Welcome to NDPHaware.org
NDPHaware is a new organization sharing information and organizing advocates around New Daily Persistent Headache (NDPH). This organization (NDPHaware.org) is starting as a project under Clusterbusters.
NDPH is a rare and debilitating headache disease, with many unanswered questions about prevalence, causes and effective treatments. People with NDPH have a headache 24/7, year-round with pain levels that vary, but are always present to some degree. Many symptoms of NDPH are similar to those of migraine disease. Most people with NDPH can pinpoint the specific date when their persistent headache began. The prevalence of NDPH is estimated to be 0.03% to 0.1% in the general population and is higher in children and adolescents than in adults.(1) This means there may be more than 300,000 Americans living with NDPH.
The primary objective of NDPHaware is to find and promote treatments that will help people to effectively manage their condition. There is some anecdotal evidence that psychedelics (Psilocybin and LSD) can help with NDPH. NDPHaware supports further research into psychedelics as potential treatments for NDPH and other pain conditions.
NDPH often begins after a person experiences some type of infection. There is a growing wave of people with NDPH as a long-lasting result of infection by Covid-19. NDPHaware will work with Covid-focused organizations and other infectious disease organizations to better understand the connection between infections and NDPH, and to find effective treatments and enhanced social support for people experiencing this disabling disease.
The NDPH community will work collaboratively with the broader headache disease community to support research, education and advocacy initiatives. By working and advocating together, we will be stronger and more effective in reaching our shared goals.
If you are interested in collaborating with NDPHaware, please contact Alan Kaplan.
1. Yamani, N., Olesen, J. New daily persistent headache: a systematic review on an enigmatic disorder. J Headache Pain 20, 80 (2019). https://doi.org/10.1186/s10194-019-1022-z
What is New Daily Persistent Headache (NDPH)?
New daily persistent headache is a type of headache that starts one day and is constant from the onset. It can occur anywhere on the head and have tension, migraine, or other headache features. The age of onset ranges from 6 to 70 years old, and it is more common in women than in men. Most people with NDPH do not have a history of headache. One unique thing about NDPH is that most people with it can remember the month or day when it started. NDPH has two subtypes: 1) a a self-limiting subtype that typically resolves within several months without therapy, and 2) a refractory subtype that is resistant to aggressive treatment regimens. NDPH is rare– one study estimated that it occurred in only about 0.03% of people aged 30-44 per year .
What causes NDPH?
The cause of NDPH is currently unknown. However, about 14-30% of cases occur after a viral infection, such as a sinus infection or Epstein-Barr. Another 10-12% of cases occur after a stressful life event, and 7-12% occur after a medical procedure involving the head or neck, which is potentially attributed to positioning of the head/neck under anesthesia . A significant proportion of people with NDPH also have cervical hypermobility which may contribute to symptoms. Research on NDPH has suggested the following causes:
- Viral infection (sinus infection, Epstein-Barr)
- Persistent inflammation/increased TNFα (many potential causes)
- Cervical hypermobility
- Stressful life event
- Dental or other medical procedure involving the head/neck
How is NDPH diagnosed?
NDPH is a diagnosis of exclusion, meaning that all other medical causes must be ruled out for the diagnosis to be made. According to the International Classification of Headache Disorders, NDPH “must not be accounted for by another ICHD-3 diagnosis,” including chronic migraine, chronic tension headache, or hemicrania continua . The criteria for an NDPH diagnosis are:
Persistent headache, daily from its onset, which is clearly remembered. The pain lacks characteristic features, and may be migraine-like or tension-type-like, or have elements of both.
- Persistent headache fulfilling criteria B and C
- Distinct and clearly-remembered onset, with pain becoming continuous and unremitting within 24 hours
- Present for >3 months
- Not better accounted for by another ICHD-3 diagnosis
To diagnose NDPH, your doctor may request tests such as:
- CT of head/neck or sinuses
- Lumbar puncture
- Blood tests (CBC, metabolic panel, thyroid tests)
Isn't NDPH kind of a catch-all diagnosis?
Yes. NDPH is more accurately described as a syndrome, rather than a diagnosis. It is classified as a primary headache, which means it is not caused by another underlying disease such as a tumor, infection, or head injury. Currently, most doctors treat NDPH based on symptoms– if it is more like a migraine, they will use chronic migraine medications like CGRP blockers or triptans, while if it is more like a tension headache, they will use muscle relaxers like tizanidine or baclofen. Headaches that have other features, such as burning, can be treated using nerve pain drugs such as gabapentin.
Is NDPH curable? What is the prognosis?
Yes and no. People who are able to find an underlying cause of their NDPH or the right combination of medications can often eliminate the pain or bring it to a very low level. However, most people with NDPH have persistent headache that can last for months or years despite aggressive treatment. According to one study, about 15% of NDPH patients remitted within the first 2 years after onset, and 8% had a relapsing-remitting type of headache, where the pain would stop and then come back . It is not infrequent for NDPH to be an intractable headache disorder that is unresponsive to standard headache therapies.
 Rozen, T. D. (2011). New daily persistent headache: clinical perspective. Headache: The Journal of Head and Face Pain, 51(4), 641-649.
 International Classification of Headache Disorders-3, https://ichd-3.org/other-primary-headache-disorders/4-10-new-daily-persistent-headache-ndph/
 Vanast WJ. New daily persistent headaches: Definition of a benign syndrome. Headache. 1986;26:317