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30 Things About My Headache Disorder

This is a reader-submitted story.

1. My diagnosis is: I fit under “other” headache disorders. I have a combination of chronic daily headache, cluster headaches (rare), chronic daily migraine, and atypical facial pain. I have a “perfect storm” for a headache disorder, as my headache doctor says, of structural, genetic, and hormonal factors.
2. My headache frequency is: Daily (see above)
3. The first headache I remember was: Had them since middle school, but we called them “sinus headaches”
4. My pain levels range from: On a 1-10 scale? 6-9
5. I was diagnosed in: 2005
6. My comorbid conditions include: Many, due to uncontrolled chronic pain– it really breaks down your body
7. I take __1__ pills each day for prevention and ___6_ pills to treat an acute attack
8. In addition to pain, other symptoms I experience include: Inability to focus, depression, anxiety, loneliness
9. Treatments I have tried include: Every nerve block available in the US, over 50 preventative and acute medications, a Motor Cortex Stimulator Implant, chiropractic, massage, personalized yoga work, intensive 2 week meditation retreat, in-patient drug trials, the Cefaly, trying to cure myself through mind/body work, prayer
10. During a severe headache, I: cannot function. You will not see me.
11. My headaches get worse when: My heart rate goes up, stress– even normal stress– my body takes normal stress and my hormones say “We are going to react like being late is going to literally kill you”, loudness, light, vibrations, weather changes, cold, any physical pressure to my head
12. The most frustrating part about having a headache disorder is: There is no cure for me right now. I have to wait for science to catch up. My doctors assure me I’ll be a wonderful, active grandmother.
13. Having a headache disorder causes me to worry about: Not being a good enough mother, wife, sister, daughter, friend; that my best is not good enough
14. When I tell someone I have a headache disorder, they usually say: I don’t know. I don’t normally tell anyone except new doctors. They usually don’t believe me, unless I’m seeing a specialist that deals with out-of-the-box patients
15. When I see articles about headache disorders, I think: Please give up-to-date accurate information
16. My best coping tools are: Staying connected to my people. I isolated myself for years. Now I know that loving and being loved is the best medicine. Also, pushing myself to go out and keep my connections alive even when I just want to be safe in bed, very still, watching terrible tv to keep my mind off the pain.
17. I find comfort in: People that know me, warts and all, and still love me. People that believe me/in me. Fellow sufferers. Doctors that are pissed that they haven’t been able to help me yet and are never going to give up on me.
18. I get angry when people say: Judgemental things about people that have chronic headaches or migraines, or any chronic condition that is hard to understand, and as if they know what that person is going through. I’ve found that chronic pain from cancer is the only pain that people seem to accept as real. But Morrissey said it best: “It’s easy to laugh. It’s easy to hate. It takes guts to be gentle and kind.”
19. I like it when people say: I love you, anyway.
20. Something kind a person can do for me during a severe headache is: Believe that I want to be anywhere but stuck in bed
21. The best thing a doctor has ever said to me about having a headache disorder is: Make an appointment for a hug if you need to. We’ve maxed out what’s available now, but I’ll always have time to comfort and cry with you.
22. Having a headache disorder has affected my work/school life by: Ending it.
23. The hardest thing to accept about having a headache disorder is: Mourning the life your thought you would have. Accepting your new limitations. Having to re-evaluate your purpose in life.
24. Having a headache disorder has taught me: That I don’t know everything. I was quite judgemental before, didn’t realize how much because I thought I wasn’t, about so many things. I had it so physically easy, I couldn’t imagine that having a headache everyday, all day was even possible, that losing weight could be hard, that there are some things doctors can’t fix. I’ve been humbled, thankfully. For this I’m grateful beyond belief.
25. The quotation, motto, mantra, or scripture that gets me through severe pain is: This can’t last forever.
26. If I could go back to the early days of my diagnosis, I would tell myself: Intractable pain is real. You are not crazy. This is real.
27. The people who support me most are: My family, friends, sisters and brothers in the trenches, and very smart, hard-working, compassionate doctors
28. The thing I most wish people understood about headache disorders is: No one wants it. It’s not fun to not work when you can’t. I may go to the pool or beach, but I force myself every damn time because I can’t let my kids see me in bed all day, which is honestly where I always want to be. It worries them. You will never see me without a headache and if I’m out, it took A LOT to get there. My fellow headpain people push themselves like you wouldn’t believe! We are Sisyphean. Every day, we are pushing that boulder, but for us, we wake up never knowing how big that boulder is going to be.
29. Migraine and Headache Awareness Month is important to me because: I’m tired of some of the people I love being ashamed of not being to participate in life the way they want to and the way they feel they are supposed to; of them feeling like failures and being treated like failures; of my people that work harder to show up in life than anyone I know, then being treated like they are lazy, thoughtless, and selfish instead of cheered on and loved for trying so hard.
30. One more thing I’d like to say about my headache disorder is: If I didn’t have it, I would be changing the world. One day, I’ll be cured and you better hold onto your hats because it is going to be ON.

MHAMgiveawayReader-submitted stories solely represent 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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