My life with Migraine
This is a reader-submitted story.
1. My diagnosis is:
2. My migraine attack frequency is:
approximately 2-10 days per month
3. I was diagnosed in:
I can’t remember. I’ve had migraines since my mid teens and have been officially diagnosed for at least ten years.
4. My comorbid conditions include:
depression, anxiety, fatigue
5. I take ____ medications/supplements each day for prevention and ____ medications/supplements to treat an acute attack
I am not currently taking any preventative medication or supplements for prevention although I have tried many in the past. All the preventative medication’s side effects were too debilitating for the current frequency of my migraines. I have not had much success with supplements but I still give new things a try occasionally when I read about them.
6. My first migraine attack was:
The first one I remember was at 16 but I suspect there were earlier instances since I was considered a “sickly” kid and was in bed fairly frequently with sort of mysterious symptoms.
7. My most disabling migraine symptoms are:
pain in the eye socket and back of the neck, nausea, dizziness, mild aphasia, trouble thinking clearly, extreme sensitivity to light, noise and smells
8. My strangest migraine symptoms are:
extremely pale with dark circles under my eyes with one eye drooping half closed. Trouble thinking of and selected the right words. shaking, dizziness, frequent urination, desire to eat salty foods – boiled egg whites, Lay’s potato chips and a coke are my go to post migraine meal.
9. My biggest migraine triggers are:
menstrual cycle, weather changes, sleep disruptions, stress, bright or flashing lights, exertion, smoke or fragrances, foods – caffeine, alcohol, artificial sweeteners, yogurt, oranges, legumes, processed meats or foods like top ramen
10. I know a migraine attack is coming on when:
lights seem too bright, trouble finding the right word, stuffy nose, stiff neck, a buzzy “migrainey” feeling that is hard to describe, inexplicable grouchy/snappiness or exceptionally emotional feeling for no reason
11. The most frustrating part about having a migraine attack is:
not knowing how long it will last, worrying about whether the drugs will work, worry about missing work, guilt for not being able to whatever was planned that day, guilt that I’m not being a good wife, friend, etc., shame that I somehow didn’t manage things well and caused the attach to happen.
12. During a migraine attack, I worry most about:
Being fired from my job, extreme worry that my increasing number of migraines, and their increasing duration, means I may develop chronic daily headache.
13. When I think about migraine between attacks, I think:
I try to think very positive between attacks so I think about my migraine management techniques working. For the past few years I’ve been thinking about the hope that menopause will decrease my migraines and my day to day life won’t be so impacted. I think about being a better wife during the pain free days to make up for the days when I am in pain and not as tuned in or physically or emotionally available.
14. When I tell someone I have migraine, the response is usually:
“I’m sorry to hear that.” “I have a _____ who has migraines.” “Have you tried______?”
15. When someone tells me they have migraine, I think:
I hope that they really have headaches and have never had to deal with a real migraine. For most of my life I have tried to keep my migraines a secret because I was embarrassed, felt weak, was worried about people’s reactions so now, I think that the more we’re out of the closet about migraines and the more we take the opportunity to talk to people and educate when asked, the better for all of us.
16. When I see commercials about migraine treatments, I think:
I wish that product had worked for me. This gives people the mistaken impression that if I’d just take that pill, everything would be fine. I’m glad there is increased awareness about migraines and am happy that pharmaceutical companies have realized there is money to be made in treating migraines and so are doing R&D.
17. My best coping tools are:
a warm bed in a dark, quiet room, an ice pack for my eyes, breathing and meditation techniques to manage the emotions, my dogs lying quietly in the room with me until I feel better
18. I find comfort in:
My husband’s understanding of how bad it is, his support and willingness to lay down quietly next to me at times when I can tolerate the closeness, massage when I can tolerate it (my husband is a massage therapist), my dogs, knowing that many years of migraine have given me the experience to weather the storm and the coping techniques that help me
19. I get angry when people say:
You should just “power through it.” If you just _____, you’ll quit having these headaches.”
20. I like it when people say:
I’m so sorry you have to deal with that. What/where can you eat that will work for you? I’m really impressed with how well you handle this.
21. Something kind someone can do for me during a migraine attack is:
Be quiet or lower the lights without acting irritated. When I’m ready to eat, bring me the food I ask for even if it’s quirky or they have to go to the store. If I have a low-level migraine that’s lingering, be will to sit and talk quietly with me about pleasant things.
22. The best thing(s) a doctor has ever said to me about migraine is:
Migraine is very interesting. I have a lot of patients with migraine so I keep up to date with the research. You don’t need to put on a brave face/be tough. Do you need something for the pain right now? Everyone’s migraine symptoms and triggers are different.
23. The hardest thing to accept about having migraine is:
That it never goes away and even perfect trigger management won’t make me migraine free. The worry of escalation or chronic daily headache. The worry that menopause won’t help and I’ll be feeling this bad forever – I’ve had a substantial increase in migraines as I’ve gotten older. The fact that there is no answer, no comprehensive list of things to do/not do. The worst is the limitations in every part of my life, even though all that constant vigilance doesn’t end migraines.
24. Migraine has taught me:
To take charge of my own health and my own healthcare. To appreciate what I have while I have it. To do the best I can and try to not worry about the rest. To rely on the people who love me and to try to be reliable in return when I can.
25. The quotation, motto, mantra, or scripture that gets me through an attack is:
Migraine is fascinating. Thinking of my triggers, symptoms, coping strategies as endlessly fascinating and complex has helped me manage the fear, shame and depression I used to feel so strongly.
26. If I could go back to the early days of my diagnosis, I would tell myself:
To start managing my lifestyle and triggers earlier. To learn everything I could. To not be ashamed. To keep looking until I found a doctor who was educated on the subject AND who I clicked with .
27. The people who support me most are:
My husband and my sister.
28. The thing I most wish people understood about migraine is:
That is not just a headache. That it is a chronic, neurological condition that I have to manage every day. That I’m not being “difficult” when I say I can’t eat something or go somewhere. That just because I ate something or when somewhere one day doesn’t mean I can do it all the time. That just because I look ok doesn’t mean I feel ok.
29. Migraine and Headache Awareness Month is important to me because:
Because it reminds me I’m not alone. Because it reminds me that there is so much more awareness and research than there was 30 years ago when I was alone in the dark not know what to do.
30. One more thing I’d like to say about life with migraine is:
It’s my life and I try to live it every day.
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.