NDPH Stories Wanted

Is a book on NDPH needed?

I’ve been toying with the idea of writing a book about New Daily Persistent Headache for years.  There doesn’t seem to be one clear place to find information about it, and advice is scattered around the web, in forums and on a few random blogs.  I would like to write the book that I wish I could have read when I was first diagnosed.

I have recieved countless emails over the past two years from people all over the world suffering, looking for help and support. I’ve collected dozens of stories, many similar to my own.

I need more! If you would like to share your story, or be interviewed for the book, please contact me in the comments below or via email. I’d love to hear more about your thoughts and struggles, the medications you have tried (successful or not) and the alternative therapies you’ve explored. I want it all.

The focus would be on personal stories as well as treatment options.  I’m hoping to consult with a few well known neurologists that treat NDPH.

What are your thoughts on this? Suggestions? Ideas? Please share your opinion in the comments section and participate in the poll below.

As always, wishing you a low pain day,

🙂 Amy



Comments

NDPH Stories Wanted — 28 Comments

  1. Hi Amy:

    I too am weak and invincible! Your last post says it all. I would love for you to write a book and believe it would be very helpful. I’d love to even help! I often think that our stories should be on Oprah.

    Our lives are very similar. I am a mother of 3. 2 girls who are 6 1/2 and 4 and a little guy who is 2. My NDPH started in December of last year. I congratulate you on your strength and courage. I would love to share my story and experiences with you. I also know a 20 something guy who has had it for 7 years and he has tried it all!!! We’re both located in Madison, Wisconsin.

    I’d really like to know what meds you are currently taking and supplements. I’d also like to know the name of the neurologist that you see, like and trust.

    God Bless,

    Michelle Berg

  2. Hi Amy,

    I think a book would be fantastic idea. I am from Australia and most of the neurologists here haven’t even heard of NDPH. I have had to do all my own research and have convinced my sister (who is doctor) to put me on the doxycycline/singulair combo for a 3 month trial to see if it helps. I printed out all the information I could find, joined the MD junction support group, and even emailed Dr Todd Rozen MD at Geisinger. How did you go on the combo? Are you still taking any of the medications?

    A book about NDPH covering diagnosis, research, medications, success stories etc would be invaluable to sufferers and also to physicians unfamiliar with the disorder.

    I have had a constant headache since November 2009 after contracting a viral illness in October.

    If I can help in any way please let me know.

    Regards

    Wendy

    • Stop with the drugs, ive found they only make the problem worse. Try this… 3 seeds, ajwain , kala jeera and methi seeds (more detail in my post below) It really does help.

  3. October 30, 2004 at 5:00 p.m. Stephanie started screaming her head hurt! Since then, she has had a headache! Yes, we have been to Mayo Clinic, yes, Dr. Perry has done two nerve decompression surgery and the back headache is gone, but the front is still there! Very bad!

  4. A book would be great. 17 month sufferer/guinea pig, but i found natural relief… A combo of 3 seeds, ajwain , kala jeera and methi seeds(found in an indian grocery) I grind equal parts of each in a coffee grinder an take a spoonful several times a day. I have felt GREAT for the past 2 months. Unfortunately I am building a tolerance to the seeds so im looking for alternatives to try now. If you suffer from NDPH you MUST try this recipe. (feel free to contact me about the book)

  5. hey amy!
    i think a book would be a wonderful idea! it took me 2 1/2 years of daily headaches to find a diagnosis. i had read something about intractable migraines and strokes and i was convinced i was going to die and my doctors weren’t going to figure it out in time to help. i read the mayo clinic’s book on headache and it was the first time i’d ever heard of chronic daily headache and ndph. i showed it to my dr., and from there i was finally pointed to some specialists and medications. i can’t say if i was relieved to find out i wasn’t dying, but instead i might have a daily headache forever, or maybe magically wake up one day and it would be gone as quickly as it began. i can say it really did help to have a name for my condition finally. with this “invisible” disease, you are so often doubted by doctors, it’s hard not to doubt yourself! i definitely felt validated, and i think it would be wonderful to be able to help someone else who is suffering to at least find out they aren’t crazy, this thing is real, and it has a name, and there are lots of other people who have it. (unfortunately, no “cure” but we will take what we can get!) i have seen many specialists and pursued quite a lengthy list of treatments, and i’m always saying that even though nothing has helped me, someone should be able to benefit from my knowledge, my experience, otherwise, it seems like such a waste. i think this book would be a fantastic opportunity to possibly help someone else benefit from all we’ve tried and failed, hopefully eventually benefit from what we’ve tried that has succeeded! i firmly believe this condition requires the patient to be very educated because so many doctors, even neurologists, know nothing of this thing that is often what defines our lives. all our fellow sufferers, veterans and the new kids, have a story to tell.

  6. Hi, I was just wondering if you are still looking for more stories because I have an interesting case of this ailment and I think it is different because it started when I was about 10 and has continued until now (18) with no relief. I have tried so many different things, including some that I doubt others have tried. If you are interested in my story let me know and I’ll put together a write up for you. It will take at least two or three pages so I just want to make sure you really want it before I put in all the work! You can contact me at my given email addresses and I doubt I’ll remember to check back here for a response so definitely email me.

    Sincerely,

    Trevor

  7. after 41 years of migraine and about 12 of daily head pain (quite possibly NDPH, from all i have been reading) i have experiences to share. if you would like to contact me, feel free to email, and we could talk. i had 4 impacted wisdom teeth out at age 20, but that probably isn’t the cause of the pain for me. it’s more likely that it was the unknown lyme-like illness i had at age 29, which put me to bed for a month and left me unable to care for my 3 babies. so now, yes, i am 70, and have been given every diagnosis under the sun and moon, with triptan drugs the ONLY THING making it possible to have a life, and to work part-time. i’ve been to way over 100 doctors and practitioners of every kind, many who were absolutely sure that they knew how to cure what they thought i had. hahahahaha.

  8. I suffed from heat stoke at work and was sick for day that is when my head pain started and it has never gone away. Its been almost 2 years now with no end. I am on topamax and up the amount every 6 weeks now working on getting to where I need to be I hope to be pain free one day. I hold that hope. I have came a long way. Thanks for doing this for all of us…

  9. My Daughter is 13 and has been dx with NDPH. As a mother I am at the end of my rope, seeing her in such pain kills me! She has been on every med they could possible put her on including topamax . She has seen just about every type of Dr. and she has missed so much school. She has had this for 3 months now and I dont know how much more she can handle. Im very worried for her. If anyone has anyother alternatives please share. mstrose2000@yahoo.com
    Thank you,
    Lisa Moore

  10. Lisa,
    There are quite a few mothers with children suffering from NDPH on the MD junction NDPH support group website. They can definitely offer other ideas as far as medications, alternative therapies etc as well providing emotional support.
    http://www.mdjunction.com/ndph
    They have been a great help throughout my struggle with NDPH.
    Best wishes
    Wendy

  11. I think a book about NDPH would be amazing. I have had my headache for seven years now, and I can still remember the day it started when I was 14. It has changed my life completely, and for so long I thought I was alone. Most doctors made me feel even more alone, to the point where I stopped asking for help at all and learned to live with it, through high school, college and now grad school.

    It’s hard for family and friends to understand, and even harder for them to remember to ask me how I’m doing, since they cannot see the pain directly, like you can with a broken leg. But sometimes all I need is a simple, “How’s your head today?” But it’s easy to understand when they get tired of hearing the same answer, “It. Hurts.”

    I would absolutely love to participate in helping with the book and telling my story. I started dealing with my headache when I was 14 and many of the drugs I tried were mood modifiers. (And let’s be real – a 14 year old plus mood modifiers is never a good thing! I had enough mood swings, thanks!) It has made me who I am today, and it has certainly made me a stronger person, but I’d still really like for it to, you know, go away.

  12. Amy,
    I feel your pain too. NDPH sufferer of nearly four years. I have read everything that is out there on the topic and it is very little. I read most of it the day I was diagnosed and there has been little added since. A book is most needed. I’d be glad to contribute.

  13. Hi Amy, have just been reading ur most recent posts &I have found them helpful &I amusing! 🙂 I have suffered with what has been diagnosed as NEPHEW for 11 yrs following a bad sinus infex &I flu that put me n the hospital x10 days. I also have fibromyalgia &I severe autoimmune diseases (but not headaches) run n my family. I have tried EVERYTHING with no substantial relief. Was @ MHNI x 4wks n 2005the &anger saw Rozen only briefly as he wasn’t my primary &I he was still researching & developing his main theses re:the NDPH. Most recently @MHNI Diamond Headache Clinic n Chicago x10 days &I was diagnosed by Dr. G. Urban with NDPH. He has me on MAOI (nardil), seroquel, keppra (antiseizure), plus IM DHE & Toradol as abortives. I also have a spinal cord stimulator implant n my neck & had 1st series of boris injex @ 1 1/2 mos ago. The meds from chicago have lessened my pain more than anything ever has but still n daily pain & side effects & precautions stink! Have been on full disability since 2009 (used to b psychologist). If u r still thinking @ a book or have already done one, I would love to help! This condition is absolute best hell & if I could help even one person (or myself), it would b more than worth it! R u still seeing Rozen? Has he helped u? He is @ 2 hrs from me but waiting list is forever long so going to see a new doc (Lisa Lore Garten n Cooperstown, NY) recommended by my rheumatologist 11/11/11. Am extremely curious to know if Rozen is worth the wait………..Thanks for sharing your stories & experiences & pls contact me if I can b of any help! I m always home! Best, Karen

  14. Hi Amy, have just been reading ur most recent posts & have found them helpful & amusing! 🙂 I have suffered with what has been diagnosed as NDPH (& @ 100 other things for 11 yrs following a bad sinus infex & flu that put me n the hospital x10 days. I also have fibromyalgia & severe autoimmune diseases (but not headaches) run n my family. I have tried EVERYTHING with no substantial relief. Was @ MHNI x 4wks n 2005 & saw Rozen only briefly as he wasn’t my primary & he was still researching & developing his main theses re:the NDPH. Most recently @ Diamond Headache Clinic n Chicago x10 days & was diagnosed by Dr. G. Urban with NDPH. (FYI: FANTASTIC facility with private room, separate units for adults, geriatrics & secure pediatics). He has me on MAOI (nardil), seroquel, keppra (antiseizure), plus IM DHE & Toradol as abortives. I also have a spinal cord stimulator implant n my neck & had 1st series of botox injex @ 1 1/2 mos ago. The meds from chicago have lessened my pain more than anything ever has but still n daily pain & side effects & precautions stink! Have been on full disability since 2009 (used to b psychologist). If u r still thinking @ a book or have already done one, I would love to help! This condition is absolute worst hell & if I could help even one person (or myself), it would b more than worth it! R u still seeing Rozen? Has he helped u? He is @ 2 hrs from me but waiting list is forever long so going to see a new doc (Lisa Lore Garten n Cooperstown, NY) recommended by my rheumatologist 11/11/11. Am extremely curious to know if Rozen is worth the wait………..Thanks for sharing your stories & experiences & pls contact me if I can b of any help! I m always home! Best, Karen. PS: Sorry previous post had so many typos…..not sure what my phone is doing when I type 🙂

  15. Hey Amy,
    I I woke up with a migraine on April 23, 2007 and have yet to go a day without it (I was 16 then and now I am 21) I actually started a blog too about my journey too. Its really difficult being a teenager and having doctors constantly give up on you.

    http://maggie-haigh.blogspot.com/2012_01_01_archive.html

    I’m not trying to advertise myself but I have tried pretty much everything and my blog has a lot of my story. 🙂 I would love to talk to you about it if you need a younger persons story who deals with everyday chronic migraine. My email is located on my blog.

  16. Hi Amy. Thanks so much for starting this website. I have had NDPH and chronic migraine for 4 years and 3 months (but I’m not counting)! I have tried about 70 medications and every procedure out there. I have completely changed my diet and undergone quite a bit of behavior modification. I think a book about NDPH would be fabulous! If you’re still looking for stories, please contact me.

    All the Best,
    Julie

    • Hi Julie, I have had NDPH and migraine for 2 1/2 years. Just curious what diet and behaviour modifications you have made to improve your headache? I have been trying to follow a low amine free of artificial colour, flavour and preservative diet. I think it helps with the migraine but not so much with the NDPH.

      • Hi Wendy. I had a special blood test done to test for sensitivities to foods and additives. Turns out, I’m sensitive to loads of things. I had a lot of inflammation in my body (and extra weight). Eliminating all those foods has caused me to lose quite a bit of weight. Unfortunately, it hasn’t helped with my headaches.

        I am exploring ONS (Occipital Nerve Stimulator). I have learned that people with NDPH are being helped by it. From what I understand, people seem to get about a 50% decrease in their headache pain.

        I’ve found that swimming helps my head (usually). Keeping a regular sleep schedule and making sure the room is dark and quiet has helped manage the pain better.

        Nothing has really helped reduce the pain on a long term basis. 🙁 I sure hope someone finds something for us soon!!!

        • Hi Julie, I am actually in the middle of my trial ONS and having the final surgery on Monday. I have had some relief, but my menstrual related migraines are tough to beat. I did manage not to take any abortives or pain meds up until today, but I had to use a triptan this afternoon. I hope you find it helps your pain. Good luck.

  17. I would love to participate in helping you write a book if you’re still interested in doing so! I also had a peripheral nerve stimulator implanted which is heaven on earth if you want some perspective on that as well.

    • Hi Kyle,
      Yes, I would love to hear your story and all about the peripheral nerve stimulator. Can you email me? I just started working on the book project again this week and can use all the help I can get!

      • I couldn’t find your email, but here is mine. kylekastle@gmail.com feel free to email me! I’d love to help in anyway I can. I’ve thought about doing this so many times but i’m really not a writer, but i truly believe that this information needs to be out there for those who haven’t yet found a diagnosis.

  18. I got a sudden severe headache on December 6, 1994. I was laid up for over a month in and out of emergency rooms for pain. Have had a headache every day since. Loads of meds, procedures, neurologists. My life has never been the same. I would love to know more about peripheral nerve stimulation and would be happy to help any way I can. I was 35 when I got the headache.

  19. I got a sudden severe headache on December 6, 1994. In and out of emergency rooms for over a month. I have had a headache every day since. Many neurologists, meds, procedures etc. No help. I would love to know more about peripheral nerve stimulation. I was 35 when the original headache occurred. My life changed that day. I would help in any way I could

  20. I was wondering if you still need stories cause the book idea would be fantastic our stories need to be told more doctors needs to know about this disorder there is nowhere near enough info on this yet so somthing needs to be done support groups needs to be established so on an so fourth i just fear that someone else in my family will get this disorder an i dont want that. my email is sdsm5238@yahoo.com

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