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My life with Chronic Daily Headache

This is a reader-submitted post.

1. I have had chronic daily headache (CDH) for _17___ years.
2. The first headache I remember is: from a concussion when I was 8, but I believe migraine started when I was 6.
3. After the headache started, it took ___1 year from the time they became daily___ [weeks/months/years] to get a diagnosis.
4. My pain level is steady/fluctuates Fluctuates
5. My typical pain level ranges from: 5-7
6. In addition to pain, my symptoms include: photophobia, neck pain, nausea, tooth pain
7. Treatments I have tried include: Way too many to list (75+ preventative, abortive, and alternative treatments)
8. I take _5___ medications/supplements each day for prevention and __2__ medications/supplements when the pain becomes unbearable
9. When the pain gets bad, I: try to lay down with an ice pack when possible.
10. The most frustrating part about having CDH is: the unpredictability of when the pain will be severe and when it will be tolerable.
11. Because of CDH, I worry about: being able to get things done that have to be done and not letting others down.
12. When I tell someone I have CDH, the response is usually: disbelief that I can have a headache EVERY day.
13. When I see how little research and information exists on CDH, I feel: frustrated that not more is being done to find treatments for such a debilitating disorder.
14. Having CDH has affected my work/school life by: not allowing me to do everything that I want to with my students.
15. Having CDH has affected by family life by: not being able to attend all family functions
16. The one word that best describes my experience with CDH is: all-encompassing (no single part of my life has not been touched and affected by CDH.)
17. My best coping tools are: acceptance of the situation
18. I find comfort in: music and time alone
19. I get angry when people say: Oh, I get headaches all the time, too. After a couple of Tylenol I’m good to go.
20. I like it when people say: Let me do it. You rest.
21. Something kind someone has done for me in relation to CDH is: treated me with respect and kindness
22. The best thing a doctor has ever said to me about CDH is: We will do this together.
23. The hardest thing to accept about having CDH is: Knowing when I have to say no and slow down to take care of myself.
24. Having CDH has taught me: self-reliance and resilience
25. The quotation, motto, mantra, or scripture that helps me cope with CDH is: Don’t think of all the misery, but of all the beauty that remains. – Anne Frank
26. If I could go back to the early days of my diagnosis, I would tell myself: It is okay and necessary to grieve for all I have lost, but to also rejoice and celebrate all that you can accomplish that you didn’t know was possible.
27. The people who support me most are: family
28. The thing I most wish people understood about CDH is: I can’t control how I feel.
29. Migraine and Headache Awareness Month is important to me because: more people need to know the scope disability caused by migraine and other headache disorders.
30. One more thing I’d like to say about living with CDH is: Everyone’s experience with CDH is different. Respect each individual’s story as their truth.

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.

3 Responses to My life with Chronic Daily Headache

  1. Thanks for sharing your story! I love your final sentence: “Respect each individual’s story as their truth.” While there are similarities among us, we are all different, for sure. There’s a tendency, even among people with CDH, to assume everyone has the same experience. Recognizing everyone’s individuality is crucial.

    Take care,
    Kerrie

  2. J doyle says:

    Thank you! My son has had migrianes since he was in 2nd grade. He has had DCM for about a year now. Its horrible. He has missed so much school. Peers tease him, teachers harass him. I just want to find a cure. My easy going, happy child who used to talk of chemical engineering and pre-med now spends most days in bed. It just breaks my heart. He feels like no one believes him. No on understands. Including the doctors.

    • I’m so sorry you have to watch your son go through this. Best of luck finding an effective treatment. They’re out there, though it can take some time to find the best one for each person.

      Take care,
      Kerrie

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