This is a reader-submitted story.
1. My diagnosis is: chronic migraine, intractable migraine, cervicogenic headaches, myalgia
2. My migraine attack frequency is: 1-7 days a week; I am always in some sort of pain, but it is not always a full-blown migraine attack
3. I was diagnosed in: 2008, but I have had episodic migraines since I was 5 years old
4. My comorbid conditions include: insomnia, depression, fibromyalgia, TMJ
5. I take 4 medications/supplements each day for prevention and 6 (not all together) medications/supplements to treat an acute attack
6. My first migraine attack was: the first one I remember having is when I was five years old at my uncle’s wedding reception. I had eaten a lot of green icing off the cake, and when I got hit with the migraine, I threw the icing up everywhere and had to go home with some cousins to lie down
7. My most disabling migraine symptoms are: the pain itself, lack of concentration and inability to speak from the pain being so severe. I used to get the tunnel vision aura and couldn’t see out of my peripheral vision.
8. My strangest migraine symptoms are: I wouldn’t say any of them are strange or unusual… I crave salty snacks if I am not too nauseous to eat, and I can’t close my eyes because they hurt too badly to use those muscles
9. My biggest migraine triggers are: change in the barometric pressure, oranges/orange juice, lack of sleep or too much sleep…hormones are also a big one
10. I know a migraine attack is coming on when: I used to get tunnel vision, but ever since they became chronic, I usually just wake up with the migraine I’m going to have that day. You don’t get a warning aura when the pain is constantly there.
11. the most frustrating part about having a migraine attack is: the inability to function or sit still or rest
12. During a migraine attack, I worry most about: what people think about me just lying there, and I also worry about when the pain is going to stop or diminish at all. “Is it ever going to stop?”
13. When I think about migraine between attacks, I think: pain and despair and fear
14. When I tell someone I have migraine, the response is usually: “Oh I had a migraine once, it was terrible. I can’t imagine having them all the time.” Or “My uncle has migraines, they suck.” Or “Oh I’m so sorry!” or just “That sucks.”
15. When someone tells me they have migraine, I think: At first, I think, “Yeah, right, you’ve had a bad headache a few times and want to call it migraine.” But I ask them about it and if they truly do have migraines, I’m deeply saddened for them
16. When I see commercials about migraine treatments, I think: Been there, done that. If only it were that easy.
17. My best coping tools are: prayer, distraction with electronics, thinking about my daughter
18. I find comfort in: knowing that God is holding me and that there’s a reason for my pain
19. I get angry when people say: I used to get angry when people told me it was going to get better….like how can you possibly know that? I do get irritated with people who do not have migraines but like to make their occasional bad headache seem like a big deal. If you can’t relate, don’t try.
20. I like it when people say: that I must be a very strong individual and that they could never imagine having to live like this (of course my strength comes from God, but it is always reassuring to hear my efforts to function in the world are being noticed)
21. Something kind someone can do for me during a migraine attack is: RUB MY HEAD! Or any part of my body…having a “fingernail massage” is so relaxing and helps me to focus on how good that feels instead of how awful the migraine feels
22. The best thing(s) a doctor has ever said to me about migraine is: HA! Like I’ve ever heard a good thing from doctors…I always hear that I’m a difficult patient and get pawned off onto other doctors.
23. The hardest thing to accept about having migraine is: My limitations…I have a very active personality and I like to stay busy and accomplish a lot, but it is impossible to be as much that way as I want to be with chronic migraines.
24. Migraine has taught me: Easy does it. Rely on God, He is enough. There are more important things in life than achieving status. I am still learning how to ask for help…that does not come easy to me.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: Help me, Jesus
26. If I could go back to the early days of my diagnosis, I would tell myself: this is going to get hard…you’re going to want to give up many, many times. But don’t get angry at God and turn away from Him, because it will leave you more depressed than you can imagine. And make sure you rely on God, not narcotics.
27. The people who support me most are: My grandparents, my parents, and my brother Ben. Many people in my family know what migraines and chronic migraines feel like. My two year old daughter even rubs on me sometimes, which is her way of helping and supporting me and I have a wonderful Facebook support group for patients with chronic migraines and headaches of any kind
28. The thing I most wish people understood about migraine is: it’s NOT just a headache. I think everyone should have to get at least one migraine in their lives so they could have just a tiny inkling of what it feels like to be that miserable on a daily basis. They would appreciate chronic migraneurs so much more instead of judging them. Just because we are able to smile and fake it a lot of the time doesn’t mean we’re not wishing we could writhe on the ground screaming and crying like you would be doing if you had this pain just once.
29. Migraine and Headache Awareness Month is important to me because: I want migraines and chronic daily headaches to be taken seriously. People need to know how prevalent they are and how debilitating they can be.
30. One more thing I’d like to say about life with migraine is: It is hard to keep up a social life because we have to cancel plans many, many times. Talking on the phone is difficult when we are in pain. But if you have a friend with migraines, please don’t give up on them. They need good friends in their lives, even if they are unable to be what you consider a good friend back to you. Be patient with them; it is not their fault. Have compassion, not pity.
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.