The Book

When I started this blog, my greatest hope was that I could help someone, in some small way, cope with the relentless pain that NDPH brings. My life became an open book in a sense. I’ve shared things that I haven’t been able to speak out loud, yet here they are in print, glaring at me.

As it turned out, I was the one who benefited, in the form of support and friendship with people suffering around the world. And I am humbled, regularly, by the strength and endurance of perfect strangers, I’ll call them veteran NDPHer’s , who have reached out to me after 10, 20, 30 years of suffering alone.

For some time now, I have felt a push to do more.  I have discussed the idea of a book here, but have never felt up to the task, until recently.

Writing a book is a full time job, not easily accomplished with a full time headache.  I am recovering. And I am back to work. And suddenly, all the pain has a purpose for me.

I would love your help. Here’s how you can help:

  • Vote in the polls.
  • Ask questions that you want answered in the comments section below.
  • Tell me what you would like to see in the book.
  • Send me your story via email. Be sure to include how long you have been suffering as well as any encouragement for others on how to get through the day, pain management suggestions and doctor recommendations. Or simply tell me how you feel.

Living with NDPH (the book) is scheduled to be published (in ebook version) in September 2012.


The Book — 8 Comments

  1. My name in Melanie Finnegan and I am 37 years old.
    I just recently got diagnosed with NDPH. It started Sept.2010
    I am seeing Dr. Rozen at Geisinger in Wilkes-Barre PA and he is really trying everything to help and is well educated about this and really understands you and what you are going through. Not many doctors or people for that matter understand and think you are a chronic complainer. And I can take major pain! I have a headache every single day
    I am getting Botox next week, nothing has helped. Hoping this will.

    • Good luck with the botox, it has really helped my husband who has been suffering with NDPH for 2 years. Another treatment we are going to look into is nerve decompression surgery. Hoping someone on this blog has experienced that and can give us some hope?

    • Yes, though I don’t know exactly how to go about doing this.I know that you have to be currently in treatment for NDPH, but beyond that, I am not sure.

  2. NDPH hit me on 2/5/11. I wrote a book called The Dangers of Kissing and Diet Coke, subtitled What Your Doctor Doesn’t Know and Won’t Bother to Find Out. It is laugh-out-loud funny and pathetically sad as it tells the story of doctors, treatments and drugs. Fellow sufferers of NDPH will surely relate. In addition to neurological issues the love interest component makes the book sizzle. Hope you enjoy.

  3. Hello Amy, thanks for setting up this wonderful blog. 🙂

    My name is “Anonymous user” and I’ve now had NDPH about 1 year and 5 months. My NDPH started on the 1st January 2014 and has never gone away since. I’ve found ways to cope with the pain that I experience, but from time to time it gets the better of me and can make me become moody. If I become too moody or agitated, my NDPH can trigger off panic attacks which can last up to 4-5 hours. If I do have arguments with this headache, it gets worse and can take from 24-48 hours to settle down to a manageable level.

    I’m certainly not going to predict what made this headache emerge… I can come up with endless theories and hypotheses about why it came about (stress or injuries), however, before this headache had emerged I was already having family, financial and academic issues; additionally, at times I was on the edge and incredibly impatient. Certain family members used to get on my nerves and wasted so much of my time and energy, but once again I must iterate that I was experiencing emotional and psychological problems years (possibly 10 years) before my NDPH came about. These psychological and emotional issues weren’t dealt with in my teens and led me to behave inappropriately as a young adult. {For the record, I’m now 28}.

    Now, let me describe this inappropriate behaviour more accurately…

    1. Reacting angrily to criticisms, or reacting to people’s words, sentences and behaviours.
    2. Trying to prove that I was correct all the time.
    3. Offering suggestions and solutions to other people’s problems without being asked to. In other words, involving myself in problems that those around me were creating.
    4. Not focusing on my own goals, but trying to make sure others were focusing on theirs and behaving correctly.
    5. Trying hard to change those around me (who were in fact making plenty of mistakes).
    6. Trying to fix family issues and make my mother “see” that she had to change as she continued to make mistakes and treat me quite badly.
    7. Being impatient and impulsive with money. Spending money on courses and not completing them.
    8. Wasn’t able to see opportunities and focused on risks and pitfalls.
    9. Saying the wrong things at the wrong times. Being too honest and upfront.
    10. Putting pressure on myself by talking about each and every plan that I had. I was constantly seeking feedback from others.
    11. Making predictions about the future on a constant basis. Speculating about what may, might have or could’ve happened.
    12. Spending too much time on computers and social networks. Not living enough in the “real world”.

    This list should reveal to you my state of mind prior to the emergence of my headache.

    When I do behave well my headache pain can be very mild. When it is mild I get to study mathematics, philosophy, physics and psychology. I must study psychology and about the brain in order to find solutions to my headache issues. I hope that I’ll continue to behave well and reduce the amount of stress and tension (in relationships) that I experience.

    I am hoping that my headache will soon go away, but I must also prepare myself mentally for other undesirable outcomes.

    The best remedy for me is to stay out of trouble, avoid taking too many medications and to relax myself even when I’m not in the most comfortable environments. I want to be focused on solutions rather than problems over the next few months.

    Thanks for listening. 🙂

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