Ever wondered what life is like for me? Kerrie Smyres at The Daily Headache has created a list of questions for people to answer to share the similarities and differences in their stories with migraine and other headache disorders. This is my story.
1. My diagnosis is: Chronic migraine with aura, intractable migraine.
2. My migraine attack frequency is: Approximately 3x per week. This is down from the period of time in my life when I was having migraines every day.
3. I was diagnosed in: August 2004.
4. My co-morbid conditions include: Obsessive-Compulsive Disorder, Panic Attacks, Generalized Anxiety Disorder, Depression, Hypothyroidism, Vitamin D Deficiency.
5. I take 3 medications/supplements each day for prevention and anywhere from 2-10 medications/supplements to treat an acute attack. It should be noted that the ~10 medications alluded to in the previous sentence are not taken all at once. I have around 10 medications available to me for acute attacks. Usually, I take around 5 medications during the course of an acute attack.
6. My first migraine attack was: in August 2004. I was 19 years old and about to start my sophomore year in college at UMASS Amherst.
7. My most disabling migraine symptoms are: severe head and neck pain, nausea and vomiting, extreme sensitivity to light/sound/smell, and intense vertigo.
8. My strangest migraine symptoms are: Increased urination, phantom smells (smelling things that aren’t there), visual disturbances (flashing lights, colored lights, etc), numbness in my face/extremities. During one attack, I was reading a book to my preschool classroom and the words that were coming out of my mouth were not the same words that I thought I was saying. This is often referred to as “transient aphasia.”
9. My biggest migraine triggers are: Weather (particularly drastic changes in temperature or impending precipitation of any kind), heat, sunlight, fluorescent lights, certain foods (including but not limited to chocolate, aged cheeses, nitrates, and artificial sweeteners), strong scents/odors (including but not limited to floral scents, citrus scents, most perfumes/colognes, most cleaning products, and smoke from burnt food and/or cigarettes), crying and emotional distress.
10. I know a migraine attack is coming on when: I usually get visual disturbances before anything else. As soon as the flashing lights and colors appear, I know that a migraine is imminent. On the occasions that I don’t get that warning, pain in the left side of my forehead and neck coupled with nausea is a good indication that things are about to get started.
11. The most frustrating part about having a migraine attack is: I can’t seem to do anything about an attack once it has started and I have to shift my focus from whatever I am currently doing/about to do and go into survival mode. Not attending to the migraine attack is not an option. I never know if the medication will work or how long it will take to work or how many doses I will need. My life gets put on hold indefinitely until the attack is over.
12. During a migraine attack, I worry most about: How long will this attack last? Will the medication work? How long will it take to work? Do the people I’ve had to cancel on hate me now? Am I going to have these for the rest of my life? What if the pain never stops?
13. When I think about migraine between attacks, I think: When will the next migraine attack begin? Will I ever be able to have a reliable social life or career again? How many more people have I alienated with each new attack? How long will people be willing to put up with me?
14. When I tell someone I have migraine, the response is usually: At present, because of my advocacy work, most people already know that I battle migraine. They often say things like “I’ve had a migraine before but they’re not nearly as bad as yours.” Sometimes, they say “Your migraines wouldn’t be as bad if you didn’t spend all that time writing and talking and thinking about them.” During a migraine attack, some folks say “Again?!” or “It’s so hard to watch you suffer.” (I’ve got news for you…experiencing a migraine attack is pretty darned hard for me.) Occasionally, someone will say “What can I do for you?” or offer suggestions. The best thing for people to say is “I’m sorry you’re hurting. I hope you get some relief soon. Is there anything I can do to make you feel more comfortable? I’ll leave you alone but I love you and I am here for you.”
15. When someone tells me they have migraine, I think: I tell them that I battle migraine as well. Then, I tend to ask questions to find out whether they truly suffer from migraine or are using the term to describe a headache. I also try to suggest things that have helped me, such as seeing a certified migraine specialist or joining a support group.
16. When I see commercials about migraine treatments, I think: They are misleading. They often make it seem as though using particular medications or treatments are cures for migraine. Listen closely here: there is currently NO CURE for migraine. We only have hope of managing migraine right now. Also, the commercials fail to mention how difficult it is to get your insurance to pay for treatments such as Botox injections, which otherwise cost thousands of dollars every three months.
17. My best coping tools are: Medications. Ice packs. Heat packs. Caffeine. Ginger Ale. Peppermint. Eye mask. Migraine-specific sunglasses. Ear plugs. Air conditioning. Laying down in a dark room. Mindfulness. Meditation. Dialectical Behavior Therapy.
18. I find comfort in: Music (especially James Taylor and George Harrison and Simon & Garfunkel.) Reading. Watching/listening sitcoms (especially The Middle and Will & Grace) and silly movies (especially Sex and the City.) Hugs. Blogging. My support groups. Coloring. Prayer. My boyfriend Ian.
19. I get angry when people say: “It must be nice to be able to lay around all day and do whatever you like.” That is, in fact, the exact opposite of what I do. I was a preschool teacher for many years and it was never just a job to me; it was a lifestyle. I miss working with children every single solitary day. I had to actually grieve the loss of my job and my currently inability to work outside the home. I also get angry when people say things like “It’d be so nice to have just one day when you didn’t have a migraine and weren’t anxious or depressed.” It’s the tone of this one that matters, as though the person is saying it would be nice for them if they didn’t have to deal with all my “nonsense.” It is one of the most hurtful things a person can say to me…or anyone suffering from any kind of illness. Don’t be that person.
20. I like it when people say: I understand. Me too. You are trying/working so hard. Is there anything I can do to make you more comfortable? I hope you get some relief soon. I love you. I’ll leave you alone but I am here for you. Take care of yourself. It’s okay.
21. Something kind someone can do for me during a migraine attack is: Be very quiet. Don’t cook food that smells a lot and keep any other odors as far away from me as possible. Offer to get my meds or anything else I may need from the pharmacy. Get me a Dr. Pepper or another caffeinated beverage (bonus points if it’s a McDonald’s Coke!) Warn me if you’re going to turn on any lights or anything that lights up. Let me sleep. Give me a hug. Lay quietly with me and watch T.V. until my meds kick in.
22. The best thing(s) a doctor has ever said to me about migraine is: I won’t give up on you. There are still lots of things for us to try. You try harder than anyone I know. Migraines are (expletive) hard!
23. The hardest thing to accept about having migraine is: I may have to live with it for the rest of my life. I never know if I will wake up in pain or how much I will be able to do that day. It has also showed me that people aren’t always what they seem and I have lost people that were incredibly important to me because they “could not deal with my migraines.” That was heartbreaking.
24. Migraine has taught me: I am much stronger and more resilient than I thought possible. I can turn my pain into advocacy and help others. Never judge someone else’s struggle, even if you’ve gone through it yourself. Empathy, compassion, and humor are of utmost importance.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: There are three, actually!
a.) “This is uncomfortable but I can tolerate it and it won’t last forever.” ~Tom N-D
b. “It is never too late to be what you might have been.” ~George Eliot
c.) “Won’t you look down upon me Jesus/Won’t you help me make a stand/Just got to see me through another day/My body’s aching and my time is at hand/I won’t make it any other way…” ~James Taylor Fire and Rain
26. If I could go back to the early days of my diagnosis, I would tell myself: Things are going to get better. Hope for a cure and learn how to cope/manage. You are going to meet so many incredible people on this journey who will change your life. Give all possible treatments a chance…or at least think long and hard about each one before deciding it’s not for you. Apply for disability and/or assistance services NOW…it’s nothing to be ashamed of.
27. The people who support me most are: My parents. My boyfriend Ian. My mentor/former college professor John Stifler. My two best friends, Betsy and Megg. My fellow advocates and support group friends. My team of medical professionals is pretty cool, too.
28. The thing I most wish people understood about migraine is: Migraine is there even if you can’t see it. It is part of my life every single minute of every single day. There is no cure and I have no way of knowing whether I will battle it for the rest of my life. It makes me feel sad and angry and anxious and depressed and frustrated. A lot of times, I feel guilty or am scared that people will leave me behind because I can’t do certain things.
29. Migraine and Headache Awareness Month is important to me because: I need others to know that there are people out there like them. I need people to know that things can get better. I need doctors and researchers and insurance companies and the government to understand a patient perspective. I need family, friends, loved ones, and acquaintances to know how hard I am trying and how challenging it is to live with chronic migraine.
30. One more thing I’d like to say about life with migraine is: It is hard to remember this but some of the most amazing things that have happened in my life occurred after I began battling chronic migraine. My life is still important and worthwhile. I am trying my best and I will continue to advocate for the rest of my life, even if my migraines should unexpectedly and suddenly disappear. Lastly, please don’t ever discourage anyone from telling their story. It takes great courage to tell people what we go through and, if you’re hearing our story, we trust you to support us and not to hurt us. We don’t ask that you understand everything we say. We just ask that you try to.
Check out http://www.thedailyheadache.com/30things to share your own experience with Migraine, Cluster Headache, New Persistent Daily Headache, Chronic Daily Headache, Tension-Type Headache, or a Headache Disorder by June 29, 2015 for a chance to win a 30-minute coaching session with the wonderful and talented Kerrie Smyres OR your choice of any pair of indoor TheraSpecs. Be sure to check out The Daily Headache on Facebook and follow them on Twitter: @tdhblog