The challenge of taking care of patients with NDPH

I have recently reviewed the basics of New Daily Persistent Headache (NDPH) so providers in the community can have a better understanding of this primary headache.  It is often misdiagnosed, mainly due to unfamiliarity.  And now that you have a better understanding, you will be able to recognize it more readily.  One of the most frustrating things for the families is the lack of a firm diagnosis.  Many medications are tried and failed, some appropriate and some inappropriate.  They often express relief after a headache program evaluation, when the providers can explain what is really going on with their child.  The diagnosis is not good news, but uncertainty is often worse.

So what exactly can you do to help a patient with NDPH? Since I know that few medications are useful, I do not routinely recommend one.  I take my cues from the parents and patient, and sometimes they have different opinions.  Oftentimes, the parents are eager to try another med, anything to get this better.  But the teens I deal with really are not interested in doing another medication that ‘will not help me and just make me feel bad’. I generally agree with them.  They are usually interested in participating in research, anything to better understand the NDPH.

In the past 1-2 years, I have been recommending that they try the short-duration lidocaine infusion. The way I look at it, it’s a short intervention that is either going to help or not. But it will not make them worse, which makes it a big plus. And if it is helpful in reducing their symptoms other than headache, that has the potential for improving function and avoiding disability.

Apart from these kinds of initiatives, I just focus on the basics.  That means healthy headache hygiene, which includes adequate hydration, good anti-inflammatory diet, moderate but frequent exercise, and a good night’s sleep.  I reviewed these areas in previous posts (All about the migraine parts 2 & 3). This is even more important for the NDPH patient and most of them are challenged in one or more areas.  They are frequently my patients who don’t drink enough, eat a beige diet, and are persistently nauseous, don’t exercise at all, and have a hard time with sleep. It can be overwhelming to have to tackle many lifestyle issues, so we focus on one at a time, baby steps to improvement.

I like to see them in follow up every 3-4 months to keep them on track. Frequent reminders about any positive progress are also helpful.  When they are discouraged, I refer back to my notes from previous visits, citing an improvement in pain scores or general functioning that I documented 1 year before.  When you are in the weeds with this kind of chronic pain problem, you tend to not notice when things get better incrementally. It can give them encouragement to continue on the path to wellness.

A huge aspect of dealing with teens with NDPH is learning how to cope and manage their chronic pain and stress. I start with recommending counseling with CBT to help them learn pain coping skills. They can be resistant but I can be persistent.   (See previous post: stress and migraine).  There is usually an anxiety overlay in these patients- whether it was there before the headache or developed as a result of having chronic headache.  We can consider starting an SSRI as a way to manage anxiety and also to help with the headache.  I will explain the nervous system pathways for pain and anxiety are right next to each other, and that treating anxiety could very well help the headache.  This is almost always a helpful approach.  It doesn’t ‘cure’ the headache, but promote better coping ability which leads to better functioning, which can lead to NDPH improvement.

I have also tried occipital nerve and trigger point injections in those patients whose headache seems more focal or located in the occipital area. This has the possibility of improving the headache.  I ask that they come for 2 procedures before deciding it does not help. I would say it helps reduce the pain level in about 50% of my patients with NDPH (my guestimate). This is another intervention that could help, and generally does not make the headache worse in the long run.

Understanding and treating NDPH is a work in progress. Redirecting from ineffective and often invasive measures, following patients closely with an open mind and constant support, and emphasizing non-pharmacologic approaches  remain the standard of care until, hopefully, new research brings new insight.

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