30 Things Meme

15 Years in the Dark

This is a reader-submitted story.

1. My diagnosis is:
Migraine, cluster, and tension headaches.
2. My migraine attack frequency is:
Completely unpredictable. I went two years with only half a dozen bad migraine days. Twice I’ve had an intractable migraine last for 5+ months. There’s no way to know when they’ll come or how long they’ll stay.
3. I was diagnosed in:
March 1, 2000. You never forget your first!
4. My comorbid conditions include:
Hashimoto’s thyroid disease.
5. I take 9 medications/supplements each day for prevention and 5 medications/supplements to treat an acute attack.
6. My first migraine attack was:
In the shower when I was getting ready for work. I blacked out from the pain and woke up in the hospital, where my mother stayed with me in the Peds ICU for nearly 2 weeks. I was 18 years old.
7. My most disabling migraine symptoms are:
Losing vision in my left eye, losing hearing in my right ear, dizziness, nausea, motion sickness, and feeling like Alice in Wonderland when she gets SO tall.
8. My strangest migraine symptoms are:
Seeing purple lava lamp like blobs dancing around. I call them the amoebas.
9. My biggest migraine triggers are:
Thunderstorms, wind, snow, and other major weather changes. Stress, not sleeping, not eating, and not drinking enough water.
10. I know a migraine attack is coming on when:
It hits me in the face. I have always described it as a pool ball smack to the left temple. I don’t have any other warning.
11. The most frustrating part about having a migraine attack is:
Whatever plans I had that day are out the window.
12. During a migraine attack, I worry most about:
How long will it last? Am I going to be ok in 4 hours? 4 days? 4 weeks? 4 months?
13. When I think about migraine between attacks, I think:
How lucky I am to have my mom who’s never left my side. How grateful I am to marry a man who’s completely willing to carry the torch forward. He’s gone to great lengths to understand my disease and learn how to take good care of me. I couldn’t survive these attacks without their love and support.
14. When I tell someone I have migraine, the response is usually:
“Oh you poor thing. I hope you feel better soon.” Then they get anxious as to why I’m not feeling better as soon as they would like me to.
15. When someone tells me they have migraine, I think:
“There’s a 98% chance they have no idea what they’re talking about.”
16. When I see commercials about migraine treatments, I think:
“Been there. Tried that. Didn’t work. Next!”
17. My best coping tools are:
Distraction, aromatherapy, sleep.
18. I find comfort in:
My faith. It helps knowing I’m not alone even in my darkest hours. When I don’t have the strength to fight my own battles, I simply ask God to carry me through and He always does.
19. I get angry when people say:
“Oh I get migraines too! I take two excedrin and lay down with a cold compress for half an hour. Then I feel much better!”
20. I like it when people say:
“I’m here if you need anything” and mean it.
21. Something kind someone can do for me during a migraine attack is:
Text me. Please don’t call! Texting lets me know you’re thinking of me and you care enough to reach out without making me answer the phone.
22. The best thing(s) a doctor has ever said to me about migraine is:
I’m willing to fight on your side for as long as it takes. We’re gonna get you through this together.
23. The hardest thing to accept about having migraine is:
I am not in control.
24. Migraine has taught me:
To be flexible. To let go. To forgive myself the times I can’t get out of bed and make the most of the times I can.
25. The quotation, motto, mantra, or scripture that gets me through an attack is:
“There may be pain in the night but joy comes in the morning.”
26. If I could go back to the early days of my diagnosis, I would tell myself:
Know when to say enough is enough.
27. The people who support me most are:
My mom and my fiancé.
28. The thing I most wish people understood about migraine is:
I’m not ignoring your calls, texts, emails, etc. If I haven’t hung out with you in a while, it’s not because I don’t like you. It’s because I’m in pain beyond reasonable comprehension. Let me know you haven’t forgotten me and I will treasure our friendship all the days of my life!
29. Migraine and Headache Awareness Month is important to me because:
Migraineurs feel alone, abandoned, left behind when we can’t attend birthday parties, dinners, holidays, shopping trips, vacations. If everyone understood a little more about what it’s like to live in the dark, afraid of light and noise and smells, perhaps they’d be more gentle with those who suffer.
30. One more thing I’d like to say about life with migraine is:
It’s dark in here. It’s scary. It’s painful. It’s quiet. If a migraineur shares their story with you, please know that’s sacred. It’s means we trust you and probably love you. So thank you for listening.

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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