By

Jorie’s 30 Things About Living With Migraine

This is a reader-submitted story.

June is National Migraine and Headache Awareness month. I am not very candid about my struggle with migraine outside the realm of my close friends and family, but because this illness is so raw and affecting to me, I am choosing to join in on the “30 Things” challenge. Thank you to The Daily Headache Blog and Kerrie to being a constant support to me, even if I am usually a quiet, anonymous reader. You are such a strong, inspiring person. I constantly relate to you in terms of migraines, so thank you for your words and for launching this project.

1. My diagnosis is Chronic and Menstrual/Hormonal Migraine.
2. My migraine attack frequency is very sporadic, 100% of the time occurring around the time of my ovulation, menstruation, or any time I have any change in hormonal balance. So several times per month, and otherwise, it’s unpredictable outside of my known triggers.
3. I was diagnosed in 2005, at the age of 12.
4. My comorbid conditions include Generalized Anxiety Disorder, Menorrhagia, and a general unknown hormone imbalance
5. I take 4 medications/supplements each day for prevention and up to 6 medications/supplements to treat an acute attack.
6. My first migraine attack was around age 10 or 11.
7. My most disabling migraine symptoms are first, the excruciating, throbbing pain in my skull focused at my temples; second, the nausea and vomiting to the point of passing out; and third, the fact that I become incoherent and cannot make sense of my surroundings. I become tongue-twisted, lethargic, and eventually sleeping for 12+ hours is the only remedy I can resort to.
8. My strangest migraine symptoms are my pain patterns. For example, the pain predictably switches from one side of my head to the other. Also, I used to experience migraine with aura when I was younger, but my visual auras no longer occur, making it much more difficult to predict an oncoming attack.
9. My biggest migraine triggers are hormone imbalances (whatever the cause may be), odors (cigarette smoke, some candles, vehicle exhaust, gas fumes, strong perfumes, the list goes on…), extreme stress/anxiety (most notably being in a situation where I am “stuck” with a crowd of people, also known as agoraphobia), overheated body temperature (such as a long workout or being outside on a hot day), and very loud noises. There are others, but surprisingly I have never seemed to pinpoint any food triggers.
10. I know a migraine attack is coming on when I experience excessive yawning, accompanied by smelling a faint scent of something burnt, like matchsticks. I consider this to be my “new aura,” and my neurologist refers to this sensation as parosmia, or basically the medical term for olfactory hallucinations.
11. The most frustrating part about having a migraine attack is generally just missing out on life, cancelling plans, calling out of work, or spending anywhere from hours to a few days in bed. Oh, and I can’t forget about the “pill limit” placed by insurance companies. That’s a real bugger.
12. During a migraine attack, I worry most about: “Do I have enough medicine to take?” “I wonder how long this is going to last?” “Do I have enough sick time to use if I need to miss work for this?”
13. When I think about migraine between attacks, I think: “Is today a migraine day?” “When can I fill my next prescription?”
14. When I tell someone I have migraine, the response is usually: “Oh, my –insert relative here– gets those.”
15. When someone tells me they have migraine, I think: SOUL. MATE. Haha, but really, it’s really nice to have someone to relate to. I enjoy the “migraine talk.”
16. When I see commercials about migraine treatments, I think: “Please tell me more about those life threatening side effects.”
17. My best coping tool is a metal clothing hanger. I’m actually not joking about that. Anyone with migraine can probably tell you that they have tried the most far-out, crazy home-remedies to get rid of pain…and this is mine. Other than my hanger trick, a cold compress, lavender-menthol rub, and a comfortable bed are nice too.
18. I find comfort in someone believing me and empathizing with me. I’m not asking for a miracle, but realize that migraine is more than “just a headache.” Realize that I am truly disabled, and I am not able to be 100% there during an attack. To those who understand these facts, I am comforted by your presence in my life and I thank you to the moon and back.
19. I get angry when people say: “It’s just a headache. Why don’t you take some aspirin?” Or the ever popular, “I wish I could stay home all day and do nothing like you do.” Oh and I couldn’t forget the old adage, “You’re too young to be feeling like that!”
20. I like it when people say: “Just take it easy, I hope you feel better soon.” “It’s okay that you missed –insert event here–”
21. Something kind someone can do for me during a migraine attack is honestly, just leave me alone until I’m feeling better. I can’t handle someone constantly checking in, even if they mean well. Those close to me understand that if I have been cooped up in bed for 10 hours, I’m still fine, I’m just getting the rest that my body requires. Peep your head in to make sure I’m still breathing, quietly bring me a glass of water, and leave. That’s the best protocol.
22. The best thing a doctor has ever said to me about migraine is: “We will find a medication that works for you, and I am always just a phone call away.” And we did find a great medication! However, it’s still important to realize that I still struggle with migraines many days out of the month—this medication helps me attack a migraine when it begins (referred to as an abortive drug).
23. The hardest thing to accept about having migraine is that so much of my life has been taken from me. Living with this illness has wasted a huge part of my time, energy, and patience. It has destroyed friendships and opportunities. It has depressed me, guilt-tripped me, and hurt me emotionally. Migraine lives on after the recovery, because around every corner, it’s continues to lurk; you don’t know when it may jump out.
24. Migraine has taught me: 1. that no one understands you more than yourself. 2. Through pain there is growth, you will learn about yourself more and more through each attack. 3. Migraine is NOT who you are, it does not define you, you are more than your pain. 4. Never let a migraine make you feel guilty, nor blame yourself for your illness—it is not your fault, regardless of what anyone says. 5. Hold close those few individuals who really “get” what migraine is; don’t let those people go, because those are the people you will need when the going gets tough and it seems there is NO ONE on this planet who knows what a migraine is.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: “Every experience, no matter how bad it seems, holds within it a blessing of some kind. The goal is to find it.” This is a Buddhist proverb that I have always identified with, because I feel that, even though migraine is such a terrible, disabling illness, it might just be a blessing in disguise. There is a balance to everything in life; we must find the good in the bad. I have profoundly become more tolerant because of my battle withmigraine migraine—and I feel that this is good. I can endure, I am steadfast, I have a thirst for life. I will never give up.
26. If I could go back to the early days of my diagnosis, I would tell myself: “Hang on, kid, it’s going to be a bumpy ride. But you’re going to get through it.”
27. The people who support me most are my mom and boyfriend, absolutely. Mom suffered migraines at my age, and never really overcame the disease until after pregnancy. My family and friends as a whole are mostly supportive and try their best to understand. It is difficult to understand what you have never experienced. My boyfriend has slowly, over the years, seen my illness in its gruesome details, I am thankful that he is there in my darkest hours.
28. The thing I most wish people understood about migraine is that migraine is truly debilitating. It’s not just a headache, and I am not “faking” my illness or my pain to get out of work, or an event, or a family gathering. Migraine has ruined many aspects of my life. Truthfully, I avoid the topic of migraine as much as I can. There is a stigma that surrounds migraine, which is why I’m joining the movement this month to bring awareness to migraines. People who live with this illness are humiliated, misunderstood, and pushed to by the side far too often. I’m writing this because I, too, am one of those misjudged, suffering wallflowers. But I have a voice, and it is important that I share it in hopes that others may identify and that I may educate.
29. Migraine and Headache Awareness Month is important to me because it raises a wonderful awareness to everyone else of something that I am intensely aware of every day of my life.
30. One more thing I’d like to say about life with migraine is: I don’t know what life is like without migraine; it affects every move I make. There is such a cause and effect that occurs while living with migraine, but ultimately, while the negative impact far outweighs the positive, I strive each day to find something good in my suffering, to see that little glimmer of good and be the best version of me that I can be, even through the pain. And it is my hope that other migraine or chronic pain sufferers can find that spark of good in life as well. Life is a beautiful blessing, and living in pain certainly blurs that beauty, but its still there. Sometimes its even clearer to us because we must fight to see it.

Reader-submitted stories solely Migraine and headache disorders 30 Things memerepresent 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.

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