TRANSCRIPT:

Voice-over: Welcome to Spotlight on Migraine hosted by the Association of Migraine Disorders. Join us for fresh perspectives by medical experts and advocates as we explore the spectrum of migraine and dig deeper into this complex disease. This episode is brought to you, in part, by our generous sponsor, Amgen.

In this episode, Dr. Matthew Robbins talks about new daily persistent headache, including the diagnostic criteria, potential causes, treatments, and more. Then we hear from patient advocate, Alan Kaplan, about his experience living with the condition.

Matthew Robbins, MD: Hello, I’m Dr. Matthew Robbins. I’m a neurologist and headache specialist at Weill Cornell Medical College, in New York City, where I’m also the neurology residency program director for New York Presbyterian Hospital. And I’m really delighted to be able to speak with you today about new daily persistent headache. Thanks to the Association of Migraine Disorders and CHAMP for this great invitation.

I want to start with an example. Here’s a 48-year-old woman, who I saw in my practice, who presented with an unremitting daily headache starting spontaneously back in November 1986. She clearly remembered the day it started. She didn’t have any background of migraine or tension-type headache, and this just happened out of the blue with no escalation of any headaches leading into that very significant day where it became continuous. And it’s been continuous ever since, which has been dreadful.

She’s had numerous treatments in the past that did not work. Many different acute treatments, many different preventative treatments, and nothing really gave her enduring sense of relief. Her examination was totally normal, as were all the tests that she had – blood tests, MRI scans, even spinal tap and other tests that never showed an answer or why she was experiencing what she had here.

So this patient has new daily persistent headache, which was a condition originally described by a neurologist, Dr. Walter Vanast – who practiced, at the time, in Edmonton – where he saw a great number of patients like this. And he described the syndrome, which had the core principles of being daily from the very beginning, there was no preceding headache history at all – no one had a history of migraine or tension-type headache at all – and there was no other cause found based on investigations or in taking a history or examining the patient.

And the criteria that we now use is very similar to what Dr. Vanast initially described. To diagnose new daily persistent headache, the International Headache Society requires that there has to be a persistent headache for at least 3 months, and the patient has to really remember the onset, so it has to really be abrupt in onset and becoming unremitting and constant within 24 hours of that onset. And there can’t be another diagnosis that better explains the condition.

So, there’s a good history for new daily persistent headache. When Dr. Vanast described this for the first time, this actually made the news because there was one condition that looked like it was a trigger, which was Epstein-Barr virus infection. And nowadays, in the pandemic that we are emerging out of, which is COVID, we are seeing people who have a continuous daily headache that emerges after having COVID infection. So this made the national enquirer then, and now, of course, we’re inundated with COVID and neurological sequela and long COVID nowadays.

When I was a fellow, we described new daily persistent headache in a very detailed way to show that many people could have headache that was constant that resembled horrible chronic migraine or horrible chronic tension-type headache, but the prognosis and the otherwise responses to different treatments didn’t really matter all that much.

So what is the cause of this new daily persistent headache? In an editorial for our project back then, Dr. Young and Dr. Swanson labeled this as the switched-on headache because it’s like that [clicked fingers] – a patient just has a headache that starts abruptly, and there’s no cause, and the day before they didn’t have one. It seems very distinct. So the possibilities could include this is just migraine or a tension-type headache biology that just gets switched on rather suddenly for some reason.

It could be that there was an infection – like Epstein-Barr virus – that was detected or not detected or COVID that leads to this inflammatory headache that develops in the aftermath. It could be that many people with new daily persistent headache actually don’t have that at all because there’s some symptomatic cause that is missed by all the doctors they’ve seen. The most common one that we probably identify as such is something called intracranial hypotension where the pressure or volume of the spinal fluid inside the head is too low because of spinal fluid leak, called a CSF leak, on that is in the spine, and those can sometimes be very hard to diagnose.

Another is that we just don’t know what is the cause of this headache, and we just haven’t discovered it yet based on our best knowledge of science and clinical medicine. It could be that this is a postinfectious disorder because other viruses have been known to trigger this that have been studied in different series. I’m going to show you some information about how there’s a seasonal variation to many of the patients who have new daily persistent headache.

And then there’s been a number of different investigations that have shown different types of association such as higher rates of low-functioning thyroid in people with new daily persistent headache in comparison to other headache problems. People have more hypermobility, their cervical spine just seems to be more flexible or too flexible, and this could be maybe a trigger for a daily headache. There’s been other associations that I’ve looked at that I’m listing here as well.

Now when we think about new daily persistent headache, patients and doctors always are looking at well what were the circumstances around the onset, what happened at the time, because will that really inform you about the cause really is? And there’s a long list of things that have been associated with new daily persistent headache. And the fact that the list is rather long really suggests that probably there isn’t just one cause. New daily persistent headache is a syndrome that many different factors can incite it in some way. And, perhaps, it is just migraine biology that is just turned on in some way because of some external factor that takes place.

So I mentioned about the infection or a flu-like illness that could happen at the beginning, but certainly things like stressful life events could be a lead-in to this or having surgery where there’s a breathing tube places, in this course of the anesthesia of the operation the head or neck is positioned in a certain way. Many different things you can see listed here, which could have relevance today such as vaccination. I’m sure and I already have seen many patients who have vaccination emerging new daily persistent headache from the COVID vaccine of different sorts. And also other medication associations where you remove the medication that could have caused headache as a side effect, but then the headache never goes away. So those are all things that we’ve observed over the years.

Now the seasonal variation you can see on the left side of the screen you can see that new daily persistent headache in our study from 11 years ago showed this seasonal change where in the spring and in the fall, you saw spikes, which could imply there’s some activity that’s related to a viral problem, or it could just be that those are intense times in people’s lives such as the start of school or work becoming more intense at the end of the summer. A follow-up study showed a similar spring and fall peak for those. And then, when you do look at new daily persistent headache and migraine, they both show similar times of onset actually with the seasonal pushes.

And if you look down here, emergency room visits for teenagers also seemed to spike in the fall. And the more recent study that was just published from the University of Cincinnati did show also this fall spike for teenagers with both chronic migraine and new daily persistent headache. So we don’t know if that seasonal variation is really specific to new daily persistent headache, but it’s an interesting association we’re following.

Now to help distinguish between new daily persistent headache and say chronic migraine, if you look here, on this X axis here you see the months after the headache begins. So if migraine starts, you know, people can have episodic attacks, sometimes they can become frequent, and usually it only becomes chronic migraine in the setting of a number of risk factors such as things that are discussed like medication overuse – someone has a head injury, there’s a major stressful life event. There’s also coexisting pain problems or behavioral issues like depression or anxiety that sort of accelerate the pain progression from migraine developed into chronic migraine.

With new daily persistent headache, we don’t have that data because it’s like going from 0 to 30 immediately. Just like a car accelerates from 0 to 60, that’s what happens in new daily persistent headache with this abrupt onset. And we don’t know if any of these factors are relevant to the onset of new daily persistent headache, although many of them are on that list that I showed you that are associated with onset.

Now how about what are patients who have this condition. Well it’s actually more common than we think. You could see that it could be up to 1 in 1,000 people have new daily persistent headache in the population. In offices, like mine, and headache centers, headache specialists we see it very often – up to 10% of people we see in our practices have new daily persistent headache. And in those who practice pediatric neurology or pediatric headache medicine, it can be even 1 in 3 people have it.

It seems to be that more women than men get it, and it tends to start in middle age. And it’s been described in many different areas of the world. And we see that so many people with new daily persistent headache do have depression or anxiety. It’s hard to know if those are preceding factors that put people at risk for it, or because the headache onset is so abrupt and it’s so terrible that these coexisting psychiatric conditions are more because coping with new daily persistent headache is so challenging.

Now treating it that’s the big difficulty. We basically don’t have any specific treatment for new daily persistent headache, and the treatments are all borrowed from the headache condition from which it resembles. So we use medicines such as preventative treatments or acute treatments or even intravenous treatments that really work for migraine or tension-type headache, and we borrow those treatments to treat new daily persistent headache according to the headache type that it resembles.

There’s principles that could be very important like avoiding medication overuse, emphasizing nonmedicine treatments such as behavioral therapies, especially because coping with new daily persistent headache, since it’s so abrupt, can be so difficult. As many of you may know, there’s been anecdotal report of using the antibiotic, doxycycline, and the asthma medicine, montelukast, but this has never been subjected to a randomized controlled trial, and this all comes from a very short series that was presented at a meeting but not published. So it’s not something that I recommend.

But just given the fact that we have lots of good treatments that work for chronic migraine, those treatments can be used for new daily persistent headache. And you can see here a study from the Cleveland Clinic, on the left, showing that botulinum toxin may work well for new daily persistent headache. And we can also see a very comprehensive panel of pediatric headache specialists recommend that it’s reasonable to use CGRP monoclonal antibodies to treat new daily persistent headache, especially if it resembles chronic migraine.

What’s the prognosis of new daily persistent headache? Well, Dr. Vanast’s initial description showed that it was actually pretty good. That at 6 months, over two-thirds of people had resolution. And at one year, 4 in 5 people had resolution. Subsequent studies have shown resolution has not been that high also because probably subsequent studies have been from headache centers that tend to see more severe patients. And in the general practice, likely new daily persistent headache does get better with a higher rate.

In our study, we found that there were 3 patterns. One, people who just had new daily persistent headache that never really went away and was always continuous. Others were remitted, it went away. And the others who had this relapsing-remitting phenotype where headaches would last for months at a time and go away and have nothing and then have months at a time again. And that resembles this condition that’s known as episodic status migrainosus that Jonathan Smith and others, at Mayo Clinic, had described where people have known migraine can have these relapses of severe migraine, for weeks or months at a time, it goes away and then have it again.

Likely it could be the same condition that we’re describing.

I want to really thank you all, and here’s my contact information if you’d like to reach me. Thanks so much to AMD and CHAMP.

Alan Kaplan: My name is Alan Kaplan and I have New Daily Persistent Headache. I’m going to share with you my story of over the past three years and eight months. This all started early December 2017, when I woke up with a headache that just wouldn’t go away. I was taking all the over the counter meds, which didn’t help. I was having symptoms of, of course, head pain (mostly left side), tingling and numbness in my neck, my shoulder, down my arms. I was having pretty bad photo sensitivity and sound sensitivity. I didn’t know if it was the flu, allergies, sinuses, micro cervical spine issues. I was having nausea, forgetfulness, lack of concentration. I didn’t know what living chronic pain was going to do to me. I didn’t know that I’d have to wear special glasses to avoid the light indoors. I didn’t know that my ears would be pounding me so much. I didn’t know that the pain would have a mind of its own and travel around my head wherever it felt like. I didn’t know how radically my life was going to change. I didn’t know what I didn’t know.

I started visiting my doctors – allergists, ENT, primary, chiropractor. I explained to them my story each and every time. They started prescribing me the histamines, antibiotics, prednisone, gabapentin, Topamax, of course, over-the-counter meds, kept trying them to no avail. It wasn’t until I had an incident at my chiropractor’s office, where I was getting numbing down the left side of my face, down my arms and my body I kind of joked around with him that I was having a stroke, which he did not laugh and didn’t think that was too funny. He said you probably should get to the ER and have them check you out which, of course, I did as soon as I could.

And they took me in, gave me a CAT scan immediately, which showed there was no stroke, thank God. But they kept me and just wanted to figure out what was going on and what caused the tingling and what’s going on with these headaches I kept describing. Doctors, nurses, PAs kept coming to my room. Every one of them asked me the same question – what’s going on? And like a broken record, I just spit it right back out to every one of them basically the same story. They ordered multiple types of MRIs, blood tests, EEG, cardiac tests, and everything came back as negative or their favorite word as being unremarkable.

Meanwhile the pain levels kept increasing. I was stuck on the couch. Finally decided that I needed to find a headache specialist. And I started working with her probably around June, July of 2018 and started trying all kinds of meds – triptans, antidepressants, anti-seizures, CGRPs, Botox, nerve blocks – and this went on and on for probably about 8 to 10 months with zero help. Finally, she said to me that she basically has done all that she could do out of her office, and it was time to go to a clinic where they’ll have more options available to you, as they’re attached to a hospital.

So that kind of brought me to my first hospital visit and my first inpatient infusions, which I finally got a little bit of relief from, which were short lived – short lived meaning 2 or 3 months – but heck it was better than anything. You know, I tried ketamine, all kinds of devices, green light therapy, whatever – you name it I probably tried it. Many medications that they gave me were all medications they used for migraine. There are no medications specifically for new daily persistent headache. We need more research. We need clinical trials to find out what makes us so different.

To some relief after that inpatient experience, I decided that I would participate in a Miles for Migraine event, which is a support organization for people, like us. I went with my daughter. It was interesting to be around a lot of people that had the same or similar experiences I had. Being there and seeing there are other people out there like me was actually very helpful. It was also very helpful to have my daughter with me, as a support system. I don’t think I would have gone to this event without her.

But the pain levels just were not giving me a break and still no relief in sight. I decided that you know what, my wife and I were talking let’s get out of here, let’s go on vacation regardless of my condition and just get a break from all of this. So we went to London and Paris for a week combined and took with me my ketamine nose spray and my nausea medication, which were kind of like the only 2 things I kind of had in my toolbox at the time that was useful.

The trip was great. We had a really good time. I was limited in what I could do, but I did as much as possible. And, of course, now I have got to get back and find out what I missed. After we came back from vacation – this is in beginning of February 2020 – a month later, we all end up in a pandemic and kind of put everybody on the couch, which I’d been doing for a year already before that. So, I always joke that I was social distancing before it was a thing.

But all through this process, I always said to myself I’m all in, I’m all of the above. I’ll try whatever it is, I’ll research whatever has to be researched and find out any of the alternatives out there that I haven’t heard of previously or my doctors weren’t aware of or hadn’t talked to me about. At that point, I started reading about psychedelics and their benefits with headache. And I started working with a woman who’s a life coach, a psychedelic integration coach, and yes that is a real thing. Through working with my coach, I did a lot of internal work on forgiveness and gratitude and letting go of the past. Also started looking towards the future, creating a vision for myself and my family of a life that we’d love.

Staying with our mantra of all in and all of the above, the meds I was on wasn’t working. I stopped taking all of them. I had tried them and didn’t see the point of staying on something that wasn’t working and having to deal with the side effects. I was open to other options that weren’t medical. I had my first psychedelic experience about 10, 12 weeks after working with my coach. She was with me the whole time. She was what’s called my trip sitter, a person who stays with you. We did a lot of preparation work going into the trip, which involved a lot of intention, intention setting, making sure the setting of where the trip was going to take place was comfortable, safe. And also setting up a plan to integrate, after the journey, for all the information that the medicine gives you while you’re in that psychedelic state.

If you’re not familiar with psychedelics, psychedelics put you into an altered state of consciousness. They change the way you perceive things in the world. The music sounds different, colors look different, objects morph in and out, you’re hallucinating, things speak to you differently. Your mind opens up to new and different possibilities. And when you’re prepared, you’re open to receiving all this information and knowing that if things are a little difficult, you’ll get through it to the end, and there’s no harm that’s going to come to you. Just accept what’s coming at you.

The experience was amazing, it was very emotional. I woke up the next day with 50% of my pain gone, and it was kind of amazing. I was grateful and continued with what’s called microdosing, which is taking small imperceptible amounts of the medicine that kind of helps. The theory is to kind of help the medicine continue working its way. I noticed some changes – the pain levels were starting to be a little bit different, pressure seemed to be a little bit different. I was just noticing more things going on in my head that I hadn’t over the past 10 weeks, like I said.

So it was time, I thought, to take another trip. This time I did it with a friend of mine. I followed all my coach’s teachings, which is intention-setting, integration, and was really prepared again for another journey. This time it wasn’t as emotional as the first, but it was amazing just the same. It, once again, gave me a positive impact. My pain I noticed a reduction of my triggers this time, especially with light and sound, and that was an added benefit for the second time. I was turning back to being me. I was going out, seeing friends, getting out of the house, it was an amazing feeling.

My friends were incredibly happy to see me. You know, Alan was back, as a few of them had told me. In the start of July, again the same 10 to 12 window I was approaching, and again I started noticing things starting to creep up back again, and I thought it was time again to take my third journey. This time my wife sat with me, which was a great experience, and I was grateful to be able to share my journey with her. The second half of the journey we spent outside in nature, music, we had an ice firepit going in the evening. It was just another great, amazing experience for me.

And again, the next day the results were there again – pain levels were back down, these creeping things were a little less than they were before. I’m still learning about psychedelics and LSD, in particular, which was what I was using these past few trips. I just have a lot to learn. Am I going to have to take this all the time or is it going to be cumulative effect, and I’ll be fine over a certain amount of period? Am I going to have trip every 10, 12 weeks? Should I try different psychedelic like psilocybin and see maybe if it has similar effects, but it’s a shorter trip?

I’m grateful that I found something so quickly. I read stories about many people who have been suffering for years, decades with headache disorders and struggle to find relief. My heart goes out to them, and I have a lot of respect for them at what their journeys have been like. I’m fortunate and grateful that I have amazing support family, my doctors who have been amazing. I’ve been completely open with about all of these experiences. I hope that my story will help at least one person to find relief.

Remember you’re your own advocate. I’m hoping that this story will help open up awareness of alternative treatments and for research opportunities for all headache disorders whether it’s new daily persistent, migraine and all the different forms oral cluster headaches. I wish you all luck in your journey. Rise up and be strong. Take care.

Voice-over: Thank you for tuning into Spotlight on Migraine. For more information on migraine disease, please visit MigraineDisorders.org. 

*The contents of this podcast are intended for general informational purposes only and do not constitute professional medical advice, diagnosis, or treatment. Always seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition. The speaker does not recommend or endorse any specific course of treatment, products, procedures, opinions, or other information that may be mentioned. Reliance on any information provided by this content is solely at your own risk.