My personal battle with NDPH

This is a reader-submitted story.

1. I have had NDPH for 19 months. The headaches are ALWAYS in my right eye and the back of the right side of my head. Sometimes they’ll wrap around the right side of my head into my ear and neck.
2. They started November 25, 2013. Two days after I returned from a family vacation in Mexico.
3. After the headaches started, it took 18 months to get (what I think) is the correct diagnosis. Original diagnosis was greater occipital neuralgia, then cervicogenic headaches.
4. My pain level fluctuates but is always present. I used to one or two days off a month, but none for the last 6 months.
5. My typical pain level ranges from a rare 3 (if I’m lucky that day) to an 8.
6. In addition to pain, my symptoms include: Light and noise sensitivity, my eye feels as if it’s bulging out of my head, very painful throbbing (to my heart beat), and sharp stabbings. I have trouble ‘finding’ words when I speak. When I type, I mix words up and spell them wrong. Exhaustion. I am tired all the time.
7. Treatments I have tried include: (here we go…)

• numerous medications
• cortisone shots x 3
• acupuncture
• chiropractor
• physiotherapist
• IMS treatments
• a sleep apnea study
• massage therapy
• CT Scan
• MRI
• cutting my hair off (maybe the weight was making my headaches worse)
• the Healing Hand of God (I’m not kidding)
• marijuana
• marijuana pills
• Peppermint Halo Wand
• peppermint essential oils
• yoga/exercise/stretching/meditation/relaxation
• diet (no MSG, no artificial sweeteners, no alcohol, no caffeine, going vegetarian, no wheat)

8. I take __5__ medications/supplements each day for prevention and __1__ medication when the pain becomes unbearable
9. When the pain gets bad, I retreat to my bedroom, close the curtains and sleep. For me, heat at least lifts the tightness in my neck and shoulders. Drugs do little to nothing so I only try them when I’m desperate.
10. The most frustrating part about having NDPH is: that it is very resistant to treatment.
11. Because of NDPH, I worry about: my husband and daughters. Also, my career or what’s left of it.
12. When I tell someone I have NDPH, the response is usually: Oh? Have you tried _____? Yes, yes I have.
13. When I see how little research and information exists on NDPH, I feel: Frustrated. Because it’s a fairly new classification so few people have heard of it and it’s hard to become educated in the diagnosis.
14. Having NDPH has affected my work life by: Forcing me to go on disability while I fought for my diagnosis and now appealing a gradual return to work while I have no income. It makes me so angry.
15. Having NDPH has affected by family life by: Creating a role reversal. My husband is now the cook, cleaner and nurturer because my headaches make me unable to assist most days. I miss our ‘normal’ family.
16. The one word that best describes my experience with NDPH is: debilitating
17. My best coping tools are: sleep, darkness, my heating pad and the patience of my family.
18. I find comfort in: my bed, and from my husband and children.
19. I get angry when people say: How’s your head? It’s the same answer every time and I get asked the question repeatedly by the same people. I realize they’re trying to be supportive but I’m tired of the pity or disbelief.
20. I like it when people say: Why don’t you just go lie down, I’ll take care of this.
21. Something kind someone has done for me in relation to NDPH is: My husband offering to rub my neck and make dinner (all the time).
22. The best thing a doctor has ever said to me about NDPH is: We have options. Don’t give up hope.
23. The hardest thing to accept about having NDPH is: Waking up each morning afraid of how bad the day will be.
24. Having NDPH has taught me: That I’m replaceable at work. It doesn’t matter how many years of heart and soul you put in, in the end you’re just a number and hey don’t care whether you in pain, you just need to get the job done or look elsewhere.
25. The quotation, motto, mantra, or scripture that helps me cope with NDPH is: “Just keep swimming, swimming, swimming.” ~Dory~
26. If I could go back to the early days of my diagnosis, I would tell myself: To start looking for answers sooner. Your body is telling you something is wrong. Don’t ignore the signs hoping it will just go away.
27. The people who support me most are: My husband, daughters and my parents.
28. The thing I most wish people understood about NDPH is: it’s not just a headache. It’s a headache every day, all day, of varying intensity. And as much as you say you empathize, you can’t possible understand what I’m going through.
29. Migraine and Headache Awareness Month is important to me because: I honestly had no idea there was such a thing until today. I’m so happy I found this forum and that I’m not alone.
30. One more thing I’d like to say about living with NDPH is: I am thankful for my amazing support system, and your health is the most important thing. Take care of yourself and don’t give up.

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.