This is a reader-submitted story.
1. I have had NDPH for over 21 years.
2. It started on a Sunday afternoon in January, 1994 during my sophomore year of college:
3. After the headache started, it took 20 years to get a diagnosis, but I had self-diagnosed myself before that time..
4. My pain level fluctuates and gets worse over the course of the day, usually peaking in the evening.
5. My typical pain level ranges from: 4 – 8
6. In addition to pain, my symptoms include: nausea, light and sound sensitivity.
7. Treatments I have tried include: Most preventative migraine treatments, topamax, cymbalta, imitrex, butterbur, physical therapy, massage, acupuncture, chiropractor.
8. I take 1 medications/supplements each day for prevention (L-Theanine, also known as green tea pill) and 0 medications/supplements when the pain becomes unbearable
9. When the pain gets bad, I: lay down in a dark room with an ice pack on my head.
10. The most frustrating part about having NDPH is: never getting a break from the pain.
11. Because of NDPH, I worry about: life having any meaning.
12. When I tell someone I have NDPH, the response is usually: “How can you have survived that for so long?”
13. When I see how little research and information exists on NDPH, I feel: depressed and despondent.
14. Having NDPH has affected my work/school life by: Being all I could muster up the strength for.
15. Having NDPH has affected by family life by: robbing me of a chance of marriage and children. The NDPH is just too much. It also takes away from me being able to enjoy family get togethers.
16. The one word that best describes my experience with NDPH is: unrelenting.
17. My best coping tools are: ice, massage.
18. I find comfort in: ice, massage.
19. I get angry when people say: “You’re probably going to have a headache for the rest of your life.” (I’m looking at you Dr. Jerk)
20. I like it when people say: “You are very strong” or “Can I do anything to help?”
21. Something kind someone has done for me in relation to NDPH is: everything my mom has ever done to try and comfort me.
22. The best thing a doctor has ever said to me about NDPH is: “You are a puzzle”.
23. The hardest thing to accept about having NDPH is: there being zero break from the pain.
24. Having NDPH has taught me: that healthy people are more fortunate than they realize.
25. The quotation, motto, mantra, or scripture that helps me cope with NDPH is: On a bad day: Eff you headache. Otherwise: Whatever doesn’t kill you makes you stronger.
26. If I could go back to the early days of my diagnosis, I would tell myself: Go see Dr. Rozen in the first 2 years.
27. The people who support me most are: my family.
28. The thing I most wish people understood about NDPH is: it needs more support for research and a cure.
29. Migraine and Headache Awareness Month is important to me because: there are so many of us silently suffering.
30. One more thing I’d like to say about living with NDPH is: It is impossible to explain to anyone who has not lived with NDPH how broken I feel. If only the pain would break at all. Lastly, only 2 things have ever helped at all. Midrin helped one night and never worked again, but I still remember the feeling of the pain going away. Also, L-Theanine is the only thing I have found that lessens the pain. It is not gone, but the intensity is lower. I take 400-600 mg/day and recommend that anyone with NDPH look into it. I buy Source Naturals L-Theanine 200 mg on Amazon in case that helps anyone.
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.