What if the most common affliction in human history was also one of the least understood? What lies behind the veil of headache, an invisible condition that affects billions yet remains shrouded in mystery, stigma, and misunderstanding?
Former New York Times journalist Tom Zeller Jr. brings us on a deeply personal and scientific exploration in his remarkable book The Headache: The Science of a Most Confounding Afflictionβand a Search for Relief. As someone who lives with cluster headaches, considered among the most painful conditions humans can experience, Zeller weaves together cutting-edge neuroscience, cultural history, and intimate memoir to illuminate the complex world of headache disorders.
You’ll learn why, until recently, no medications were specifically developed for preventing migraines or cluster headaches, how gender bias has shaped treatment throughout history, and what emerging technologies and treatments might finally offer real hope. From AI-powered early warning systems to psychedelic therapies, this conversation reveals the fascinating frontier of headache science.
Whether you experience headaches yourself or care about someone who does, this episode provides vital insights into an often invisible condition that impacts relationships, careers, and lives. You’ll discover why the simple word “headache” fails to capture the complexity of these neurological conditions and how we might begin to change the cultural conversation around pain, empathy, and healing.
You can find Tom at: Website | Episode Transcript
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Episode Transcript:
Tom Zeller Jr ACAST.wav
Jonathan Fields: [00:00:00] So headaches can literally derail your life. And sadly, I’m speaking from personal experience. They have been a part of my life since I was a teen, at times making it hard to function. And I’m not alone. For billions of people worldwide. Headaches aren’t just an inconvenience. They’re an invisible force that can completely derail you without warning. What’s fascinating is that until 2018, we didn’t actually have a single medication specifically designed to prevent them. I mean, how is that even possible? Turns out there’s a lot that we don’t know and a lot of things that we are learning. So what if everything you thought you knew about headaches was wrong, even? That’s where we’re headed today. My guest, Tom Zeller Jr, is a former New York Times journalist, current editor in chief of the Digital Science magazine, and the author of The Headache The Science of a most Confounding Affliction and A search for relief. And Tom brings both personal experience and investigative rigor to this exploration of headaches, weaving together cutting edge neuroscience, cultural history, and his own journey with cluster headaches, which are considered among the most intensely painful conditions human can experience.
Jonathan Fields: [00:01:06] And what we uncover in this conversation. It might surprise you from the complete absence of specifically designed preventative medications until just a few years ago, to the profound gender bias that has shaped treatment throughout history. We explore emerging frontiers in treatment, from AI powered early warning systems to devices, to pharma to psychedelic therapies, and examine why the simple word headache may actually be holding back both research and understanding. So whether you experience headaches yourself or know someone who does, this conversation offers vital insights into an often invisible condition that impacts relationships, careers, and lives in ways most people never see. And what emerges is not just a deeper understanding of headache, but a window into really how we think about, treat, and talk about invisible pain. So excited to share this conversation with you. I’m Jonathan Fields and this is Good Life Project.. I think a good starting point for this conversation is sort of like the exploration of headaches. Is you, you know, like you’ve got a new book literally called The Headache. And this wasn’t just an interesting journalistic exploration for you. This is deeply personal. So take me into that.
Tom Zeller Jr.: [00:02:19] So, I mean, is anyone who reads the book will quickly find out. I myself have what it’s called cluster headache. It’s less familiar, I think, to most people than, say, a classic migraine, which is probably the most familiar of all the primary headaches. But that was sort of the starting point for me. I started to develop these headaches in my 20s, and cluster headaches are pretty painful. I try to avoid getting into comparative measures, but cluster headaches are considered one of the most painful syndromes that a human being can experience. So it would be foolish of me to try to explain the dialectic of my life without including the mark that these headaches have have had on me. I never set out to, you know, at least not in the first 30 years of my journalistic career, set out to tell that story. It was something that I always kind of kept very private. People around me knew that I had these headaches, and necessarily some of my employers knew, although I took a lot of steps to sort of hide that behind a curtain as well, even from them. But when I finally decided to look into this as a book project, and we can talk about why that might have been too. But, you know, I started to realize that all of those characteristics, not just the pain, but the hiding, the sort of slight sense of shame or self-blame, the inability to really have serious conversations with people about it, the misunderstanding, even within the medical community, attempts to hide it from employers. All of these things were really, really common among a lot of the people that I talked to that was like, what pulled me onto this path, if you will.
Jonathan Fields: [00:04:00] You want to make curiosity this also, and I wanted to dive a lot more into surely the world of headache. But also before you even get there and you alluded to this, you know, you’ve a long career as a journalist and a science writer, right? And part of the ethos of journalism is like, you’re not the subject in the story. Yeah. You know, and there is a there is a tradition of sort of, you know, like experiential journalism where I’m going to put myself in this mix and like Michael Pollan or, and like, I’m going to report from the frontlines of my own personal experience, I think that’s still pretty much the outlier in that world where it’s sort of like, okay, I’m going to go out and talk to all the people, interview all the experts, find out what, and I’m going to report from the front lines of what’s happening to others, what I’m learning from others. So are you making a decision to say, well, I’m actually going to lead this and actually bring myself into this conversation? I’m curious for you, just as a journalist, like how that was for you.
Tom Zeller Jr.: [00:04:51] It was terrible. It was absolutely terrible. It was terrifying. I resisted it in the beginning, kicking and screaming as I discussed it with my original editor. And yeah, it was as everything that you say describes exactly how I felt as a journalist. I read about other people. I tried to take myself out of the story, especially a certain sort of journalism. I mean, you mentioned that there are exceptions, but I was, you know, spent the majority of my journalistic career at The New York Times where the voice from nowhere is sort of the default posture of storytelling at The New York Times. And you can debate whether or not that’s a good posture or a bad posture, but it’s the posture I learned. So when my editor, when my editor told me, well, we really need you to be a character in this book. I mean, obviously I’m writing it because I have headaches, but I thought maybe that would be a paragraph in the book and then the rest of it I could spend my time. But he seemed really convinced that it couldn’t be that. That I would only gain authority and also gain the trust of an audience for this book. If I was willing to unveil myself to and put myself into the story. So it was a struggle and I, I had to learn how to do it and how to do it honestly, because, you know, your temptation is to still kind of shade and duck and weave even from yourself. So it was really it was really hard. I’m glad you asked that, because it’s something that I think most readers probably wouldn’t talk into. But if you’re a journalist and spend any amount of time doing it, it’s absolutely terrifying to write about yourself.
Jonathan Fields: [00:06:25] Yeah. And I totally, you know, I’m not a journalist. I’ve written a number of books, and the very first book I wrote, I didn’t put myself in the story at all. And my editor came back to me and she was like, nah. She’s like, especially first book out. People want to know who you are, the one to have a sense for who you are and why they should care about what you’re doing and what you have to say and what you’re bringing to them. And I was deeply uncomfortable with that as well, just because I don’t like that level of immersion of my own story. It’s changed over the years, but it’s an uncomfortable thing, I think. No matter for most people. It’s sort of like fairly uncomfortable.
Tom Zeller Jr.: [00:07:00] Do you think you’re more comfortable with it now?
Jonathan Fields: [00:07:03] I am, and I think that’s just literally, you know, it’s 15 years of exposure therapy at this point.
Tom Zeller Jr.: [00:07:08] Yeah. I don’t have enough yet. I’ve told people that my next book is going to be anything but about me, if I can help it.
Jonathan Fields: [00:07:16] I’ve told friends on occasion. I said, you know, like my ultimate aspiration is for me to become invisible and let the work to always take the lead. But it’s a very hard thing to do. Especially in the aids that we’re living in.
Tom Zeller Jr.: [00:07:27] Yeah. And I think book writing and book reading is such a different animal in some ways. And, you know, I’m an avid reader, but I’d never really attempted a book before. And I think I learned that, you know, that there’s a different transaction happening than in other kinds of writing, that it’s very intimate. It’s the longest of forms. You’re going on this journey together. And so in the same way that you might expect your seatmate on a cross-country drive. To open up to you. You sort of. Or your. Yeah. You expect the driver to open up to you on that long ride?
Jonathan Fields: [00:07:59] Yeah. And, you know, it’s sort of like you have to answer the question out of the gate, like, why should I trust you enough to give you 6 or 8 or ten hours of my time? You know, in a world where it seems like I just don’t have enough anyway.
Tom Zeller Jr.: [00:08:10] Yeah, yeah.
Jonathan Fields: [00:08:11] So let’s drop into the world of headache again. So you, as you described, you have had cluster headaches since your 20s. Headache is an interesting term. It’s this big catchall. It’s a giant bucket. And into that bucket, you know, people have maybe heard clusters. I’m sure a lot of people have heard migraine tension headaches. And how do we distinguish between the types of headaches these days?
Tom Zeller Jr.: [00:08:35] That’s sort of a double edged question in a way, because how do we distinguish between the headaches medically is a very different question from how do we distinguish between headaches culturally. And I think that that matters in some ways. And in a lot of ways, the culture has influenced medicine too. And I get into some of that in the book. So I mean, the quick headline description of medical headaches are that there are headaches that are symptoms of some other malady. So you might develop a headache as a, as a byproduct of, say, a Covid infection or being dehydrated, having too much to drink the night before. We can discern what the the cause of those headaches are. And then there are primary headaches is just what they’re called in the medical literature. And these are headaches that are idiopathic. They are diseases unto themselves without any known cause. So migraine is probably the most familiar one you named tension headache is tension headache is probably the most common one, but they tend to be less severe and can often be treated. I don’t want to, like, diminish anyone’s experience with these, but they can often be treated with over-the-counter medications or some lifestyle changes. Not always. And they can be ruinous in their own way, but they’re the most common then migraine. I mean, I learned just staggering numbers of people. Primarily women have migraines. Something like 50 million just in the US alone. And then cluster headaches is the third of the major primary headaches. And then there are several others that are less familiar thunderclap headaches.
Tom Zeller Jr.: [00:10:07] There’s even orgasm headaches, which are spontaneous headaches that come on at the point of orgasm. That’s how it’s sort of parsed up medically in the culture. It’s a much more interesting question because we use this word headache metaphorically for all kinds of things, you know, for an annoyance, for things that are just driving us nuts, things that we don’t want to do. And we all use that term, and we all recognize that. I’ve even seen uses of the term migraine as a synonym in that very sense, not as a medical headache, but as boy. These taxes are a real migraine. And I think the fact that we traffic in those terms that way has made it harder for people with the medically parsed version of the disorder to really gain any sort of attention, whether it’s, you know, financially from the National Institutes of Health or from, you know, an employer who might think that you’re sort of, I don’t want to say faking it, but we’ve all had headaches. We all know what headaches are. And it becomes very hard to convince someone. Or at least that’s the feeling that I think that people with headaches take in. Maybe it’s not fair to. It’s something that we internalize, but there’s a sense that everyone’s had a headache. And if it’s bringing you down, then it’s you’re the weak one. I have headaches, too, and it doesn’t bring me down. So what’s wrong with you? There’s sort of that implied judgment. Is it fair? I don’t know, you tell me you’ve had headaches.
Jonathan Fields: [00:11:36] I think it’s really interesting because earlier in our conversation, you said you’re like. Like, I’m not going to compare, like, my cluster headaches to somebody else. I can’t tell you what my relative level of pain is compared to somebody else, either with their type of headache or whatever it is they may be going through, and I sense it. That’s one of the really big challenges with people who suffer headaches, is that you’ve got two people, both told that, you know, the pain that they’re experiencing. Here’s a checklist, okay, that qualifies as a migraine, right? One person is like, all right, I can kind of work through it like it sucks, but I’ll deal with it. Another person is leveled with it, can’t get out of bed, can’t be around sound can’t be around light. And maybe it takes three days to wash out of their system. And yet you have here two people side by side saying like, you’ve got migraines. So yeah, you can see how there might be a tendency for somebody depending on their social conditioning overlaid with that. Also to kind of say the other one, like, come on, buck up, or somebody who has a regular tension headaches, you know, like, come on. Seriously. Like, look, I have these all the time. You got to deal with it. Yeah. And there’s this whole social and judgmental overlay that happens that I think. And you write about this, that makes the actual pure headache related pain potentially compounds it.
Tom Zeller Jr.: [00:12:50] Yes. And I think that there’s there are a few things at work there. You know, we can probably if we take the population in aggregate, you can always be assured that some small percentage of them will be classic malingering, or they might be hypochondriacs or, you know, and that’s I even state this in the book. I think that’s okay. I mean, whatever field distortion has you showing up at the doorstep of a doc seeking help deserves empathy and deserves attention. But we can step back from that and honestly assume that some percentage of people just have something else going on and the pain is just their way of addressing it. But it beggars belief to think that someone who is retreating to the bedroom, missing their daughter’s wedding, missing functions at work, almost transforming from a person who’s just really engaged, social, extroverted, and then retreating into a dark room for days at a time. It beggars belief that any large percentage of them are not in anything but terrible pain. And yet. And yet it’s because of that word headache and because of the dynamics that you’re describing. That residue, I think, tends to sort of be there either or either overtly or or not. I mean, I’ve struggled even with the book to decide how much of this am I just kind of internalizing from the wider culture and then imposing on myself versus how much is really sort of being directly projected at me by people in my life? I think far fewer in the latter case, but you feel it anyway. I mean, I’d be curious to know if you ever. I mean, I would guess that with your headache. What kind of headaches do you have?
Jonathan Fields: [00:14:29] I have migraines, I have tension headaches, I have ocular headaches. So I have, like, a nice, a nice little collection of fun things that kind of like, have a rotation with me.
Tom Zeller Jr.: [00:14:37] Do you get the neurological accompanying symptoms with your migraines? Like the aura?
Jonathan Fields: [00:14:41] Very rarely. And the only reason that we even know how to answer that question is because literally decades ago, one time I got the classic the aura of the spotty vision, the. And I didn’t have a headache and, and but somebody who was familiar with migraine asked me way back then and like, do you have a headache? I was like, no. And they’re like, you may want to go home now. And sure enough, you know, like 20 minutes later, I was flat out for like the next 24 hours.
Tom Zeller Jr.: [00:15:07] Yeah. And flat out because, I mean, the pain was one the major symptom, the salient system symptom for you was just. Yeah. Yeah. Was that something that you wanted to talk about readily with with people? No no.
Jonathan Fields: [00:15:19] No. And this is one of the things you write about. Right. Also is just like and we not too long ago, we did a whole episode on sort of like invisible pain, especially chronic invisible pain when other people can’t see it. It’s really hard for you to know, like you want. There’s this tendency to hide it because you feel like you’re going to be judged for it. You won’t be believed. And then other people kind of look at you like, I don’t know, you look okay.
Tom Zeller Jr.: [00:15:41] Yeah, You seem fine. I mean, there is so much bound up in the credibility of a wound, right? If I can show you this thing that’s causing me the pain, then I suddenly gain a coin of credibility that I. That people with head ache and other kinds of invisible pain. And I mentioned some of them in the book, too. Yeah. Just can never get there. Pockets are always empty on that front. And so I think that that’s why we, you know, there’s a certain shame factor in, I think, attending headaches. I think some of it has to do with we would be remiss if we didn’t mention that, you know, most migraines are women, like, I think by 3 to 1. Not all. I mean, men obviously get migraines, too. And but it’s it’s almost certainly a hormonal component happening there. And when we can’t figure out historically in medicine, when we can’t figure out what’s ailing a woman, it’s because she’s hysterical. That’s that’s what we’ve tended to sort of describe it as. And that is sort of that blended out, I think, through the culture over the last 200 years to define headache writ large. If you seem fine, so you must. It must all be in your head.
Jonathan Fields: [00:16:50] There is this really interesting gender overlay there. If over the last couple of hundred years, like women experience this on a 3 to 1 basis, meaning they’re the ones who are most likely to seek help for it, I would imagine, or at least in the beginning. And then because it’s nothing observable, there is this gender bias and there’s these sort of like the classic labeling of, you know, it’s gaslighting, medical gaslighting, saying, well, exactly. Um, then you sort of expand that out into the culture and then there’s association. Well, like pretty much maybe most people who have this thing going on, then, you know, it’s just there’s other stuff in their life. They’re making it up. Whatever’s going on. Like, it’s not a real thing.
Tom Zeller Jr.: [00:17:29] Yeah, yeah, it’s not a real thing. Or, you know, the classic. You just need to relax. You’re too high strung. I mean, there was there’s a whole rich tradition of of comical but terrible literature from the mid 20th century, depicting women with migraine as being frigid. If they would just have sex with their husbands more, their headaches would go away. I mean, and this was this was literally advice being dispensed by physicians in popular magazines and newspapers. And interestingly, even at the time and, you know, there are some really good books that sort of cover this in greater depth than mine. Joanna Kempner is one author that anyone interested should look that up. I think her first book is called Not Tonight, and she gets into this pretty deeply. But men during the same period who have migraines or complained of migraines or were diagnosed with migraines, were described with a whole other typology. They were too success driven, they were too ambitious, and they were too intelligent. But women were described with the same condition as being too frigid and too stressed. So I mean, the the sort of gender biases are obvious and we’ve obviously grown beyond that. But there’s still a residue. You know, there are anecdotes in the book where I spoke to two women who still experience some semblance of this in the privacy of their doctor’s offices today in 2025.
Jonathan Fields: [00:18:54] There’s an impact there. Like if you show up and you’re in pain, then somebody tells you it’s not real. Then you’re also showing up with your history, with your psychology, with like, your patterning, your conditioning, your traumas. And you may then bring to that pronouncement, okay, this is a person of authority. It must be right. And then whatever wounding you’re bringing to that and the shame and the blame saying, well, this maybe this is my fault. Maybe then you take the actual physiological pain and you compound it with just like psychological heaviness that creates this really awful spiral.
Tom Zeller Jr.: [00:19:31] Yeah, a terrible spiral. And it also complicates the way that we talk about things that do I mean actually have probably some role to play in, in migraines and maybe cluster headache too, which is that, you know, these are very sort of chemically driven, mechanistic in a way that is still somewhat invisible to us. We’re still trying to figure it out, but almost certainly, you know, a neurobiological disorder, a breakdown of a sensory system that can be exacerbated by stress, for example. But it makes it harder to talk about that stress as a hormonal event, a release of cortisol, or release of other hormones that can interact with certain receptors and exacerbate pain. It’s not a clean, linear connection, but it certainly plays a role. But if you’re telling me that I suffer from this disease because I’m a stress case, you make it really hard to have sophisticated conversations about hormone wash and the tides of our our blood system in a meaningful way that isn’t sort of dripping with bias and judgment and simplicity.
Jonathan Fields: [00:20:40] And we’ll be right back after a word from our sponsors. I mean, let’s dive into a little bit then. Um, what we do know about where headaches come from, because and this is something that you deepen into. You know, I remember very early in my experience being told, well, this is a blood pressure issue and that’s how it’s going to be treated. And there seems to be evolving theories about what is actually at the root of pain in your head.
Tom Zeller Jr.: [00:21:09] I mean, I have to tell you, I started out in some way driven by the fact that this surely must be knowable. The surely must be something that, you know, a headache in some ways. We know more about the common cold than we know about headaches. So I started out probably a bit naively thinking, well, if I just talked to the right neuroscientists, they will lead me down the molecular pathway that leads to pain And surely, I think even most of us who have. Who have never investigated this, if asked, would probably say, well, blood vessels in my head are throbbing. They’re bumping up there, mashing up against a nerve ending somehow. And that’s generating pain. I think probably a lot of us would think if we were asked to describe what is going on in a headache, we would say that. And for hundreds of years, that was sort of the prevailing theory. I mean, there were there were other flavors and other explanations that involved the humours, but there was a general sense that, you know, the flow of, of blood into the brain had some major role to play. We don’t know in 2025. That’s necessarily true. And, you know, one of the most entertaining things for me as a scientist journalist was to talk to experts from different camps on this question because they they vigorously disagree with each other on the role that the blood vessels play at all and headache.
Tom Zeller Jr.: [00:22:31] So if I were to, you know, give my best guess of what a typical neurologist would say that isn’t necessarily caught up on the latest literature. They would say, well, it’s probably some, you know, an activation of the blood vessels in the meninges, which is the the only innervated part of the brain. It’s, it’s the layer between the skull and the gray matter itself. It’s the only thing that could experience pain. They would say. So it must be something to do with the blood vessels and the nerves in that layer of the brain. And probably if they know a little bit more, they would say the trigeminal nerve, which is the nerve that provides sensation to your face and parts of the sides of your head, is mixed up in this business. Somehow there’d be some disagreement over whether or not that’s the trigger, if that’s where it starts. But certainly we know that certain molecules are released from the trigeminal nerve neurotransmitters During a headache event. So we certainly know that it’s involved. And that has led to some interesting therapies, which I’m sure we’ll talk about. And they would probably say if they knew even a little bit more that the hypothalamus, it’s probably a central player in this, although we couldn’t say exactly how is it the prime mover does something go wrong. And the hypothalamus and then set everything off and then trigger that inflammation in the meninges? We don’t know for sure.
Tom Zeller Jr.: [00:24:01] And then I would say if they were really at the cutting edge and maybe even playing at the fringe of headache science, they would say everybody’s wrong. There have been plenty of, of studies that show that the blood vessels are not activated at all in some people experiencing a migraine attack or a cluster attack. There have been studies. There was a classical study of a cluster headache patient, for whom it’s just almost axiomatic that the trigeminal nerve is a central player in this, who had that nerve severed at the point during a surgical severing. To relieve his pain. And he still had cluster headaches. So if a scientist was really at the edge of things, they would say, we really, absolutely don’t know. We know all these structures are involved. We know there’s chemistry involved, but we don’t know why, and we don’t know why. It persists in the human animal, almost uniquely, probably in the animal kingdom. I mean, we don’t really have good evidence that other animals sort of fall over and hold their heads very often. Maybe we’re just not seeing it, but probably unique to the human animal and something that probably should have evolved out of the human animal by now. So there’s a lot of discussion and interest in why this thing also persists. So that’s probably a long winded explanation, mechanistic sort of description, the best I could do.
Jonathan Fields: [00:25:23] But it’s really interesting, right? Because, you know, you’re describing a scenario where this is something that affects a huge percentage of the population. It has affected the huge percentage of the population for generations, and yet we’re still largely at a loss to understand the source. Like where is this actually coming from? And the theory is that it became prevailing. Theories are now really kind of like on the way out. And there’s all this as you described, there’s all this research that says, but we literally can look into somebody’s head, like in the middle of, of a pain about and see that this is not happening. You know, it can’t really be the thing.
Tom Zeller Jr.: [00:26:02] Yes. And I think that that’s what’s really confounding for I mean, on some level, you know, you have to allow that the brain is an incredibly complex organ, the most complex and really, really hard to study while subjects are still using them. You know, in some ways it makes some sense. But I do think that a lot of the sort of presumption and paradigm stasis and bias in earlier eras contributed to our ignorance. Now, one thing that we probably should mention is that it’s not just the culture, or it’s just not ordinary people carrying around these judgments about headache. One one byproduct, I think of of the weird bias that migraine brings with it is that even among neurologists and neuroscientists, it’s kind of considered not a sexy thing to study, you know, and they’re kind of embarrassed by it. I talked to researchers who were deeply interested in studying headaches, but were told by colleagues, you don’t want to do that. It’s not, you know, it’s not it’s not a big problem. It’s not that, you know, headache patients are a pain to deal with. You don’t want to mess with that. And they’re discouraged. They’re discouraged from going into it. And I you know, I think that too is is residue of a sort of bias that we carry as a culture and also why we remain as ignorant as we are.
Jonathan Fields: [00:27:24] Yeah. It’s like if your primary researchers are discovered from really allocating Getting like time, money and energy to it. Yeah. It just it slows the whole process of understanding what’s really going on. And then in turn, the entire process of either treatment and or cure at some point.
Tom Zeller Jr.: [00:27:40] Yeah, it seems really reasonable if you’ve got a population in the tens of millions, probably a billion worldwide, the amount of economic drain that these conditions represent is just staggering. It’s almost laughable when you start to dig into the numbers and realize just how much missed work, how much missed consumerism, how much missed life there is because of these absolutely debilitating conditions. And they are debilitating. I mean, it sounds like an overstatement, and I was sort of hesitant when I first started writing the book to talk about it in those terms. But I think even the World Health Organization considers someone in the throes of a migraine to be as disabled as a quadriplegic. I mean, they actually use those terms, which I recoiled from that analogy at first because it seems absurd and it seems to be stealing something from its just a head where it can’t compare a headache to quadriplegia, right? But if you break it down, I mean in the throws, when you were laid out with that migraine that you had that was just so painful you couldn’t do anything, could you? I mean, you were functionally disabled during that period.
Jonathan Fields: [00:28:51] I wouldn’t personally make the analogy to say that, you know, like, okay, so like I had the equivalent functionality of somebody who is experiencing quadriplegia, but has it been profoundly disabling for like short moments of time in my life? Yes. And I’m probably not at the extreme pain and of the spectrum given people, even within my own orbit. You know who I know who experience it on just a completely different level from me, but it makes it so that you can’t function.
Tom Zeller Jr.: [00:29:19] And it’s this really weird transient disability, whereas, you know, you’re like, you’re forever cured. You know, in most cases, I mean, some people do have chronic forms of the disease, which I can’t even imagine. But, you know, for most people it comes and it goes, so you’re disabled and then you’re not or you’re, you know, if you’re not fully disabled, you’re certainly diminished and then you’re not. And to some extent, that also has contributed to a sense that, well, this isn’t something that we really should spend any money on, despite the fact that were you to introduce a cure for headaches, uh, writ large or just prevent them from happening, the amount of sheer economic benefit from that would be absolutely staggering on the order of, you know, whole GDPs of some countries.
Jonathan Fields: [00:30:05] On top of just like the the lessening of suffering on a scale that is astonishing.
Tom Zeller Jr.: [00:30:10] Of course.
Jonathan Fields: [00:30:11] There’s something I’m really curious about, and I wonder if you came across any research in your exploration. So a million years ago, I used to teach yoga in New York City, and there would be nights where 630 would come. I’d show up at my studio. There would be a packed room full of like 50 people. Matt to Matt. And they’re expecting me to show up and give them 90 minutes. That will be worth the time they just gave me. And my head would be pounding. Absolutely pounding. I was in the middle of a migraine. I could turn down the lights. I could sort of like, adjust. And I noticed a weird thing happened pretty often, right? I would walk up and I would. Then I would walk into the room. My head is pounding, you know, but this was my job and I owned the studio also. So it was sort of like I, you know, this is just I had to quote, suck it up. This is what I do. Right. People were expecting this of me. So I went in and then I began to notice this repeated pattern, which is that, like I get a couple minutes into teaching, like the last class and all of a sudden I’d be like, oh, my head is pounding again. And it got me really curious about the role of attention in the experience of headache pain. And I know attention just in general, chronic pain, like there’s there can be a really strong association, but it was almost like when I stepped in, I said, this is my job. I need to be utterly present here. I need to just completely shift my attention outward to these people in the room and lose myself in that moment. That, for all intents and purposes, I did not have a headache. But the moment that my attention, the last person left in my attention shifted back into me, it was there again. I’m curious what your take is on that. From the research that you’ve done, the people you’ve talked to.
Tom Zeller Jr.: [00:31:52] There is a fair amount of decent evidence, I think, that cognitive behavioural therapy, for instance, works for some people. I don’t think it works for all people, but there is some amount of that research that suggests that you can will yourself. Some people can will themselves to a place where they either are able to calm that pain or set it out of a frame of reference enough that they’re able to function without it. They’re doing that consciously. It sounds to me like you were doing it unconsciously in some way.
Jonathan Fields: [00:32:27] Yeah. And at the same time, like at that point, like I had already started to develop a pretty dedicated meditation practice. So, like, I had a practice of directing my attention and holding it in a particular way. And I wasn’t consciously trying to do that, but what I was consciously doing was saying, I know where my attention needs to be for this fixed window of time, and I need to give it all. Yeah. And it was almost like there was no room for the pain while I was doing that.
Tom Zeller Jr.: [00:32:51] Yeah. And, you know, I think that that’s a congratulations. It’s extraordinary that you’re able to do that because I, I think a lot of people there’s a part of me that, you know, here’s your story and doesn’t want to suggest to listeners who could never do that in a million years.
Jonathan Fields: [00:33:09] Totally get.
Tom Zeller Jr.: [00:33:09] It, either, because that that this is something that they could think themselves out of, because in some ways that does tend to shift it back, you know, a certain amount of responsibility for the disease back onto the patient in a way that I’m loath to do.
Jonathan Fields: [00:33:23] And I’m with you. The last thing I would like either of us want to do is sort of like, like shame and blame somebody for not being able to have this experience.
Tom Zeller Jr.: [00:33:29] At the same time, I think that there is a natural tendency, I think, when we experience pain. I mean, I would add the caveat in my case, with a pain of a cluster headache, I will allow and issue the caveat that, you know, I can’t know how anyone else would experience a cluster headache, but I experience lots of kinds of pain in my life. I’ve had terrible ankle surgery. I’ve practically broken an ankle while running. I’ve had any measure of painful experiences, but this is a category difference, and on the intensity scale of I would not be able to do what you did and I would be literally on the floor just writhing. It says to me, it’s very much like the intensity of a pain that you might get from having your hand on a hot burner. Um, it’s that level, but not stop. You can’t. You can’t take your hand off the burner. I’m not sure I could even gather. Thoughts to. I couldn’t gather thoughts to focus on something else. That said, the idea that you that we try to distract our attention from the pain is so native to the experience of pain and the human animal that we, you know, which is why people in often do self harm in other ways during the throes of a really serious attack, both migraines and and cluster patients.
Tom Zeller Jr.: [00:34:46] But I would you know, I’ve never talked about this out loud, but you know, yeah, I would grind, you know, in the experience while having the headache. I would I would sometimes grind my fingers into my scalp and the spot where the pain was to the point where, you know, I’d be bleeding and in an attempt. And it does. Actually, I don’t want to say help, but it’s a distraction. You’re focusing your attention on other stimuli in the body. I don’t think, though, that, you know, a classical migraine or a cluster headache, the molecular sort of event that’s happening, the neurological event that is happening is dominant and almost impossible to just look away from. I think what you’re what your experience is, is pretty remarkable. But I also think that it does have affinities with, you know, they try to teach this. I visited facilities where cognitive behavioral therapy and grabbing control of pain and trying to refocus. It is a very common strategy, and for some people it really does work. And I think it probably has something to do with the level of intensity of the pain at some point. You know.
Jonathan Fields: [00:35:53] I’m sure it does. Yeah.
Tom Zeller Jr.: [00:35:54] If there was a dagger going through your head at the beginning of that yoga class, you probably couldn’t think your way out of it. I’m guessing. But maybe maybe you could. I don’t know.
Jonathan Fields: [00:36:05] Agree? No, no. And I think that’s probably right. You know, and we’ll be right back after a word from our sponsors. Let’s shift gears a little bit and talk about treatment, because there are a number of different ways that we approach headache. Let’s start out by talking a little bit about pharma, because I think that’s a go to for most people in the beginning or else, like that’s the first thing is that they try, you know, beyond whatever is over-the-counter, which really may for some, depending on what they’re experiencing, help in some way. But I think after that the next thing is, okay, so like what might be prescribed to me, and there are a handful of common medications that work in very varying degrees. So take me into this a bit.
Tom Zeller Jr.: [00:36:47] Yeah. So I mean, the the most interesting thing to me that I discovered, and I guess I sort of knew this intuitively, is that there are up until just a few years ago, and by few, I mean 5 or 6 years ago, there were no medications on the market at all that were expressly developed to treat a migraine headache or to treat a cluster headache in a preventative way. There was one in the 1960s that was incredibly toxic, a method which is now no longer prescribed, although it does have some clinical use, but it also created all kinds of nasty side effects and then every other drug that’s been prescribed. And, you know, in my case, for instance, it would be verapamil, which is a calcium channel blocker. Also very common prescription for migraine patients. Uh, topiramate, which is a strangely an anti-epileptic drug that seemed to have some affinity or seem to help some migraine patients for reasons that we couldn’t explain, also became a default prescription for migraine patients and for cluster patients. And, you know, up until, say, the 1990s, that kind of was it. You might get caffeine pills. Kafka was a common, uh, migraine prescription. And then in the 1990s, uh, there was a wonderful discovery of sumatriptan, which is a drug. If you have migraines, I would guess you’ve probably been prescribed at at least once. Mhm. Does it work for you?
Jonathan Fields: [00:38:17] Ish.
Tom Zeller Jr.: [00:38:18] Ish. Okay. Yeah. It does work for a lot of people. Yeah. But not everyone. And you know, one thing that I learned in doing this because I hadn’t really covered PhRMA before, but if it works for about half of people, which is a roll of the dice, really, that’s considered a sensational, sensational drug discovery. If it works for 60% of people. You’ve you’ve struggled. And yet, you know, for any given patient, it’s a crapshoot. You know, which seemed really like pathetic to me. But that’s really what we’ve been looking at. Sumatriptan was a great discovery. It sort of grew out of a lot of interest in serotonin, which we were only starting to learn anything about in the 50s and 60s in the 70s, we started to isolate some receptors in the brain that seem to have an affinity for this molecule, that it was Glaxo who was looking at it seemed to have some interaction with head pain in a way that we couldn’t explain, but did seem to work. So in the 1990s we got what was called Image Trek’s at the time, which is it’s now generic, and the drug was sumatriptan, and it was great, and it was a way to treat an individual migraine or cluster attack.
Tom Zeller Jr.: [00:39:29] I couldn’t take it by pill because it just didn’t work fast enough. You know, a cluster headache comes on in seconds with no warning, and to wait for a pill to take effect would not be would not be the most effective therapy. But anyway, that drug was great and it worked well enough for some people, but it didn’t really solve anything, and it certainly didn’t prevent headaches, which was part of the problem. So you couldn’t you can’t keep popping sumatriptan because eventually you’ll get the body adapts and you get into this terrible cycle of relapse headaches. So the sumatriptan wears off and now you’ve got a really massive and even worse migraine than before. You take another treatment trip down and and you’re in this, you’re caught in a cycle that’s just miserable for folks. So even by the 1990s, 2000, 2010, we didn’t have anything to prevent a migraine or a cluster headache.
Jonathan Fields: [00:40:22] Yeah. Which again, is pretty stunning. Just giving the prevalence and the impact.
Tom Zeller Jr.: [00:40:26] Yeah, yeah. But behind the scenes there was some swashbuckling science going on that we don’t read about. And in some ways, despite the funding profile, that headache is enjoyed or not enjoyed for the last many decades. I mean, it tends to be wildly underfunded. And so this research, if it gets done at all, is usually funded by industry anyway, and only if they have a hopeful target. And they started to have one in the 90s and 2000, in a molecule called cGMP, which is calcitonin gene related peptide. And it’s basically a neurotransmitter that was discovered in the 80s and threw through some really interesting experiments. Some scientists in Europe and in the United States figured out that during the throes of an attack, the blood seems to become awash in this strange cGMP molecule, and enough of them were curious to know why. That they developed an antibody unlike a typical, like synthesized chemical medication. These are biologics that, you know, they developed large molecules, stuff that are very, very, very like uniquely targeted to just this receptor for cGMP. And lo and behold, a lot of people that in early testing stopped having migraine headaches. It was almost kind of miraculous.
Tom Zeller Jr.: [00:41:46] Like they would, you know, it wasn’t this was not treating the pain of a headache. It was preventing women, particularly, who had had 15, 16 terrible grinding migraine days a month, suddenly gone for the first time in their lives. And I talked to people for whom it was like awakenings. I mean, they just were like, this is like, I have my life back and all of it, you know, Tied to that really curious, interesting molecule that until 2018, which is the first time this market stuff hit the market, had never really been commercialized into a medication. So it was this sort of a very hopeful moment. And I think we’re still in that hopeful moment, in that there are now scientists who are trying to figure out, is there a more consequential molecule that we could be targeting that would be more universal, or is there some sort of mechanism or receptor further downstream that would work for not just 50% or 60% or 70% of people, but, you know, maybe all, and that’s what they’re working on now. So that’s it’s actually a really great time to have a headache.
Jonathan Fields: [00:42:52] Yeah. I mean, it’s really interesting. I’ve gone through the whole cycle. I currently take an anti cGMP as an injection on a monthly basis. And I was very doubtful because, you know, like I have a lot of history of things not working all that well for me. So I kind of hesitantly said, all right, I’ll do this. And sure enough like three months in, I was like, wait a minute. I’m barely ever getting headaches anymore. And I was like, I don’t believe this because maybe my sleep is better, maybe my stress is a little better, maybe my nutrition. But like what? Like, and it took a while for me to be like, no, this is actually the major thing that’s different right now. And it was I, you know, I still have a quote, Rescue Med if I really need it. Yeah. But it’s also it’s a one time version of that same thing. Yeah. And it is miraculous.
Tom Zeller Jr.: [00:43:40] It’s kind of miraculous. And you, you know, you may well be you know, there’s still a lot of disagreement within the industry and among neuroscientists as to like how what is the real world efficacy rate of the CRP meds. And the more I talk to people, I mean, you talk to some and they’re just like, it’s a miracle. It’s everybody. All my patients are being cured by this. But the more you talk to people and the more you sort of look at survey data, it starts to kind of ratchet down closer to that 50% mark. That has been true of a lot of medications, maybe a little bit better. But the saline takeaway, I think, is that there is this group of people who are super responders. Not only does the CRP stuff work, it really, really works for people who have the genetic makeup that we don’t fully understand. And you might well be one of them, and I might be too. For a cluster, you don’t take it on as an ongoing basis, you take it a larger set of injections at the first sign of of an attack. It’s characteristic of of cluster headaches to last for roughly 2 or 3 months of daily multiple grinding headaches and then disappear entirely. So you just take it enough to stop that cycle, and then it’ll take it again. And I was as skeptical as you. I’ve tried so much weird stuff in my life. It’s not much weirder for me to inject this stuff into my bum and hope for the best, but I didn’t think that it really was going to make a difference. But I believe it did. I believe it did. For the first time in my life, stop a cycle of cluster headaches from coming on. The big question marks with cGMP is like you’re taking it on the regular, you know, what are the byproducts of suppressing cGMP to that extent for long periods of time? We don’t know. I mean, those those questions aren’t answered. There is some evidence that even among super responders, that the effect starts to wear off over time. So how long have you been taking.
Jonathan Fields: [00:45:37] For me, it’s less than a year. It’s fairly new. So yeah.
Tom Zeller Jr.: [00:45:41] It’s fairly new. Yeah. But there is some evidence and it’s not, you know, bulletproof. But there is some evidence to suggest that after a few years they start coming back. And the cGMP, you sort of some patients who have been taking it since 2018 are now finding themselves sort of back to the drawing board and really kind of a heartbreaking way, to be honest.
Jonathan Fields: [00:46:04] I would imagine, because you kind of think, oh, wow, like, this is it. I’m good. And all of a sudden, it’s back. I want to talk about another category of interventions and treatments, which I think is really fascinating, like neuromodulation devices. And this seems to be sort of like this new wave of actual devices. So this is like a less invasive type of thing where instead of taking something that’s going to alter your internal chemistry, there’s something that you generally wear or put on on the outside or go for a treatment. Um, take me into this category of neuro modulators and devices.
Tom Zeller Jr.: [00:46:38] I have to say, I’ve not personally tried any of them, but I’ve talked to a lot of patients who have and swear by them, and I’ve talked to a lot of doctors who prescribe them and who more or less think whatever works, whatever gets you through the night if it’s working for someone, God bless. That said, the theory behind them has a lot of science behind it. I mean, to the extent that headaches are presumed to be, at least in large part, if not in whole part neurological. So there’s a signaling process going awry. It stands to reason that if you can interrupt that signaling process in some way through an electrical stimulation, you might get some pain relief. So there’s the cephalic device, which is it almost looks like a I think of ISIS when I’m, when I imagine it’s, it’s a, it’s a bit of a crown with a diamond that sits on your forehead and it sends electrical signals into the nerves of, of the face. And in some people, this helps interrupt the pain of, of a migraine headache, the vagus nerve, which I’m sure you’ve read a lot about and probably even discussed on the show, is a really prominent superhighway for sending signals up and down throughout the body, particularly from the gut. Um, and there is some sense that there is a gut brain connection that has information for us on migraines, too, although we don’t fully understand it. But these devices can be held to the neck and it’ll send electromagnetic signals into the vagus nerve, and in some patients it does seem to help alleviate a headache.
Tom Zeller Jr.: [00:48:10] There are some that go on the back of the neck. There’s a whole forest of them. There’s one now that attaches to the arm, strangely enough, and travels up the nerves on the inner part of the arm. That seems really among the most promising of the ones that I’ve I’ve heard and read about. Uh, I don’t think that there’s a lot of there’s not a lot of clinical data to go on. I mean, most of these are developed by device makers who have different hoops that they have to jump through at the FDA. So we have to take the studies that they produce at face value. I’m not saying that they’re they’re faked or anything, but is it the best, most robust set of data out there on any of these devices? No. So there’s a part of me that seems that remains somewhat skeptical of them as any sort of universal. I’m going to catch hell for saying this as some sort of universal solution for people. That said, it clearly works for some people, and if it works for you, then I think that you need to ask no more questions and just kind of, yeah, carry on. And this is something, by the way, I’ll mention that there’s some evidence, even in ancient times, that we understood that electrical shock can have some interaction with the brain and head. So there’s some speculation that even as far back as, you know, ancient Mesopotamia, we had some idea that an electric shock could help a headache. So it’s not crazy that we would think this stuff could work.
Jonathan Fields: [00:49:39] And if you buy into these, you know, like the the notion that there is some sort of electrical wiring issue that’s happening, that’s like at least contributing in a major way, then if there’s a way to alter that electrical process.
Tom Zeller Jr.: [00:49:53] Okay, absolutely.
Jonathan Fields: [00:49:55] So whether we’re talking about, you know, like pharmaceutical intervention devices, it’s still kind of like, you know what? Try it all until you find something that works, because we can’t point to any one thing and say like, I have a high expectation this is going to work for you and what you’re experiencing, which is on the one hand, well, how cool. There are a whole bunch of different things that I can try. And there’s, you know, like a universe of possibilities here. But on the other hand, potentially just really frustrating because if you start to ratchet through and you’re trying it and you’re really giving it your all, it’s like, nope, not this. And then you go to the next one. Nope. Not this. Then you go to the fancy devices. Nope, not this one, this one, this one. And then you’re you’re taking time. You’re spending money. Oftentimes the newer things, whether it’s pharma or a device, they’re not covered by insurance. Or you have to really fight with insurance to get some level of coverage. So it’s time. And also like not infrequently, a fair amount of money. And you have no idea if it’s going to help until you actually do the thing.
Tom Zeller Jr.: [00:50:52] Yeah. Such is the journey of a lot of people with headaches. I mean, they are. One data point that emerged for me in the book was that headache tends to strike people in the prime of their life, right? In their most productive years. It often starts in puberty or shortly thereafter, and often enough tends to wane for a lot of patients as they reach middle age or their elder years, and the rates of polypharmacy among that population, who otherwise should be sort of in their most robust years of their lives, are commensurate with geriatric populations in terms of the amounts and numbers of overlapping drugs that they’re taking. Just in order to find relief. Many patients are taking 6 or 7 different kinds of drugs, using devices overlapping just to try to make it through the day and piece together in existence. And that’s the grim tableau that I think a lot of headache patients face. I don’t want to conclude on such a grim note, because I do think there is a lot of interesting science happening. But in some ways, the takeaway from the book, I think, would be it’s happening finally, and in spite of a lot of headwaters that had to be overcome.
Jonathan Fields: [00:52:03] And also, you know, like as we have this conversation compared to if we had had this conversation a decade ago, ten years ago, there’s a lot more that is available to explore today. And it feels like the pace is accelerating, whether it’s through like funding, which is a, you know, as you described, a challenge, whether it’s through private industry or now device makers. And, and I would imagine that AI is going to play a really interesting role. So like in the development of new ideas and new treatments and solutions and incredible ideas.
Tom Zeller Jr.: [00:52:35] Yeah. Can I share one anecdote on the AI front? Yeah, yeah. One of the main guys that I talked to is a researcher from UCLA is developing a camera. It would be on your computer that looks at you throughout your workday. And through the use of AI training would be able to know it would alert you just by looking at you, that you’re going to have a migraine in three days. So it can. It can detect. That’s sort of the goal and that’s what they’re working towards. But there is some evidence that that might come to pass, because these AI models are able to detect subtle fluctuations in skin temperature and, and blood pulsation just by watching your skin move. And there’s some good evidence that your migraine, anytime you get one, started developing as a storm several days before. So yeah, AI is going to have some fascinating roles to play. And all this.
Jonathan Fields: [00:53:29] Yeah, I mean, imagine you pair that with, you know, sort of like a camera and then you’ve got a wearable on that’s like reporting in a whole bunch of different things where you can’t, you know, it’s like when people were reporting that certain wearables were actually able to detect, you know, during Covid 3 or 4 days before any symptoms appeared, when somebody had a high likelihood of actually like getting that. And I’m excited about the future of integrating things. Then we go from and then we’ll wrap up shortly after this. You know, we also go from AI, which is the absolute cutting edge. We don’t know what’s coming, but it’s happening so fast. And then we go way back in time to psychedelics and interesting research being done in particular around psilocybin and headaches right now.
Tom Zeller Jr.: [00:54:08] Yeah. And that’s sort of how the book starts is, you know, I’ve known for a while that this this was percolating. It’s particularly useful, or at least it’s experimented with in the population of, of cluster headache patients who really were sort of the driving force behind science on this. It was this, this really interesting story of ground up science. This is another joy and a Kempner book. I keep plugging her books, but she has a book out now that’s about this group of cluster headache patients who saw that psychedelics were helping them with their headaches and created this online culture where they they came up with a regimen that seemed to work for a lot of people and then brought it to researchers at Harvard and said, you should look into this, you should look into this. And finally, some some researchers listened. But at the end of the day, it makes some sense because you’re playing around with the same serotonin receptors in the brain that sumatriptan is, that ergot medicines were also playing around with. There’s something in that particular family of receptors that definitely has a common role in migraine and, and cluster and all primary headache pathophysiology, but we don’t quite know what it is. So yes, psychedelics a huge area of research. Now I think it’s going to be some years just because the populations are small. It’s hard to get funding for these studies. But you could do it like I did and experiment on your own. I’m not advocating for it, but it can help people. It did not work for me. Have you ever tried?
Jonathan Fields: [00:55:36] I have not. Which is in Boulder. That makes me the weirdo here, by the way. So it’s like it is a town where there’s a lot of psychedelic both, you know, like therapeutic and in, you know, like, and.
Tom Zeller Jr.: [00:55:46] And recreational and.
Jonathan Fields: [00:55:48] Recreational. It’s a little bit of a weird place. Um, if we zoom the lens out here a little bit. Are you optimistic?
Tom Zeller Jr.: [00:55:55] Yeah, I mean, I’m optimistic in that I think scientists are finally paying some attention to it. I think the recent success of the CRP medications, such that they are, have provided a signal to Big Pharma that there’s there’s money to be made here. And let’s face it, you know, in the mercenary world we live in, we need pharma to pay attention. And if they think they can make a buck, they’ll try to do that. So I think that there is a certain momentum that’s happening now on headache science. And I guess there’s a part of me that’s optimistic that the book itself will give us some permission to talk about it in ways that we haven’t, and maybe expose some of these forces that have been kind of a drag on, on headache research and on on headache, sort of as it’s distilled through the culture that those will be exposed in a new way and that people can talk about it openly and honestly. You know, most people that I talked to are seemed most hopeful that, like people they know who don’t have headaches will have something they can put in their hand and say, see, this is this is what I’m going through. I guess I’m hopeful that maybe that’ll help too.
Jonathan Fields: [00:57:04] It feels like a good place for us to come full circle as well. So I always wrap with the same question here, which is in this container of Good Life Project.. If I offer up the phrase to live a good life, what comes up.
Tom Zeller Jr.: [00:57:15] To live a good life to me is to have your health, to have people around you who support you and are there for you whether you’re healthy or not. And to be in a world where we don’t judge, where we we sort of stop judging each other and measuring our pain against one another and creating hierarchies of of suffering. I think that, to me, is a good life.
Jonathan Fields: [00:57:45] Hmm. Thank you. Hey, before you leave, if you love this episode, safe bet, you’ll also love the conversation we had with Dr. Jennifer Heisz about how movement eases the mind by reshaping your brain. You can find a link to that episode in the show notes. This episode of Good Life Project was produced by executive producers Lindsey Fox and me, Jonathan Fields. Editing help by, Alejandro Ramirez, and Troy Young. Kristoffer Carter crafted our theme music and of course, if you haven’t already done so, please go ahead and follow Good Life Project in your favorite listening app or on YouTube too. If you found this conversation interesting or valuable and inspiring. Chances are you did because you’re still listening here. Do me personal favor. A seven second favor is share it with just one person. I mean, if you want to share it with more, that’s awesome too. But just one person, even then, invite them to talk with you about what you’ve both discovered to reconnect and explore ideas that really matter. Because that’s how we all come alive together. Until next time, I’m Jonathan Fields signing off for Good Life Project.