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NDPH

Telling the Story of New Daily Persistent Headache

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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:

Doxycycline for daily headache?

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So how would you feel about taking an antibiotic for your headache?  If you’d be uncomfortable with that, you’re not alone, and I’m proud of you.  🙂

But that’s no reason to ignore the small study that was done by Dr. Todd D. Rozen of the Michigan Headache and Neurological Institute.  In the study he used Doxycycline to treat new daily persistent headache.  Before we get to the results, a quick overview of Doxycycline itself.

Doxycycline is the generic ingredient in a whole host of brand name antibiotics, such as Adoxa, Doryx, Monodox, Periostat, and Vibramycin.  These types of antibiotics work by interrupting the life cycle of the bacteria.  It’s used for a number of different bacterial infections.

New daily persistent headache (NDPH) is one of the most treatment-resistant types of headache.  In fact, the patients in this trial had already tried (unsuccessfully) 5 different preventive treatments.  Interestingly, many patients get NDPH after an infection.  And one theory is that a certain type of inflammation is behind NDPH.

That inflammation chain-reaction can also be stopped by Doxycycline, making it a candidate for treatment.

Only 4 patients were in the trial, but 2 became 100% pain free, 1 had an 80% improvement in daily pain intensity, and the last person had a slight improvement in pain intensity and a more than 50% decrease in severe pain episodes.  On average, patients improved after 3 months (2 daily dosages of Doxycycline, 100mg).  There was only one notable side effect – one patient got a severe sunburn (you have to be careful about your time in the sun when you’re on Doxycycline).  These are very good results for something so difficult to treat!

So the results are pretty positive, and it probably wasn’t because of the antibiotic properties of Doxycycline at all.  If these findings are confirmed by larger studies, it may show that our understanding of NDPH is on target.  And it may open the door to better treatments.

Doxycycline itself may or may not be a good treatment.  Obviously, we need to be cautious about taking antibiotics.  Also, many medications, supplements and foods can decrease its effectiveness, so it needs to be taken properly under the care of a doctor.

This study was brought to my attention by the Headache News Blog.

New Daily Persistent Headache

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I don’t know about you, but I can read medical studies and statistics for hours and never really "get it" until I hear some personal stories.  That’s why I appreciated the news article I just read – not for it’s medical data, but for the stories it told.

The story of Jai Kawale is a common one when it comes to New Daily Persistent Headache (NDPH) (which I wrote about in June’s HeadWay).  Often (about 30% of the time) it all starts with an infection, like the flu.  But the headache never goes away.

Very difficult to treat, the NDPH is a medical mountain that doctors and researchers are trying to climb.  Check out some real life stories in the article – The 18-month headache

Also, for more check out the blog called Her Life In A Nutshell…, from Joanna who suffers from NDPH.

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