Is New Daily Persistent Headache an “unhelpful myth”?
New Daily Persistent Headache (NDPH) is a headache diagnosis in the International Classification of Headache Disorders (I believe it was added in the second edition). But a new study is raising questions about the value of this diagnosis.
The key feature of NDPH is that the patient can remember when it actually started, and yet we’re basically not sure why it started. Obviously headache from head trauma would not be NDPH. However, there do seem to be some “triggers”, such as a recent infection.
You may remember some of the people who have told their story of living with NDPH (read more here). So the question is not “Is this real?” – yes, it is.
Let’s look at the study first. The study was published in the journal Cephalalgia, and focused especially on children and adolescents with NDPH. The conclusion of the study was that the vast majority of patients had migraine symptoms – in other words, we can call it whatever we like, but it looks like migraine. The authors of the study write:
Overall, youth with continuous chronic migraine and new daily persistent headache did not have clinically meaningful differences in headache features and associated disability. Findings suggest that chronic migraine and new daily persistent headache may be variants of the same underlying disease.
Clinic-based characterization of continuous headache in children and adolescents: Comparing youth with chronic migraine to those with new daily persistent headache
This is interesting because there are a lot of headaches that “may be variants of the same underlying disease”. For example, now that we know that tension-type headache is a lot closer to migraine and normally not actually caused by muscle tension (hence the updated name).
So why have this diagnosis in the first place? After all, we usually don’t use a separate diagnosis of any other disease just because we “clearly remember” when it started!
There’s a simple explanation. Researchers believed that there might be good reason why this headache is different. Might there be a different set of symptoms (this study suggests that the answer may be “no”)? Might there be a different kind of treatment that works? Might there be a biological difference that we don’t yet understand?
The authors of the International Classification of Headache Disorders 2 explained it this way:
The subcommittee aims to stimulate further clinical characterisation and pathophysiological research of this entity, especially studies comparing 4.8 New daily-persistent headache with 2.3 Chronic tension-type headache.
The International Classification of Headache Disorders 2nd Edition
The classifications are useful because they help us to communicate using the same language. But they’re not meant to be eternal truth. They change as we learn more, and find better ways to get directly to the best treatment for people who have the symptoms.
And this new study, and other past studies, are doing exactly what the ICH2 authors wanted. They’re studying NDPH.
Dr. Alexander Mauskop at the New York Headache Center believes that the diagnosis is simply an “unhelpful myth”. Why the strong language? Here’s what he says:
New daily persistent headache (NDPH) is one of the dozens of types of headaches listed in the classification of headaches. This particular listing causes more harm than good. NDPH is defined by the single fact that the headache begins on a certain day and persists without a break. The classification says that NDPH may have features suggestive of either migraine or tension-type headache.
New daily persistent headache (NDPH) is an unhelpful myth
There are no parallels to NDPH in medicine. There is no new daily persistent asthma, or new daily persistent colitis, or any other “new daily” disease.
There does not appear to be any justification for having NDPH as a distinct condition. It does not have a typical clinical presentation and it has not led to any research or treatment. When you search for this condition on the internet, you will not find any effective treatment for it. The suffering of many patients is magnified by the loss of hope, worsening depression, and flagging will to live.
Most importantly, some patients with NDPH do respond to treatment. According to anecdotal reports and in my experience, Botox injections, intravenous magnesium, preventive drugs for migraines, and other treatments can be effective.
Please note that Dr. Mauskop is not suggesting that NDPH “doesn’t exist” or is “all in the patient’s head”. What he’s saying is that separating this as a different diagnosis from migraine or tension-type headache is not getting any better treatment for the patient. Because the evidence that this is a “different disease” is not holding up well under new research.
The good news is that the New York Headache Center, and other doctors and specialists, have found that NDPH can be treated. Like migraine or tension-type headache, it depends on the patient. But just have a NDPH diagnosis should not lead you to give up on treatment.
What do you think? Is this a useful diagnosis? It would be especially helpful to hear from those who have been diagnosed with NDPH.
1 July 2021 @ 9:23 pm
My son seems to have something along the lines of a weird form of NDPH. I think some kind of distinction is useful, for now, because my son’s headache seems more like a foot cramp of the head than a migraine.
He got the headaches all of a sudden, without ever having had a headache before.
I’ve never heard of anyone in my family having a headache that couldn’t be cured by an aspirin. We have no chronic headaches of any kind, and my wife’s family has no headache problems.
My son’s headaches spike a lot more than migraines seem to but don’t seem to be as paralyzing as migraines.
My son actually tested positive for having had a virus that sounds as if it could cause a post-viral syndrome, and we’ve gone camping, live in an old house and have pets and could easily have had all sorts of bacterial, viral or fungal infections.
When I go online, I don’t see evidence of anyone having done any respectable research on this condition.
I don’t see evidence that anyone has done a bunch of CAT, MRI, fMRI or PET scans of people with NDPH and analyzed the scans in a systematic way. I saw what I think is a magna cisterna and lopsidedness on my son’s MRIs, but I can’t even really ask about that, because I immediately got shut down when the doctor realized I’d tried to look at the images, just because I’d looked at them. But I don’t see whether anyone has checked NDPH brains for asymmetry, magna cisternas or small arachnoid cysts. So, how can doctors call those incidentalomas when they haven’t even had an intern study scans for high school science fair projects?
And why in this age of Family Tree DNA can’t researchers send fecal, ear and nose swabs from 30 people with migraine, 30 NDPH people, and 30 controls through gene sequencing systems, to compare and contrast?
And why can’t someone create a packet of records for 50 people diagnosed with NDPH 20 years ago and see how their health trajectories compare with the trajectories for migraine people and controls? (Maybe the controls could be concussion patients.) Do the NDPH people look just like the migraine people and the controls, or are there differences? What’s up with life expectancy?
Instead of seeing studies like that, all I see are studies comparing what NDPH and migraine people are like now and maybe over the course of a short period. That doesn’t seem like extensive enough research to come to any conclusions about the relationship between migraine and NDPH.