30 Things About My Life with Chronic Migraine

Living with chronic illness can be isolating and disheartening. It helps to know we’re not alone. To kick off Migraine Awareness Month, many of us here at Migraine.com are putting together a list of 30 things about our lives with chronic illness that we hope will help reduce that sense of isolation. Here’s mine:

30 Things

  1. My diagnosis is: chronic migraine with aura.
  1. My migraine attack frequency is: it depends. When my life is relatively stress-free and the Texas weather decides to stay consistent one day to the next (haha!), I tend to have only one or two migraine attacks per week. When, as is too often the case, my life or the weather becomes chaotic, I tend to experience one every day.
  1. I was diagnosed in: 2007.
  1. My comorbid conditions include: anxiety and the MTHFR genetic mutation.
  1. I take a multi-vitamin that includes methylated versions of Folate and B-12 each day for prevention and a variety of medications to treat acute attacks, including several compound medications.
  1. My first migraine attack was: in high school
  1. My most disabling migraine symptoms are: dizziness, severe pain, and Alice-in-Wonderland syndrome auras.
  1. My strangest migraine symptoms are: The bizarre visual hallucinations from the AIWS and the mood swings that so often occur before the migraine hits.
  1. My biggest migraine triggers are: fluorescent lights, weather changes, and extreme heat/sun.
  1. I know a migraine attack is coming on when: I become unable to speak correctly. My words get jumbled up and/or I can’t find the right ones when I’m starting to experience an attack.
  1. The most frustrating part about having a migraine attack is: that it so often comes out of nowhere. As much as I know my triggers and work to avoid them, the attacks are really unpredictable. Some days, I’m fine. Others, no matter what I do, take, or avoid, I’m going to get sidelined by an attack – often right in the middle of enjoying something fun.
  1. During a migraine attack, I worry most about: when it will end. I think this is something that anyone who has experienced an intractable period probably struggles with.
  1. When I think about migraine between attacks, I think: about how long I can go before the next one hits, and how lovely life would be if the disease went away.
  1. When I tell someone I have migraine, the response is usually: that it isn’t a big deal. Most people don’t really understand the significance of the disease or the level of disability it can cause until they have seen me experiencing numerous attacks.
  1. When someone tells me they have migraine, I think: Ah, so you understand.
  1. When I see commercials about migraine treatments, I think: I wish these medications worked as well as the ads imply.
  1. My best coping tools are: all about distraction. I have learned to live with the migraine attacks, because they come so frequently. What this usually means is that if I am getting one, I try to engage in low-key, low-stimulation activities with people I love and enjoy spending time with so as to distract myself from the pain. This isn’t always feasible, especially if the attack is particularly bad, but it helps more than anything else I’ve tried.
  1. I find comfort in: the people I love and the positive things I’ve gained from my experience with chronic illness.
  1. I get angry when people say: Migraine isn’t a big deal or it’s “just” caused by stress.
  1. I like it when people say: How can I help?
  1. Something kind someone can do for me during a migraine attack is: not take any distance I may personally.
  1. The best thing(s) a doctor has ever said to me about migraine is: I believe you.
  1. The hardest thing to accept about having migraine is: that it’s a lifelong disease (at least for now).
  1. Migraine has taught me: to accept my limitations.
  1. The quotation, motto, mantra, or scripture that gets me through an attack is: everything is temporary.
  1. If I could go back to the early days of my diagnosis, I would tell myself: It will get better. Hang in there.
  1. The people who support me most are: I feel supported by a lot of people, but often times it is this community that makes me feel most understood and supported. Again, it helps to know we’re not alone and that other people have experienced what we experience.
  1. The thing I most wish people understood about migraine is: that it is a disease, and not “just a headache.”
  1. Migraine and Headache Awareness Month is important to me because: not enough people understand what migraine is and how it impacts millions of people every day.
  1. One more thing I’d like to say about life with migraine is: it’s just life. It has its lows and its difficulties, but it doesn’t prohibit me from enjoying a full life. I hope you’ve all found ways to say the same.

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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