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Migraines: A blessing and a curse

This is a reader-submitted story.

1. My diagnosis is:
Chronic migraine, migraine with aura, Cluster Headaches
2. My migraine attack frequency is:
This varies. In the city at least 20 migraine days per month.. Away from the city 8 days, or less per month. I moved to a different climate to see whether a more suitable environment would help and it has. If I visit the city, I’m back to the same pattern.
3. I was diagnosed in: 1998, but I have had migraines since I was 8 and was told I was being dramatic, or lying.
4. My comorbid conditions include: Multiple Chemical Sensitivity, Cluster Headaches
5. I take ___6_ medications/supplements each day for prevention and ___3_ medications/supplements to treat an acute attack.
6. My first migraine attack was:
Age 8
7. My most disabling migraine symptoms are: Aura, Light sensitivity, Smells feel like they’re attacking me.
8. My strangest migraine symptoms are:
Not being able to explain what us happening, because words make no sense.
9. My biggest migraine triggers are:
Artificial fragrances, smell of fish, falling atmospheric pressure with rising humidity.
10. I know a migraine attack is coming on when:
I feel euphoric, or bitchy for no reason
11. The most frustrating part about having a migraine attack is:
Missing out on fun activities, people judging and blaming me for something I can’t control, people giving me ridiculous advice and then being angry when I don’t follow it.
12. During a migraine attack, I worry most about:
I don’t really worry about anything, but I wish it would just stop.
13. When I think about migraine between attacks, I think:
How much can I get done while I am pain free, I find ways to enjoy every moment of pain free time. I wish life was always this simple.
14. When I tell someone I have migraine, the response is usually:
I usually only talk about migraines to people who get them too. I can’t help being furious with people’s judgments and negative feedback, so I try to fake my way out of the situation.
15. When someone tells me they have migraine, I think:
When people tell me they have migraine, I feel like I have found a kindred spirit.
16. When I see commercials about migraine treatments, I think:
I never pay attention to commercials about anything
17. My best coping tools are:
Solitude, cool places, medical marijuana, silence, wearing sunglasses indoors, avoiding contact with people who lack compassion, avoiding all chemical exposure.
18. I find comfort in:
Knowing that there are other people out there who also deal with this.
19. I get angry when people say:
“Just drink salt water, or lemon juice” or some other substance that 40 years of migraines have proved useless.
20. I like it when people say:
“is there anything I can do to makes things easier for you” Usually the answer is no, but just having people ask the question makes me feel they care.
21. Something kind someone can do for me during a migraine attack is:
Usually there are no people around, but if there are, I prefer them to do their own thing. If I need something I will ask. Neck and shoulder massages or fire cuppng do helpl
22. The best thing(s) a doctor has ever said to me about migraine is:
I really can’t help you. Honesty. Acknowledging that nothing has made a difference and giving me a prescription for medical marijuana.
23. The hardest thing to accept about having migraine is:
Everything: Housing (I have to live where people don’t use fragrances), Employment – I have to be self-employed, so that I can avoid exposure to toxins, money – I am just getting by, social relationships – I come across as weird, especially around this fragrance issue, friends – not many, people don’t get it. I try not to let people know I have a migraine, but sometimes I just have to get out of the situation to somewhere safe fast.
24. Migraine has taught me:
Compassion. endurance, the art of doing things by feel, determination, to love the dark, research skills, Pharmacogenetics, neurochemistry, herbalism, how to make my own medicines, thinking outside the box, rebellion, a healthier lifestyle, living in the moment.
25. The quotation, motto, mantra, or scripture that gets me through an attack is:
” What doesn’t kill me makes me stronger”
26. If I could go back to the early days of my diagnosis, I would tell myself:
“Look for older, more obscure research”
27. The people who support me most are:
Online community.
28. The thing I most wish people understood about migraine is:
No one chooses migraines. We haven’t done something wrong, or not done something right. We really don’t want pop culture advice. Just because it worked for one person, doesn’t mean it works for everyone, we’re all biochemically unique.
29. Migraine and Headache Awareness Month is important to me because:
There are so many myths about migraine out there. Education is key.
30. One more thing I’d like to say about life with migraine is:
The positive things about migraine for me are:: I have done a lot of research and educated myself. I understand migraine really well. I have a deeper sense of compassion for the suffering of others, I have looked at so many options and all this searching has made m e a better, more self-aware human being. My understanding of the limitations of modern medicines has allowed me to take my own path and find my own solutions. I have let go of the hope that people will support me. I have to walk my own path, and always choose health before anything else. This knowing that I am on my own, inspired me to get rid of everything move to a different climate on a shoestring budget. This move has decreased the frequency and duration of my migraines. I can avoid a lot more triggers here. I have learned about rural living, small communities, organic gardening and herbal medicine.

MHAMgiveawayReader-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.

One Response to Migraines: A blessing and a curse

  1. NINA JOLLY says:

    Thank you for this list. I was searching for “Migraines and compassion”. I used to desperately search for “Migraine Cure”. Now, I think, I have tried them all except heavy medication and things like botox. I did a very expensive dental treatment meant to cure me. It did help a lot but dd not take the migraines away. Other things that help; supplements, not overdoing it, being more honest with my husband, kids and friends about what I can and cannot do. I still over do some days (like yesterday) and end up crying in bed the next day (today). I don’t want to focus on fixing me, but loving me right now. I am blessed with a patient husnand and my kids are learning compassion and flexibilty. I pray for more patience (and for this sharp pain to stop).

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