Living with Chronic Daily Headache

This is a reader-submitted story.

1. I have had chronic daily headache (CDH) for 9 months, but have had severe headaches since my car accident
2. The first headache I remember is: After my car accident 6.5 years ago
3. After the headache started, it took 5 months to get a diagnosis.
4. My pain level fluctuates
5. My typical pain level ranges from: 6 – 8
6. In addition to pain, my symptoms include: sensitivity to light and sound, chronic fatigue, irritability, memory issues, lack of energy, need for constant rest
7. Treatments I have tried include: Medications (Amitriptyline 10mg, Topomax 100 mg, Axert, Maxalt), massage, cupping, chiropractor, essential oils: lavender, stress away, thieves), craniosacral therapist, naturopath, doctor of natural medicine, liver cleanse, nerve blocks, trigger point injections, subcutaneous needling, acupuncture, homeopathy, peat bath, tens unit, heat + ice, hydrotherapy, psychotherapist, vitamins and supplements, yoga, daily stretching and ball rolling, elimination diets + healthy foods, the list goes on.
8. I take magnesium, omega 3, vitamin D, curcumin and stress B-complex each day for prevention and nothing when the pain becomes unbearable. I haven’t found anything yet that relieves my pain when it’s unbearable.
9. When the pain gets bad, I: Lay down in a dark room with no noise and ice on my head.
10. The most frustrating part about having CDH is: Not having a normal life. I can’t do the simplest daily activities that I used to be able to do. Also, not being able to find any treatments that help me cope with the pain. Hopefully one day I find what works for me, but it’s a very long process.
11. Because of CDH, I worry about: My future. I worry that I won’t be able to find a partner in life that will want to deal with my headaches and accept me for the way I am. I also worry if I’ll ever be able to handle having kids.
12. When I tell someone I have CDH, the response is usually: “make sure you drink enough water” or “I don’t understand how a headache can last that long”
13. When I see how little research and information exists on CDH, I feel: upset and frustrated. It makes me want to feel better so I can help donate or volunteer.
14. Having CDH has affected my work/school life by: I have had to quit my job and will be moving back in with my parents next month. It has put my career on hold or maybe even permanently.
15. Having CDH has affected my family life by: I don’t have a husband or kids, but it has severely affected my social life. I don’t make plans with my friends to go out and if I do see them I can only handle one person at a time. They will come to my house and sit in the dark with me. But I can’t go out in a group anymore or be in public.
16. The one word that best describes my experience with CDH is: debilitating
17. My best coping tools are: my family/friends, my doctors, ice, sleep, stretching
18. I find comfort in: the fact that I’m not alone. Before this happened I didn’t realize how many people suffered from CDH, migraines etc. I do not wish this on anyone, but it’s nice to know there are people out there who understand what I’m going through and can relate to me on a level that my friends and family can’t.
19. I get angry when people say: they’ve had headaches too and know what it’s like.
20. I like it when people say: they’re praying for me or thinking about me. Even though I can’t be there physically, it’s nice to know I’m still in their thoughts.
21. Something kind someone has done for me in relation to CDH is: My mom and my nanny both drive me to all my appointments and help clean and cook my meals.
22. The best thing a doctor has ever said to me about CDH is: that I’m young and even though it will take some time he knows I will get better. And that there are a lot of options and treatments left to try. To spend time focusing on myself and get back in touch with my body since I had been neglecting it for so long.
23. The hardest thing to accept about having CDH is: that I may have to deal with this pain the rest of my life. That I probably won’t ever have the same lifestyle I used to. But I’m trying to look at that as a positive thing. That going forward I have and will continue to make changes in my life in order to lead the most authentic life possible.
24. Having CDH has taught me: to slow down. To spend more time evaluating my life and not be complacent. It’s also taught me to appreciate little things and be grateful for what and who I have in my life.
25. The quotation, motto, mantra, or scripture that helps me cope with CDH is: “For what it’s worth: it’s never too late to be whoever you want to be. I hope you live a life you’re proud of, and if you find that you’re not, I hope you have the strength to start over.” F Scott Fitzgerald
26. If I could go back to the early days of my diagnosis, I would tell myself: not to stress and worry so much.
27. The people who support me most are: My mom and nanny
28. The thing I most wish people understood about CDH is: that it’s real and very debilitating.
29. Migraine and Headache Awareness Month is important to me because: it brings together a community of people who support and understand each other. And it allows us to slowly change the way the rest of world views us and help them understand.
30. One more thing I’d like to say about living with CDH is: I would not wish this on anyone, but without this happening to me I wouldn’t have learned some very important life lessons. As a young 26 year old, I have been given an opportunity to make changes in my life and learn lessons that most people never learn. I try to be as optimistic as possible about my situation and for everyone else out there remember how important gratitude is. Even in the darkest of days, remembering what you do have in your life can help you get through the day.

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.