30 Things about my 25 years of migraines

This is a reader-submitted post.

1. My diagnosis is: migraine
2. My migraine attack frequency is: monthly, with hormones, although I am getting migraines outside that now
3. I was diagnosed in: 1990
4. My comorbid conditions include: IBS, anxiety, depression, endometriosis
5. I take no medications/supplements each day for prevention and 2 medications/supplements to treat an acute attack (paracetamol and codeine)
6. My first migraine attack was: 1990 (at age 20), when i was put on oral contraceptives. My doctor quickly recognised the pill was the cause and took me off them, barring me from ever using estrogen again.
7. My most disabling migraine symptoms are: vomiting,diarrhea, acute anxiety, pain and fatigue
8. My strangest migraine symptoms are: loss of appetite in the 24 hours before an attack, I feel like I am out of my body just floating.
9. My biggest migraine triggers are: hormones, stress, bright flashing lights, revolving fans in department stores
10. I know a migraine attack is coming on when: I have pain over my eye and my bowels become looser
11. The most frustrating part about having a migraine attack is: waiting for the vomiting, which signals the beginning of the end of the pain
12. During a migraine attack, I worry most about: vomiting so much my throat and stomach will bleed and having a panic attack (vomiting phobia)
13. When I think about migraine between attacks, I think: I actually dread them because I know they will happen but now the pattern has changed I can’t always prepare in advance, and that makes me very anxious.
14. When I tell someone I have migraine, the response is usually: generally I only discuss it with other migraneurs that I know of, so we discuss and compare symptoms and triggers, how long they go on for, what we take and whether we get postdrome or not. We also often discuss the frustration that there isn’t a cure for them despite them being so prevalent.
15. When someone tells me they have migraine, I think: I understand, I know the debilitation they cause, you are not alone.
16. When I see commercials about migraine treatments, I think: they are a load of rubbish, because every migraine is different and not all treatments work for everyone. Some of the treatments are also not medically proven so they are trying to sell a product for the purpose of making money ie taking advantage of vulnerable people.
17. My best coping tools are: at the time of a migraine-just riding it out, staying in a dark room, putting cold compresses on my forehead, keeping a bucket and towel beside my bed.
18. I find comfort in: pilates, deep breathing, classic music, and knowing I am not the only person going through this.
19. I get angry when people say: you should do X,Y,Z, not eat chocolate/drink coffee, its just a headache, pull yourself together, stop being a drama queen, you’re just doing it to get attention, its not that bad , I get headaches too.
20. I like it when people say: is there anything you need, what can I do, I get them too, what works for you? (showing empathy and interest)
21. Something kind someone can do for me during a migraine attack is: hold my hand, reassure me, put cold compresses on my head, keep lights off
22. The best thing(s) a doctor has ever said to me about migraine is: telling me the reasons for my migraines (eg my menstrual cycle) and prescribing me a pain relief regime that is right for me and my pattern of migraines. Also actually believing me helps alot.
23. The hardest thing to accept about having migraine is: knowing what the pain, vomiting and diarrhea do to my body, that I’m going to feel really horrible for a while and into the post-drome, and then at some point in the future it’s going to happen again 🙁
24. Migraine has taught me: to have more body self awareness, to try and minimise stress as much as possible.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: this too will pass.
26. If I could go back to the early days of my diagnosis, I would tell myself: This is a genetic problem handed down to me, just like someone gets diabetes or arthritis, I get migraines. Everyone has something they must learn to live with and manage, my illness is migraines (and mental illness).
27. The people who support me most are: my mother, my friend Tracy (who also gets migraines) and my doctor.
28. The thing I most wish people understood about migraine is: it is a chronic invisible illness that is incredibly disabling in work and personal life. It costs the country alot in medication, missed work and disability payments and affects the self esteem of sufferers quite dramatically. It is NOT a regular headache. there is no known cure or common trigger to all patients.
29. Migraine and Headache Awareness Month is important to me because: it lets other people see real people and how their lives are affected long term.
30. One more thing I’d like to say about life with migraine is: although I really don’t like it, I am learning to manage it better as I get older and I am hoping once I reach menopause, the frequency of migraines decreases (as it did for my mother).

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.