30 Things About My Migraines

  1. My diagnosis is: Chronic daily headache, chronic migraine and cervical dystonia.
  2. My migraine attack frequency is: Daily with some being far worse than others.
  3. I was diagnosed in: 1977 initially with migraine but the chronic diagnosis came many years later when the condition intensified in 2008.
  4. My comorbid conditions include: TMJ, and gluten and dairy intolerance.
  5. I take 12 medications/supplements each day for prevention and 5 medications/supplements to treat an acute attack.
  6. My first migraine attack was: at the age of 6.
  7. My most disabling migraine symptoms are: relentless vomiting, blinding pain, and inability to think clearly and/or find words.
  8. My strangest migraine symptoms are: sweaty cold hands, mood changes, trouble finding words, and my version of an aura (the sense of looking through gas-like fumes).
  9. My biggest migraine triggers are: hormones, lack of sleep, stress, bright lights, sustained loud noises.
  10. I know a migraine attack is coming on when: the back of my neck begins to feel congested/tight and hot, or when someone who knows me well tells me that they can “see it in my eyes”.
  11. The most frustrating part about having a migraine attack is: the way it robs me from participating in my life and the life of my children.
  12. During a migraine attack, I worry most about: missing out on my children’s lives and letting people down.
  13. When I think about migraine between attacks, I think: it’s important to try to pace myself carefully so’s not to trigger another attack. I try to spend my well time being really present with my family or, if they’re busy, I’ll grab a walk on my own. I am of course filled with gratitude when I’m not in pain.
  14. When I tell someone I have migraine, the response is usually: one of sympathy. Generally these days people know someone else in their life with migraine and have some sense of how difficult it must be, though certainly most times they have no idea of the severity or frequency of my condition.
  15. When someone tells me they have migraine, I think: about how sorry I am that there’s another person struggling like I am. The adage that ‘misery loves company’ does not apply here as I wouldn’t wish this condition on my worst enemy (if I had one). That said, the isolating nature of the condition makes it important to connect and reach out to others to share challenges and solutions. I get about one email each week from people saying “I have a friend who just started having migraines…” or “I have a friend with a daughter who has migraines….” asking for my help, guidance and support.  It’s a relief to have the deep and wonderful resource of migraine.com to help shoulder the important weight of education and support.
  16. When I see commercials about migraine treatments, I think: how ridiculous and off-point they generally are. If life were only that shiny and easy and migraines so quick to respond to treatment! I am frustrated by the simplistic picture they paint of such a complex condition and find it such a missed opportunity that they do nothing to lessen the stigma or increase education on such an important issue.
  17. My best coping tools are: my loving and understanding family, my special neck pillow, my ice pack, ginger ale, TV, movies, audiobooks, podcasts, Netflix, taking regular walks, and eating and cooking well.
  18. I find comfort in: the love and understanding of my family and friends, the affection of my cats, and birdwatching.
  19. I get angry when people say: “Have you tried ________?” (fill in the blank with any remedy under the sun). While I know this question is generally well-meaning, I’ve been living with this condition my entire life and yes, I’ve tried everything that I want or can afford to try. The question leaves me feeling that I must justify my treatment approach because in their eyes it clearly isn’t working if I continue to be in pain everyday. Such a huge part of migraine is accepting that it is a neurological disorder with no cure that requires daily management. Assuming that one or another approach will solve this complex condition demonstrates ignorance and assigns blame for my daily pain on me. The insinuation is that I am not trying hard enough to mend the condition that has wreaked havoc on my life.
  20. I like it when people say: “I care about you and your family and can only assume the weight of the heavy load you are managing. If I can help with a meal or be on standby to pick up your kids from practice, please let me know”.  Just knowing that others recognize the impact of the condition on the whole family and that they are willing to help in a pinch can be a great relief. We migraineurs can spin stories in our minds that others are judging us (as the stigma still lingers that we are fakers) so it can really help to have others articulate their acceptance and understanding.
  21. Something kind someone can do for me during a migraine attack is: to reassure me that taking care of myself is the right thing to do and give me the sense that everyone will understand if I cannot follow through on plans.
  22. The best thing(s) a doctor has ever said to me about migraine is: “I’m with you as a partner through this journey.” After being abandoned by several doctors due to having a complex case that didn’t respond to an easy fix, it has been a great relief to find a neurologist/headache specialist who is dedicated to seeing me through what has been and may continue to be many challenging years. He sees my input as just as worthy as his, which helps me feel a healthy sense of equity in our roles. I value, trust and am so grateful to and for him.
  23. The hardest thing to accept about having migraine is: how little control I have over when I get them and how long they last. It continues to be a challenge to come to terms with the fact that I cannot make and often cannot keep plans. I want very much to be dependable and hold myself to a high standard in terms of being responsible and attentive. Migraines make it hard to focus and to follow through on any plans or deadlines. The condition has sidelined me from my professional career- a fact with which I still struggle.
  24. Migraine has taught me: about the importance of slowing down, what it means to be productive, and gratitude. I used to pride myself on how much I could get accomplished in a day and now I define productivity differently. Did I show my family I loved them today? Was I respectful and kind to others? Was I generous with what time I did have? If so, then that’s a productive day. I now see the beauty in a moment, because a moment of wellness, however fleeting, can hold so much life within it if we are awake to it. In an odd way, I am grateful for migraines for having forced me to slow down and in turn taught me to appreciate what is most important in life.
  25. The quotation, motto, mantra, or scripture that gets me through an attack is: [this is not applicable to me as there is no one statement that gets me through – but rather a unique system of people, medications, and self-care].
  26. If I could go back to the early days of my diagnosis, I would tell myself: to really drink in the years when the days of wellness were not outweighed by the days in pain. Perhaps in some way if I could’ve understood that those years would be fleeting, I might’ve enjoyed them more fully.
  27. The people who support me most are: my husband and my sons, my mother and my sister, my family as a whole and my best friend.
  28. The thing I most wish people understood about migraine is: that it is a neurological disorder that requires daily management and response. It is not “just a headache” and those who are diagnosed are not faking. By impacting vision, speech, hearing, coordination, taste, and clarity of thought (just to name a few), with intense pain sometimes lasting for days, it takes comprehensive hold of our capabilities and sidelines many of us from the traditional definition of a productive life.
  29. Migraine and Headache Awareness Month is important to me because: it provides a unique opportunity to educate people on a topic that is understudied, underfunded, misunderstood, and loaded in stigma based on ignorance. We desperately need to draw the interest of researchers, physicians, community leaders, and drug companies to help shed light on and develop effective medications for what remains a largely misunderstood disorder that impacts 36 million Americans.
  30. One more thing I’d like to say about life with migraine is: I quite literally could not manage this condition without the love and support of my family. Thank you Allen, Henry and Jack.

 

The Migraine and Headache Awareness Month meme contains 30 questions for migraineurs about what it’s like to live with migraine. Throughout the month, we’ll be sharing Migraine.com writers’ responses. To answer the questions yourself, visit the meme’s home on The Daily Headache. Your response will be published with a URL that you can share (though you can publish anonymously if you prefer).

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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