing, not letting my mind churn on fears—come down to mindfulness.
18. I find comfort in: my home and my couch.
19. I get angry when people say: “it’s all in your head” or “think positive and you’ll feel better.”
20. I like when people say: “I have a friend/sister-in-law/coworker who has migraine. What they go through has shown me that migraine is not just a headache.”
21. Something kind a person can do for me during a migraine attack is: asking me what I need. Sometimes I need my hand held, other times I need to be left alone. Often, I need an errand run (usually to the pharmacy or grocery store).
22. The best thing a doctor has ever said to me about migraine is: “There are always more treatments we can try.”
23. The hardest thing to accept about having migraine is: it will be a constant presence in my life.
24. Migraine has taught me: that I can withstand anything.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: “When you’re going through hell, keep going” and “Never, never, never give up” — the first is from Winston Churchill, the second is an abbreviated form of something he said.
26. If I could go back to the early days of my diagnosis, I would tell myself: Never, ever dismiss your symptoms. Also, you’ll be amazed by why you can do.
27. The people who support me most are: I’m fortunate to have too many to list, including my husband, family, friends, readers, and other people I’ve met through the migraine/headache community.
28. The thing I most wish people understood about migraine is: it’s a neurological disorder with symptoms that can be felt throughout the body.
29. Migraine and Headache Awareness Month is important to me because: raising awareness is a necessary part of reducing the stigma of migraine and headache disorders. It’s also imperative to get better funding for research into the biology of and treatments for every headache disorder.
30. The one last thing I’d like to add is: having a headache disorder is hard work. As I said recently in a Migraine.com post, people tell us every day, in ways small and large, that our suffering doesn’t matter. It does matter, so very much. Keep searching for a doctor who understands what migraine is really like.