30 Things About My Life with Migraine
This is a reader-submitted story.
1. My diagnosis is: Chronic Basilar-Type Migraine with episodic Cluster Headache
2. My migraine attack frequency is: 15-17 days per month
3. I was diagnosed in: June 2010
4. My comorbid conditions include: None
5. I take __3__ medications/supplements each day for prevention and up to 5 medications/supplements to treat an acute attack
6. My first migraine attack was: April 2010
7. My most disabling migraine symptoms are: blindness during aura, loss of motor control during aura, vomiting
8. My strangest migraine symptoms are: forgetting how to do common things–walk, talk, drive, etc.
9. My biggest migraine triggers are: weather, not sleeping
10. I know a migraine attack is coming on when: I get the munchies, visual aura
11. The most frustrating part about having a migraine attack is: not being able to do what I want when I want. Fear of getting stranded somewhere because it’s not safe for me to drive during an attack. Having to leave a job I love and take disability because I could not consistently show up for work.
12. During a migraine attack, I worry most about: being able to take care of my dogs and my family
13. When I think about migraine between attacks, I think:What did I do? Why is this happening–I was 48 when this all started, am 52 now.
14. When I tell someone I have migraine, the response is usually: falls into 2 camps: sympathy or eye-rolling
15. When someone tells me they have migraine, I think: i am sorry you are having this, is there anything I can do to help you.
16. When I see commercials about migraine treatments, I think: I wish it were that easy. Botox has taken me down from daily migraines to 15-17 per month and I am grateful for those good days.
17. My best coping tools are: knowing that I will have a good day at some point during the month
18. I find comfort in: my dogs and my neurologist.
19. I get angry when people say: My family member/friend uses XYZ drug, why don’t you? Like I haven’t tried it or can’t take it because of my migraine type
20. I like it when people say: Can I call someone for you or drive you home
21. Something kind someone can do for me during a migraine attack is: let me know they will make sure my dogs are fed if I am down for more than a few hours
22. The best thing(s) a doctor has ever said to me about migraine is: This sucks and I am sorry it happened to you. Let’s try to get your quality of life back.
23. The hardest thing to accept about having migraine is:
24. Migraine has taught me: To value every good day but not to overdo it.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: You will have a good day this month, just hold on.
26. If I could go back to the early days of my diagnosis, I would tell myself: Take the disability retirement now, don’t wait. I tried to work full-time for 4 years when missing more than 1/2 a month of work on a regular basis. I took 3 rounds of leave under FMLA and relocated before I realized I just couldn’t keep up any more. This was the most frustrating part of this whole thing, having to leave a job I loved because I could not do it consistently anymore.
27. The people who support me most are: my family.
28. The thing I most wish people understood about migraine is: How frustrated I get because I can’t follow through and plan like I used to.
29. Migraine and Headache Awareness Month is important to me because: I hope it gets more money into research for medications that might work 1/2 as well as advertised (LOL).
30. One more thing I’d like to say about life with migraine is: Don’t give up. It may take a while to find the right doctor and the right “cocktail” to manage your symptoms. Be your own advocate; keep up with research, new drugs, trials, etc. Don’t forget to enjoy the good days!!
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.