30 Things About Amy’s Life With Chronic Daily Headache
This is a reader-submitted story. Want to share your 30 Things? Here’s how: Migraine & Headache Disorders 30 Things Meme.
1. My diagnosis is: new onset persistent headache that is migraneous
2. My migraine attack or headache frequency is: I live every day with constant, dull pain. With a better management plan, I now only have attacks about 1-2 times a week.
3. The first migraine attack or headache I remember was: Fall 2014.
4. My pain levels range from: 3-9. I live at a 3-4; attacks are 5-8; I’ve experienced a 9/10 once.
5. I was diagnosed in: 2015
6. My comorbid conditions include: chronic colitis, depression
7. I take __7__ pills each day for prevention and __2__ pills to treat an acute attack
8. In addition to pain, other symptoms I experience include: numbness/tingling in arms, legs and face; extreme fatigue; cognitive dysfunction; nausea; photophobia; phonophobia; vertigo
9. Treatments I have tried include: 8 different preventatives; 2 other acute medicines; billoptical nerve blocks; Botox; dietary changes; massages; ice packs; yoga; daith piercing
10. During a migraine attack or headache, I: need to get to a quiet, dark room where I can lay down with ice packs wrapped around my head as soon as possible.
11. My migraine attacks or headaches are triggered or get worse when: I’m under increased stress; barometric pressure changes; food triggers (gluten, tapioca, active yeast, honey, caffeine, alcohol, etc.); if I wear glasses, headband or anything that puts pressure behind my ears; when I continue to push instead of stopping to rest; just because the migraine minions decide to…
12. The most frustrating part about having migraine or a headache disorder is: feeling robbed of a life I once knew by an uninvited guest and feeling unreliable when I have to cancel plans.
13. Having migraine or a headache disorder causes me to worry about: people I’m cancelling plans on; job security
14. When I tell someone I have migraine or a headache disorder, they usually assume or say: “I’m so sorry.” or “I had a migraine once. It’s way worse than just a headache.”
15. When I see ads or articles about migraine or headache disorders, I think: I honestly just laugh. I suppose I’m a bit cynical when I see an ad.
16. My best coping tools are: My faith that one day Jesus will restore all of creation including my body; prayer/meditation; yoga; playing volleyball
17. I find comfort in: Scripture; my bed; ice packs; encouraging words from loved ones
18. I get angry when people say: “Well at least it’s not something worse.”
19. I like it when people say: “I’m here for you, I care about you even when you’re not able to get together as much as I know you’d like.”
20. Something kind a person can do for me during a migraine attack or headache is: cook me food for the next couple of days; send me encouraging text messages; give me space; let me jump back in once I’m able without making it a big deal
21. The best thing a doctor has ever said to me about having migraine or a headache disorder is: “What you’re experiencing is unacceptable. It may take awhile to find the right combination of meds but we will find it.”
22. Having migraine or a headache disorder has affected my work/school life by: making me realize my worth is not in my performance, productivity or contributions to an effort. I have worth because I have been claimed as a child of God. Nothing I do or don’t do can change the way God loves me and ultimately, that’s all that matters. This has been one of the biggest and hardest lessons for me to learn as I’ve had to take off the last year of graduate school and missed a LOT of work. I’m thankful for an accommodating employer and being able to work from home or during non-traditional work hours.
23. The hardest thing to accept about having migraine or a headache disorder is: I am not in control. At all.
24. Having migraine or a headache disorder has taught me: There’s always more going on in someone’s life than what meets the eye. As I’m learning what it looks like to live life in chronic pain, I’ve become more sensitive to the unseen pains of others. It may not be chronic migraine or some other physical illness, but it seems like most people have SOMEthing that’s a major burden to them. I’ve learned to care for others as I would like someone to care for me in this fragile state. Often times that means honestly giving people the benefit of the doubt, being flexible with no strings attached, offering to make other arrangements when they’re in a bind, and recognizing there are more important things in life than presentations and deadlines.
25. The quotation, motto, mantra, or scripture that gets me through hard days is: Lamentations 3:19-32; Isaiah 43:1-2; “Just for today”
26. If I could go back to the early days of my diagnosis, I would tell myself: I was offered Botox early on in my diagnosis but was skeptical and unsure. Among other things I was still in a stage of processing/accepting tat I actually had chronic migraine. For someone who never experienced a headache or migraine until a couple years ago, it all seemed so foreign. Now, 2 years later, I understand that Botox is the most effective preventative available for me. I’m hopeful I’ll continue to see improvement using it.
27. The people who support me most are: my parents. Wow. They’ve gone above and beyond. I am indebted forever.
28. The thing I most wish people understood about migraine or headache disorders is: they are debilitating and life-changing. They affect your mind, body and spirit – everything about you.
29. Migraine and Headache Awareness Month is important to me because: for as many people who say they have experienced a headache or migraine there seems to be a real lack of knowledge, perspective and empathy for what a migraine/headache disorder can entail and how to support those going through it.
30. One more thing I’d like to say about migraine or my headache disorder is: Let’s remain hopeful. I often feel hopeless and just stuck. Let’s choose to remain hopeful for an increasingly better quality of life, the ability to fulfill our dreams and dare I say, even find a cure.
Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.