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37 years and counting

This is a reader-submitted story.

1. My diagnosis is: chronic migraine and vestibular migraines
2. My migraine attack frequency is: five out of seven days p/week
3. I was diagnosed in: 1979
4. My comorbid conditions include: depression, vestibular migraines
5. I take __3__ medications/supplements each day for prevention and __2__ medications/supplements to treat an acute attack
6. My first migraine attack was: when I was 14 – at the Miami airport flying to St Thomas… so sick on the plane and for 3 days… my mom/dad didn’t know what was wrong… we had a business meeting to attend with my Dad… they thought I was being rude and made excuses for my behavior. They soon realized something was very wrong
7. My most disabling migraine symptoms are: PAIN…numbness on right side… aphasia… inability to write clearly or spell common words
8. My strangest migraine symptoms are: food cravings and hungry while nauseated
9. My biggest migraine triggers are: smells, light, certain foods, smell of cooking bacon or ham
10. I know a migraine attack is coming on when: I smell smoke (my aura) or feel it “knocking” above my eye… just there, not really setting in
11. The most frustrating part about having a migraine attack is: They happen so often… can’t commit to anything (work and social) because I can’t schedule it. Loosing my ability to work (career)… I changed careers so I could “skip” work if needed every couple of weeks – but it didn’t work – my migraines go on for days…
12. During a migraine attack, I worry most about: It won’t end
13. When I think about migraine between attacks, I think: Thank god, a pain free day (happy)… when will it start again (fearful)
14. When I tell someone I have migraine, the response is usually: Oh, my (fill in the blank) has that…. or my sister who wants to compare my disease with her MS – and she thinks MS is more debilitating.
15. When someone tells me they have migraine, I think: Wow – how often? If not chronic – I get jealous. Or, they’ve confused a migraine with a more typical headache.
16. When I see commercials about migraine treatments, I think: FOOLS
17. My best coping tools are: sense of humor, cold packs and eye masks, being kind to myself (i.e., spa day with facials, healing water baths)
18. I find comfort in: mac and cheese; chocolate (not my triggers). My cat who snuggles with me.
19. I get angry when people say: I wish I could do something for you, then lists all the ways they can’t help. Offer advice or provide me with research articles thinking I haven’t already done this in the past 37 years.
20. I like it when people say: let me go to the store for you – what do you need?
21. Something kind someone can do for me during a migraine attack is: allow me to feel the pain and isolate myself in a dark quiet room
22. The best thing(s) a doctor has ever said to me about migraine is: I don’t think you have typical migraines – let’s run some tests… discovered I have sleep apnea, a PFO in my heart (just had surgery), and SCD – a rare condition that contributes to vestibular migraines and explains my balance problems.
23. The hardest thing to accept about having migraine is: I will always have this disease and it has cost me friendships, relationships, and my career…. I had surgery for the PFO 12 days ago with three debilitating migraines since then….. and some smaller headaches too. One day a silent migraine.
24. Migraine has taught me: patience.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: this too shall pass…. don’t ask “why me, but why not me?” – meaning everyone else has something (cancer, heart disease, bad marriages, etc.)
26. If I could go back to the early days of my diagnosis, I would tell myself: give yourself a break – accept this condition and learn ways to live with it
27. The people who support me most are: members of my family (two siblings of five are outstanding) and my parents (when they were alive). My good friends are next.
28. The thing I most wish people understood about migraine is: This is an ongoing disease and not something I use to “get out of my commitments” and that I don’t have coping skills for stress – I do. My migraines are not stress induced (for the most part) and that I have great food restrictions.
29. Migraine and Headache Awareness Month is important to me because: it gave me the ability to post on facebook some facts
30. One more thing I’d like to say about life with migraine is: If one doctor says “there is nothing more I can do” don’t give up or get discouraged… research and find new docs who specialize in migraines

Reader-submitted stories solely Migraine and headache disorders 30 Things memerepresent 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.

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