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30 Things About My Life With Migraines

This is a reader-submitted story. Want to share your 30 Things? Here’s how: Migraine & Headache Disorders 30 Things Meme

1. My diagnosis is: chronic migraines
2. My migraine attack frequency is: Pretty much everyday I have some form of migraine symptoms – the severity varies from day to day.
3. I was diagnosed in: 2002
4. My comorbid conditions include: Bipolar type II, panic disorder w/o agoraphobia, anxiety, PTSD, C-PTSD, and thyroid hormone imbalance due to thyroid cancer/lobectomy of right lobe.
5. I take ____ medications/supplements each day for prevention and ____ medications/supplements to treat an acute attack: I have been on a few prophylactic meds including Topamax and am currently testing out the efficacy of Effexor. I currently have prescriptions for 9 different medications used to treat acute attacks.
6. My first migraine attack was: 4/24/99
7. My most disabling migraine symptoms are: Severe nausea, vertigo, dizziness, disabling pain and muscle weakness.
8. My strangest migraine symptoms are: Aphasia, hypomania, Alice In Wonderland syndrome, food cravings, and chronic tinnitus in my left ear.
9. My biggest migraine triggers are: Marijuana smoke, emotional stress/trauma/stress-letdown, tannins, physical stress/trauma, insomnia, altitude changes, changes in barometric pressure, and temperature changes.
10. I know a migraine attack is coming on when: The Left Eye Twitch of Doom, an increase in sensitivity to smell, taste, sound, light, touch and temperature changes.
11. The most frustrating part about having a migraine attack is: I’ve had a moderate/severe migraine headache most days in the last 3 years – most of the time when they become intense the meds I have either don’t work or make me feel worse. Also having to go to the ER in an acute attack with intense symptoms and they aren’t able to give me any relief aside from rehydration via IV fluids.
12. During a migraine attack, I worry most about: Throwing up because it makes the pain and other symptoms 10x worse.
13. When I think about migraine between attacks, I think: When is the next one coming and how can I get to the ER without anyone to give me a ride.
14. When I tell someone I have migraine, the response is usually: Sympathy, apathy or skepticism.
15. When someone tells me they have migraine, I think: I’m so sorry that someone else experiences this disabling disease.
16. When I see commercials about migraine treatments, I think: Yeah, right, that’ll work. Not.
17. My best coping tools are: Cold packs, noise canceling headphones, dark and cool room, and antinausea meds.
18. I find comfort in: My horse and music
19. I get angry when people say: “Sorry you’re having a bit of a headache” or “It’s just a headache” or “You just need to do more cardio/eliminate gluten/corn/wheat, etc.” And my all time favorite: “Again?? That’s four days in a row!”
20. I like it when people say: “Let me turn the lights off for you and bring you some cold packs.”
21. Something kind someone can do for me during a migraine attack is: Understand that it’s not just head pain – nausea and dizziness are often more disabling for me.
22. The best thing(s) a doctor has ever said to me about migraine is: “You’re doing everything right.”
23. The hardest thing to accept about having migraine is: that I can’t depend on myself; I can’t support myself because I can’t work and I almost invariably let people down.
24. Migraine has taught me: not all pain is visible and everyone’s experience is different.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: I have yet to find one. *Edit* “It’s the guilt of what reality has given me. Making sense of all mistakes and my stupidity, and when you’re sick you seem to think you’ve failed eternally.” ~ Blue October “Overweight”
26. If I could go back to the early days of my diagnosis, I would tell myself: Fight and advocate for yourself!
27. The people who support me most are: A few close friends and my horse.
28. The thing I most wish people understood about migraine is: I have no control over when the symptoms will become disabling – I may have just enough energy to do a couple of things in a day but then just completely crash afterwards.
29. Migraine and Headache Awareness Month is important to me because: It gives louder volume to fighting the stigma of living with migraine and let’s other sufferers know they aren’t alone.
30. One more thing I’d like to say about life with migraine is: Search for and take joy in the small things. Creating a small but meaningful life is the best thing for me. I’d also like to say that it is fucking exhausting trying to convince doctors of how much pain I’m in.

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.

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