This is a reader-submitted story.
1. I have had chronic daily headache (CDH) for 14 years.
2. The first headache I remember is: I went to New York City as a child, maybe 8 or 10 years old, and when I got home I had the worst headache ever. It kept me in bed all day.
3. After the headache started, it took 20 years to get a diagnosis.
4. My pain level fluctuates from none (very rarely) to very severe. It’s usually moderate, but it’s exhausting to teach even with a moderate headache.
5. My typical pain level ranges from: moderate-severe.
6. In addition to pain, my symptoms include: light sensitivity, sound sensitivity, depression, anxiety, exhaustion, insomnia, polyneuropathy (drop foot), and overweight (I can’t exercise). My medications have also caused gastritis, asthma, hair loss, and kidney stones (not including side effects of ones I went off).
7. Treatments I have tried include: all possible medications, including prednisone; Botox; yoga; biofeedback; acupuncture; hypnosis; six top headache specialists; two weeks as an inpatient at Michigan’s head pain hospital; Cefaly; and heat and ice. Yoga (for relaxation and special conditions) has helped most.
8. I take 8 medications/supplements each day for prevention and 0-1 medications/supplements when the pain becomes unbearable. Nothing helps the pain except maybe ice and rest.
9. When the pain gets bad, I lie down with ice or heat on my head.
10. The most frustrating part about having CDH is having to work/teach with a terrible migraine, and no one can tell I’m unwell.
11. Because of CDH, I worry about getting headaches, not working as well as I would like, missing numerous events, and not worrying family.
12. When I tell someone I have CDH, the response is usually: How can you teach with a migraine?
13. When I see how little research and information exists on CDH, I feel: I have to give money and I wish I could help advocate.
14. Having CDH has affected my work/school life by severely reducing my production in terms of publishing and destroyed my dream, encouraged by my advisor, of being a great scholar at a research university.
15. Having CDH has affected by family life: my mother worries all the time, too much, and my husband has depression and panic attacks. I have to cancel plans often.
16. The one word that best describes my experience with CDH is: pain.
17. My best coping tools are: not giving in to headaches, as my psychotherapist used to caution repeatedly. He said it is not the headaches you will remember, but the work you accomplish despite them.
18. I find comfort in: my pet rabbit, stuffed animals, my students, movies, and my husband.
19. I get angry when people say: just take an aspirin.
20. I like it when people say: it must be really hard for you.
21. Something kind someone has done for me in relation to CDH is: it’s not your fault.
22. The best thing a doctor has ever said to me about CDH is: don’t let your headaches take over; do as much as you can in spite of them. And don’t get upset or angry when you can’t get up, because it will only make it worse.
23. The hardest thing to accept about having CDH is: why me? And that I didn’t do anything wrong.
24. Having CDH has taught me: to be kinder in general, especially to my students who have chronic pain.
25. The quotation, motto, mantra, or scripture that helps me cope with CDH is: Iyengar yoga (OM).
26. If I could go back to the early days of my diagnosis, I would tell myself: taking one preventative pill is no big deal…just wait until you’re taking 8.
27. The people who support me most are: my husband.
28. The thing I most wish people understood about CDH is: one can work and act normal even when one is in severe pain. And I don’t miss events other than teaching just because I’m lazy.
29. Migraine and Headache Awareness Month is important to me because: I like reading the blogs of other sufferers.
30. One more thing I’d like to say about living with CDH is: I want to reach out to others, especially students.
Reader-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.