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30 Things About my Life with Chronic 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 migraine with intractable pain, being treated for cluster headaches
2. My migraine attack or headache frequency is: all day, every day. Several peaks of increased pain during the course of the day. Cluster headaches come in phases.
3. The first migraine attack or headache I remember was: in high school, missing several days and laying in bed wondering if I was ever going to be back to normal.
4. My pain levels range from: 5-9, with a 10 once every few weeks. I hate classifying anything as a 10. Most of my daily life is spent at a 7/8.
5. I was diagnosed in: 1990, episodic. 2011, chronic. 2015, cluster headaches.
6. My comorbid conditions include: depression, anxiety, fibromyalgia, pre-diabetes, neck pain
7. I take __8__ pills each day for prevention and __0__ pills to treat an acute attack. I rarely medicate acutely due to ineffectiveness and side effects of meds. I have a potent nasal spray that sometimes is effective.
8. In addition to pain, other symptoms I experience include: sensitivity to my environment, nausea, diarrhea, irritability, fatigue, difficulty concentrating, flushed cheeks, droopy eye, tooth & ear pain, vision problems, neck pain, phantom smells
9. Treatments I have tried include: over 2 dozen preventative and abortive medications, hospitalizations, DHE, Lidocaine and Ketamine infusions, supplements, nerve blocks, biofeedback, dietary changes, massage, chiropractic, therapy, exercise/yoga, various birth controls.
10. During a migraine attack or headache, I: am really disabled, cranky, and sensitive, and am trying to figure out how to reduce my pain
11. My migraine attacks or headaches are triggered or get worse when: the weather is bad, I’m stressed, I’ve eaten something, I’m in certain phases of my menstrual cycle, it’s too hot, I get too little sleep, I go too long without eating, I drink alcohol.
12. The most frustrating part about having migraine or a headache disorder is: not functioning at the level I know I’m capable of, missing events, and not being the mom my kids deserve.
13. Having migraine or a headache disorder causes me to worry about: my family, my bills, my long term health, my social security, my lost career, my future.
14. When I tell someone I have migraine or a headache disorder, they usually assume or say: “Feel better”, “Oh that stinks”, or assume it can’t be that bad because I look fine.
15. When I see ads or articles about migraine or headache disorders, I think: most people are misinformed and don’t know the challenging truth.
16. My best coping tools are: The Office, my comfy sofa spot, my sunglasses, rest, and my cold face mask.
17. I find comfort in: knowing I am not alone, my husband and kids, peanut butter
18. I get angry when people say: “Have you tried…”, “I get headaches, too”, “So you still get headaches?”
19. I like it when people say: “Let me know how I can help”, “I’m sorry you’re still suffering”
20. Something kind a person can do for me during a migraine attack or headache is: help take care of my kids, help get my medication and get me settled, let me rest
21. The best thing a doctor has ever said to me about having migraine or a headache disorder is: “You’ve been having a hard time, let’s step back and re-evaluate”
22. Having migraine or a headache disorder has affected my work/school life by: causing me to leave my career
23. The hardest thing to accept about having migraine or a headache disorder is: that my life may be like this forever, and that I have not been pain-free for over 5 years.
24. Having migraine or a headache disorder has taught me: patience, acceptance, the strength of community, not to judge a book by its cover, disabilities look different
25. The quotation, motto, mantra, or scripture that gets me through hard days is: This too shall pass
26. If I could go back to the early days of my diagnosis, I would tell myself: be patient, and be prepared to fight for yourself and for a long time.
27. The people who support me most are: my husband, my kids, my close family, my migraine community
28. The thing I most wish people understood about migraine or headache disorders is: it’s more than just head pain, but the head pain can be horrendous. And just because I look fine does not mean anything.
29. Migraine and Headache Awareness Month is important to me because: it’s my opportunity to share my story and educate those in my life.
30. One more thing I’d like to say about migraine or my headache disorder is: it has made me the strongest and most resilient I’ve ever been in my life.

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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