What’s it like for you to live with new daily persistent headache? The 30 Things About Your Life With NDPH meme is a great way to share your experience. To share your answers on The Daily Headache, copy and paste the questions and your response into the submission form at the end of this post. If you have a blog, you’re welcome to publish the questions and your answers there (but please link to this page). Even if you don’t wish to share your answers publicly, I encourage you to think about the questions. Whether you share them with loved ones or just keep them for yourself, reflecting on your life with NDPH can provide helpful insight.
1. I have had NDPH for ____ years.
2. It started after: (Or just when it started if you didn’t have a precipitating event)
3. After the headache started, it took ______ [weeks/months/years] to get a diagnosis.
4. My pain level is steady/fluctuates
5. My typical pain level ranges from:
6. In addition to pain, my symptoms include:
7. Treatments I have tried include:
8. I take ____ medications/supplements each day for prevention and ____ medications/supplements when the pain becomes unbearable
9. When the pain gets bad, I:
10. The most frustrating part about having NDPH is:
11. Because of NDPH, I worry about:
12. When I tell someone I have NDPH, the response is usually:
13. When I see how little research and information exists on NDPH, I feel:
14. Having NDPH has affected my work/school life by:
15. Having NDPH has affected by family life by:
16. The one word that best describes my experience with NDPH is:
17. My best coping tools are:
18. I find comfort in:
19. I get angry when people say:
20. I like it when people say:
21. Something kind someone has done for me in relation to NDPH is:
22. The best thing a doctor has ever said to me about NDPH is:
23. The hardest thing to accept about having NDPH is:
24. Having NDPH has taught me:
25. The quotation, motto, mantra, or scripture that helps me cope with NDPH is:
26. If I could go back to the early days of my diagnosis, I would tell myself:
27. The people who support me most are:
28. The thing I most wish people understood about NDPH is:
29. Migraine and Headache Awareness Month is important to me because:
30. One more thing I’d like to say about living with NDPH is:
To submit your post, complete the form below. You must fill in every field for your submission to go through (your name and email will not be published and I won’t send you spam). Within 24 hours, I will moderate it (to prove it’s not spam) and it will be published as an individual post with a URL you can share. Check the 30 Things Meme category for your post then click on your post title to get the URL.
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If you have trouble with the submission form, please email me at kerrie[at]thedailyheadache[dot]com.
Thanks to Invisible Illness Awareness Week for the idea for a 30 things meme. Readers were so receptive to the 30 Things About My Invisible Illness meme that I knew we needed something similar for Migraine and Headache Awareness Week.
1. I have had NDPH for 4 years
2. It started 10 days after a skiing accident
3. It took just less than 1 year to get a diagnosis
4. My pain level is steady
5. Pain ranges from 7.5/10- 8.5/10 very intense pain
6. I have light sensitivity and trouble sleeping
7. Treatments I have tried include numerous medications (mirtazipine, topirimate, amitryptaline, propranolol, sodium valproate, pizotifen, triptan drugs, erenumab- injections)
I have had sub occipital nerve blocks, magnesium sulfate infusion, accupuncture, botox injections
8. I take duloxetine 30mg daily for prevention – I am trialing this- and don’t take any medication when unbearable because none of them help
9. I use an ice pack on forehead and lie down
10. Most frustrating thing is waking up and going to bed with pain all day every day
11. I worry about never being pain free again
12. People respond sympathetically but not empathetic ally- I.e. they can’t really understand the severity of it
13. I feel disheartened by lack of research
14. I am having to take a year off university and during school I missed lots of days and I also now miss lots of social occasions.
15. Sometimes I feel I can alienate my family because the pain is so bad I withdraw myself.
16. Excruciating
17. Using ice packs
18. I find comfort in family and friends
19. I get angry when people say ‘get well soon’
20. I like when people say they will always be there for me no matter what
21. Driving home from university to spend a week with me
22. New treatments will continue to be developed
23. That I might never have a pain free day again
24. To cling to the happy times
25. Tomorrow is a new day
26. To take one day at a time
27. My girlfriend, my best friend and my parents
28. That the pain is constant and never goes away
29. I don’t know anything about awareness month
30. I am trying to be positive but feel extremely hopeless at the moment