30 Things Meme

Life with NDPH

This is a reader-submitted story. Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.

1. I have had NDPH for __8__ years.
2. It started after: June 2007, just before my son’s 1st Birthday.
3. After the headache started, it took 5 years to get a diagnosis for NDPH.
4. My pain level is steady/fluctuates: Fluctuates.
5. My typical pain level ranges from: Anywhere between 2 to 9 (maybe 9-3/4 on some days…)

6. In addition to pain, my symptoms include: Irritability, dizziness, nausea, fatigue, depression.
7. Treatments I have tried include: Acupuncture, acupressure, massage, chiropractic, oxygen, biofeedback, ice packs, electro-stimulation (TENS) Botox (5 times), nerve block injections (3 times), TMJ splint, meds, meds, meds and more meds. Cannibis, alcohol.
8. I take 8 vitamin supplements and thyroid meds each day for prevention and tramadol, hydrocodone, ice packs and cannibis when the pain becomes unbearable
9. When the pain gets bad, I: have to lie down with an ice pack, ear plugs/muffs in a dark room.
10. The most frustrating part about having NDPH is: Having little to no patience when my children get a little too loud or don’t listen. I fly off the handle much too easily. My kids are 10 and 8 and only know me as being irritable, short-tempered and in pain.
11. Because of NDPH, I worry about: Losing hope. I can’t imagine ever reaching the point of ending my life but losing purpose and responsibility is a real factor.
12. When I tell someone I have NDPH, the response is usually: “oh, like a migraine? I get headaches sometimes too. You should try (fill in the blank).”
13. When I see how little research and information exists on NDPH, I feel: Dejected. Like it’s a rubber-stamp diagnosis because doctors don’t really know what it is.
14. Having NDPH has affected my work/school life by: Causing me to pass up on promotions, advancements because I can’t add more stress to my life on top of NDPH. Who knows how much money I’ve passed up by telling my bosses ‘no thank you’ or not pursuing new/other positions?
15. Having NDPH has affected my family life by: changing who I used to be. I was happy, outgoing, helpful, patient. Now my kids only know me as being Headache Dad. My wife is frustrated because she’s seen how much I have changed over the last 8 years (we’ve been together for 20).
16. The one word that best describes my experience with NDPH is: Hell
17. My best coping tools are: Ice, quiet.
18. I find comfort in: Reading, movies, television, playing with my kids when I can.
19. I get angry when people say: “you need to see my doctor/chiropractor. They can fix you.”
20. I like it when people say: “I’m sorry. That’s terrible. Let me know how I can help.”
21. Something kind someone has done for me in relation to NDPH is: My company has really tried to accommodate me and put me in a position to keep me on board until I’m more healthy. They see my value and don’t want to quit because I can’t handle things anymore.
22. The best thing a doctor has ever said to me about NDPH is: We’re still learning. Someday there will be a treatment that works.
23. The hardest thing to accept about having NDPH is: No known cause/cure. It is related to something. Too many people are suffering the same way for there to not be a connection.
24. Having NDPH has taught me: Not to complain about the little things.
25. The quotation, motto, mantra, or scripture that helps me cope with NDPH is: One day this will all be over.
26. If I could go back to the early days of my diagnosis, I would tell myself: Don’t take all of those meds. They were throwing anything and everything at me to just get me back out the door and on to their next patient.
27. The people who support me most are: My family, wife and kids. My parents. Even my employers (I have missed some days over the last 8 years but for the most part I still work everyday, except when I filling out questioners on the clock). ;o)
28. The thing I most wish people understood about NDPH is: Just because ‘you don’t look like you’re in pain,’ doesn’t mean you’re not miserable all the time. It’s amazing what you can get used to… I really do try to do all that I can to keep up with everyday life, but some days are worse than other and I need some down-time.
29. Migraine and Headache Awareness Month is important to me because: Awareness. I am truly floored by seeing how many people are affected by the same thing I am yet every time you tell someone about NDPH the majority of people have never even heard of it.
30. One more thing I’d like to say about living with NDPH is: Someday. Someday this will be figured out. They will find the root cause and then one day they will find a real treatment, solution.

3 thoughts on “Life with NDPH”

  1. I have had NDPH for over a decade and my quality of life is rubbish. I’ve had to give up on the idea of accomplishing any of the life targets I projected as accomplishing when I was a young man. What really hurts me is that the establishment and by that I mean the people who really run our planet are very much aware of what causes this just as they do for every single kind of cancer mutation or for that matter any ailment in existence. The technology is so advanced in the upper echelons of occult science that this is a joke for them – a joke at the expense of us lemmings. The medical establishment and unwitting doctors throw mostly useless pharmaceuticals at NDPH patients despite the fact that their puppet masters have long since unlocked the secrets of the brain in their clandestine laboratories and know exactly what channels/receptors/neural pathways are activated or turned off by X, Y or Z – the brain is their playground but we are only privvy to the obsolete money making facade which is designed to keep the majority chronically ill or worse.

    In case any of your headaches are caused by an eye imbalance you may wish to try wearing a patch over one eye for three days. If the headache dissipates, the problem is an eye imbalance and you will have to look around for special glasses to keep the eyes working together correctly. Desperate times…

  2. I have had a headache for 615 days. Diagnosed with NDph 6 months ago. Combination of cannabis oil and botox treatments allow me to function but just barely. The prospect of living with this for the rest if my life is intolerable and I see only one way out. So depressed.

  3. I feel for you I’ve had it a year and I’m the same I’m limited to what I can do my headaches stop me
    From doing a lot like my kids are 10 and 12 and I have to tell them to be quiet so often as my headaches are bad doctors have ran out of options on medication I had a MRI a year ago the hospital has just gave the doctors a list of drugs to try on me before I go back which I have tried and nothing has worked so I know what it’s like and people don’t understand how bad it is I can’t even concentrate as it will just set it off so I’m not sure what they will do for me next so your not on your own xx

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