New Daily Persistent Headache is very treatable
New daily persistent headache (NDPH) is condition that is defined solely by the fact that the headache begins suddenly one day and does not go away. There are no scientific studies to suggest possible underlying mechanisms or treatments. Some patients develop it after a viral infection while others, after a period of stress and many with no apparent trigger.
In my latest book, I mentioned how a seemingly benign idea of classifying medical conditions can cause harm. In case of NDPH, many anecdotal reports in medical journals indicate that this condition is not responsive to treatment. However, there are no controlled double-blind studies, only anecdotal reports. Many patients with this condition will look up this literature and conclude that there is no hope of getting better. I have seen many such devastated people. But this bleak picture is clearly wrong.
I have seen many patients with NDPH who responded to various treatments. In my 30 years of using Botox, I have found it to be one of the safest and most effective treatments for NDPH as well as migraine and other types of headaches.
At the recent meeting of the International Headache Society held in Seoul, two presentations described good responses of NDPH to Botox injections.
The first report was by S. Cheema and colleagues of Queen Square Institute of Neurology and The National Hospital for Neurology and Neurosurgery, London, UK. They compared patients with NDPH (58) and those with chronic migraine (CM) with daily attacks (153) and chronic migraines without daily attacks (85). There was a 30% reduction in mean moderate and severe headache days in 33% of patients with NDPH, 43% with daily CM and 55% with non-daily CM.
The second report was by Shuu-Jiun Wang and colleagues of the Neurological Institute, Taipei Veterans General Hospital. They looked at the response of patients with NDPH who had predominately migraine features and those who had predominantly features of tension-type headaches. Of 228 patients diagnosed with NDPH, 199 patients (87%) had migrainous features and 29 patients (13%) had tension-type features. Their conclusion: “Through a mean follow-up duration of 2.5 years, around 40% patients with NDPH showed a favorable outcome at our headache center. Our results suggest NDPH might not be as grave as previously reported.”
Yes, these were also anecdotal reports rather than controlled trials, but they clearly show what I have also observed in my practice – NDPH is a very treatable condition. Hopefully, the next, fourth edition of the International Classification of Headache Disorders will no longer list NDPH as a diagnosis since it has no scientific basis.
We have tried 25 plus medications, treatments etc after 4 years with two top neurologists and keep on researching for successful treatments. The reality is whilst treatments work for some for others they don’t and the neurologists advice in the end after going through all recommended meds, treatments etc is to learn to live with it! Perhaps clear ongoing, upto date objective research and what treatments work etc and for the profile of patient etc may assist. Thanks
Thank you for your comment. You are right that in some patients, NDPH is difficult to treat. The problem with surveys and the information on social media sites is that patients who get better don’t bother going online or complete surveys. So there is a major selection bias.
I have NDPH going on 6 years. Regardless if
It’s an actual headache classification not. Nothing, including Botox has touched this and I’ve tried multiple drugs within all the different drug classifications of meds and devices that are used for migraine patients. The only statement in your article I agree with is about lack of any research into NDPH and potential drugs.
We’ll see if the survey backs up your claims or not.
I do think it’s disingenious to tell patients that this is very treatable when all the anecdotal evidence points in being extremely refractory to treatments.
I’m the founder of NDPHaware.org, we have a survey out , NDPH Patient Experience Survey. redcap.link/ndph
Please send to your NDPH patients to have their experiences heard.