Telling the Story of New Daily Persistent Headache

She was putting in her contacts, and all of a sudden got a headache.  He got a cold, and got a headache.  She woke up with a headache.

Some of this may sound familiar.  But when it comes to new daily persistent headache (NDPH), the headache starts but never stops.

All in My Head by Paula Kamen

NDPH is diagnosed when the headache is constant for at least 3 months.

There are a number of different chronic headaches.  Many people have headache all the time, but don’t have NDPH.  How is it different from or the same as other headache types?

  • NDPH starts suddenly, or over the course of a few days, but the start of it is remembered.  Usually these patients don’t have a history of headache.  But on a certain day, the headache starts, and it never stops.  (If the patient can’t remember when the headache started, but the symptoms are similar to NDPH, it’s usually called chronic tension-type headache)
  • It’s usually a mild to moderate pressing or tight headache, not often pulsating.
  • The patient may have one of the following: sensitivity to light, sensitivity to sound, mild nausea.  (If the nausea is severe or there’s vomiting, it’s diagnosed as a different type of chronic headache.)
  • The headache is usually (not always) on both sides of the head.
  • The headache is not made worse with physical activity.
  • NDPH strikes all ages, and both men and women, though it seems to strike more women than men.

Remember, there are many types of chronic headache.  These are symptoms typical to NDPH.

Sometimes NDPH can go away, though it generally takes several months of treatment.

But very often NDPH is very resistant to treatment.  Years go by, and patients do not find relief.

How do specialists try to treat NDPH?  Very often treatments are similar to treatments for migraine.  And sometimes those treatments work.  But there is no typical treatment, and remember we’re searching for better treatments, because many patients have not yet found anything that works well.

Patients tell their stories…

Chocolate and Vicodin by Jennette Fulda

Increasingly, patients with NDPH are telling and sharing their stories.  If you want to read about the experiences of people with NDPH, here are some places to start:

All in My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache by Paula Kamen.  (amazon UK)The crazy adventures of over 10 years with NDPH.  Also in Kindle format.

When a headache never goes away by Deborah Kotz of the Boston Globe.  This article from earlier this year explores the stories of patients and doctors trying to treat NDPH.

Chocolate & Vicodin: My Quest for Relief from the Headache that Wouldn’t Go Away by Jennette Fulda.  (amazon UK) (also available on the Kindle)  An honest and funny memoir about living with NDPH.

Living with NDPH, a blog from Amy, a mother and NDPH sufferer.  Amy is also working on a book – hope we’ll see it soon!

If you’d like to learn more, you can listen to about an hour of questions and answers with Dr. George Nissan thanks to the National Headache Foundation.  Listen here:

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9 comments… add one
  • Nebby Nov 14, 2012

    This just exactly describes what my son had until recently. His inital headache began while travelling; I couldn’t say the exact day. It was constant for 6-8 weeks, then went away on its own. But a couple of months later came back on 10/19/2010 (see I can tell the date this time because it was so sudden). Then he had it constantly for almost 2 years. It was always in the same place, across the front of his forehead. he saw 2 neurologists, tried different migraine meds. He only began to have some relief when we tried acupuncture and now has been headache-free for 3 months through a combination of acupuncture, homeopathy and prayer. I know our solution may not work for everyone but I just wanted to share his story and what did work for him.

  • Bobbi Nov 26, 2012

    I’ve had my headache for almost 10 years but my memory is so bad now I couldn’t tell you when this all started. The headache has affected my memory and all aspects of my life, couldn’t tell you if it’s NDPH or otherwise at this point. Seems pretty pointless all in all…

  • Jennifer Nov 29, 2015

    September 10, 2005 I had had a bad cold for 4 days, but I thought I was starting to feel better. I am a teacher and I had essays to grade. The back of my head started to hurt, but I kept grading. The pain seemed like it grew inside my head until I couldn’t concentrate at all and got really dizzy. I had trouble calling for help, but eventually I got my neighbor on the phone and she took me to the hospital. my bp was really high. They did a lumbar puncture and sent me home with pain meds. I remember almost everything about that night. It was the start of my next 10 years of headache and dizziness hell.

  • john Jan 18, 2017

    My son had NDPH for 9 straight months. In January 2017 he was treated at Jefferson Hospital in Philadelphia as an in-patient for 7 days after which he was headache free. They treated him with a combination of meds – Lidocaine, DHE, Magnesium, Haldol and toradol.

    • Kathy May 2, 2017

      Is your son still headache free? My daughter had NDPH for 9 month a couple of years ago. It faded on its own. Now she has it again for the last 6 weeks. Curious if this combo of drugs is still working. Told there is a back order of DHE.

      • Jim Jul 24, 2017

        My 14 yo son has had NDPH for 9 months now following a Mono infection. Is your daughter headache free again? Its seems really hard to abort this headache and not much is research done to help find a way break the cycle. We’ve tried everything kind of med. Nothing helps. His doc (Boston Children’s) is advising against the inpatient IV meds only as a last resort.

  • David Oct 2, 2017

    I am not sure my headache is chronic migraine or NDPH. Some doctors said it was NDPH some said it wasn’t. I am very depressed right now because I’ve tried literally everything including Infisions but nothing has helped. Any type of advice would surely help. I feel I have no choice but to go to a pain doctor and get on narcotics to numb the pain. I know that’s not an answer but I really have no choice.

  • Diana Jan 27, 2018

    Diagnosed with NDPH about 1 year ago. I’ve had a daily headache, morning, noon, and night, since June 2016. Ive had MRI, MRV, and the spinal tap thing. Nothing!! Im on my 3rd headache specialist, one of the best now, UC in Cincinnati. Hes great! My second neurologist suggested physical therapy. At first I was very skeptic, but after a year and a half of treatment, it is my “go to” answer for pain control. They have taught me how to lay down, get up, sleep, sit, stand, what to eat, what not to eat., and drink. and numerous other suggestions on bringing down the pain level. Im off of caffeine, for a year now, and beer. No alcohol in my life anymore. Slowly weening myself off of chocolate. Im on a daily regimen of Magneisum, Riboflavin, and Co-Q10. 300 MG of each, once daily. Pain level over the past year and half has dropped from scale of 7-8 to .5-2 on a daily basis. With some days being worse than others, depending on the day Im having. They also tried me on numerous antidressants, which I hated and got off of after a few months. They started me on 100 mg of Topomax. Which after 2 months, not much relief, in which I developed a never ending eye twitch. Reduced the mg, no avail. Im off of that now. Eye is back to normal. So, no prescription drugs, only nature vitamins, and PT. An occasional 600mg of Advil. But the pain is very persistant. I suffer everyday, on some pain level, but life goes on for me. Im 55 years old, a mother, grandmother, wife, and I hold down a part time job everyday. I cant give up !! Its just a headache, right? otherwise, Im healthy. I am a former runner of 13 years, 5Ks, 10Ks, and half marathons. Ive settled for just walking now, but it works for me. So, my suggestion to anyone who also suffers from this condition, mention physical therapy to your doctor. For me it is a life saver.. Also, an app called “Miagraine Buddy” works also. Keeps a personal daily diary of your habits, and treatments that help you the most.

    Good luck to all, and my we all be headache free someday soon!!

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