Migraine Awareness Month/30 Things
This is a reader-submitted story.
1. My diagnosis is: Chronic Migraine
2. My migraine attack frequency is: Daily, 24/7. Every. Day.
3. I was diagnosed in: I started getting migraines when I was in middle school; they increased in strength and duration as I got older; diagnosed as having migraines by my primary care doctor in high school; turned daily in 2007 after my son was born; diagnosed in 2009 as “chronic migraine” by my amazing headache doctor
4. My comorbid conditions include: depression, anxiety
5. I take 6 medications/supplements each day for prevention and varying combinations of 7 medications to treat an acute attack
6. My first migraine attack was: In middle school sometime. I don’t remember the specific incident. They’ve just kind of always been a part of me. Knowing what I now know about migraines, I know that I was getting abdominal migraines often as a child, too.
7. My most disabling migraine symptoms are: Excruciating pain that feels like it’s ripping my head into pieces. Visual auras that takeover my whole field of vision.
8. My strangest migraine symptoms are: Sometimes it looks like the walls of the room are all closed in on me, like they’re all right next to me. Then it reverses and it seems like the walls and my hands are a mile away. It’s called Alice in Wonderland syndrome, and it’s freaky. I also get bad alloydnia, which basically means my nerves are firing crazy and *everything* hurts. My hair hurts my scalp, my clothes hurt. The visual auras are almost pretty sometimes, before the pain sets in. I see sparkling glittering shapes that grow and move. They’re there if my eyes are open or closed. “Glittering castles in the sky” is my favorite analogy I’ve heard. The shapes glitter and spread until my peripheral vision starts to go dark. The dark spreads over my whole vision and then it just stops and it all goes away. Sometimes I get colors covering my vision, like kaleidoscopes.
9. My biggest migraine triggers are: Bright lights especially if they’re flickering, skipping meals, stress but not usually during the stressful situation directly after.
10. I know a migraine attack is coming on when: A lot of times I don’t. Sometimes I get the visual aura, which is a sign that pain is about to hit hard. My face flushes at the beginning of an attack sometimes. Sometimes I realize I’m in a really bad brain fog like I’m swimming through mud trying to think straight. Or I realize that I’m miserably cranky for no reason. Then once the pain starts, I put two and two together and realize I should have known it was coming.
11. The most frustrating part about having a migraine attack is: Having no control over them. Not knowing when it’s going to get bad, not knowing if I can make plans for next week or even the next day. How it all runs together, the premigraine (prodrome) stage, the actual migraine, and the after (postdrome) hungover stage.
12. During a migraine attack, I worry most about: Things that I “should” be doing. What I’m missing. Whether I’m being a good mother.
13. When I think about migraine between attacks, I think: There’s no “between attacks”, just different numbers on the pain scale.
14. When I tell someone I have migraine, the response is usually: “You should try this thing I saw on Dr Oz….” I probably already have. Trust me.
15. When someone tells me they have migraine, I think: About whether or not I can help
16. When I see commercials about migraine treatments, I think: Excedrin commercials are assholes.
17. My best coping tools are: Laughter, makes the best of a crappy situation. (Family trait) Also, mindfulness and breathing techniques to relax.
18. I find comfort in: My family. My puppies.
19. I get angry when people say: “it’s just a headache.” or “You look fine.”
20. I like it when people say: “Want me to turn these light off for you?”
21. Something kind someone can do for me during a migraine attack is: Rub my head gently. Draw up a shot of my medicine. Be quiet.
22. The best thing(s) a doctor has ever said to me about migraine is: A lot of people with migraine disease are really smart. It’s almost like your brain is firing on all cylinders all the time. Of course, sarcastically “best”, there was a time a doctor told me that I’m “medication resistant” and that’s part of why treating me is so difficult. Oh! Or this other doctor who told me that if I could just stop stressing about the migraines then I wouldn’t have them. I hated that guy.
23. The hardest thing to accept about having migraine is: The unpredictability of it all. Having to miss out on things. Feeling like I’m letting people down. The guilt that comes with it.
24. Migraine has taught me: To always keep going, keep fighting. I realized I’m stronger than a lot of people (including myself) think. To be able to do lots for myself even when I think I can’t.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: Not necessarily one quote, but I like the book A Brain Wider Than The Sky by Andrew Levy. It’s his struggle with migraine interwoven with information about migraines and famous people with migraines all through history. Makes me feel a lot less alone in the world.
26. If I could go back to the early days of my diagnosis, I would tell myself: Hang in. There’s tough days ahead, but you’re tougher.
27. The people who support me most are: My husband and my son. I also am lucky enough to have found some amazing doctors.
28. The thing I most wish people understood about migraine is: Its so much more than pain in your head. It’s all encompassing. It effects every part of you. Vision, balance, energy level, digestion, mood…. Everything. And it’s different for every person with the disease.
29. Migraine and Headache Awareness Month is important to me because: The National Institute of Health allots only .012% of its research funding to migraine/headache. That’s equal to about $.36 in research funds for every person with migraine. In comparison, diabetes research gets about $49.38 per person and asthma receives about $12.25 per person. The last treatment specifically for migraine was created in 1991 and is still basically the only medication created for migraine. Most other drugs used to treat migraine are off label or help migraine as a side effect. There’s things in the works, but nothing FDA approved yet. Awareness is hopefully the first step to funding and help.
30. One more thing I’d like to say about life with migraine is: If you’re fighting it, you’re not alone. Find someone to talk to. A friend, a stranger online, a doctor. Talk. It can seem never ending and hopeless. If you have a friend with migraines, be that person to them. Just ask how they are and don’t judge.
Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres. Follow this link to learn how to share YOUR 30 Things about living with a headache disorder.