Exploring the Reality of Cluster Headaches with Tom Zeller Jr.: Part One

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Peters:
And I am Dr. Katy Peters, and this is the Brain & Life Podcast. Hello everyone and welcome to all of our listeners for the Brain & Life Podcast. I'm your co-host Dr. Katy Peters. And what I think is very interesting is we've had several authors on this podcast and they usually are inspired to write about their experiences with a neurologic condition, or they've been through a neurologic problem, or maybe they've had a loved one who has had neurologic issues or challenges, and our current guest is no stranger to this.
It is Thomas Zeller Jr. He is co-founder and editor of a really cool digital magazine called Undark and actually explores the intersection of science and society. He's actually been a reporter and columnist for the New York Times, for National Geographic Magazine, and he really delves into his own journey with cluster headaches in his first book, The Headache: The Science of a Most Confounding Affliction in a Search for Relief. So, I hope you enjoy listening to his experiences and you get an opportunity to check out his book.
Then, we also talk with our expert, Dr. Stephanie Nahas, who is a specialist in headache disorders, and she really describes, what is the phenomenon of cluster headaches and what she wants me to remind everyone is to have hope. Hold on, because the pain will end and there are really successful treatments.
Hello Brain & Life's Podcast audience. It's always great to be with you today and we have a special guest today. It is Tom Zeller Jr. He is co-founder and editor-in-chief for Undark, a non-profit digital magazine, exploring the intersection between society and science. I checked it out myself.
Previously, he was a reporter and columnist at the New York Times and editor-at-large for National Geographic Magazine, and a Knight Science Journalism fellow at MIT. Oh wow. My mother-in-law's going to love that. She loves MIT. He recently published his first book, The Headache: The Science of a Most Confounding Affliction and a Search for Relief. Today, he will share his own experiences with headaches and I particularly think we're going to talk about cluster headaches and also discuss his book and his writing. So, Tom, welcome to the Brain & Life Podcast.

Tom Zeller Jr.:
Thanks so much for having me, Katy. It's great to be here.

Dr. Peters:
Great. So, I gave a little short introduction. Do you mind telling us more about yourself and where you're joining us from?

Tom Zeller Jr.:
Sure. So yes, I'm Tom Zeller Jr. I am a long-time veteran journalist. I've covered a lot of things in my 30 years, lately, a lot of science. I did cover some climate change stuff when I was at the Times, but in latter years, I've been focusing more on health and medicine, somewhat at Undark.
I co-founded On Dark Magazine alongside Pulitzer Prize winner, Deb Blum, another great journalist in 2015, and that's what I do day in and day out. I run that magazine and I'm coming to you from Montana.

Dr. Peters:
Oh wow.

Tom Zeller Jr.:
Western part of Montana, south of Missoula, if that locates it for you.

Dr. Peters:
Oh yeah, I totally know that area. I have a big cohort of family out west. They're in Montana themselves, Idaho, California. So even though I have a southern accent, if you can tell but-

Tom Zeller Jr.:
Where in Montana?

Dr. Peters:
Montana. Well, Missoula and that's, yeah. And I also read Missoula, the book also...

Tom Zeller Jr.:
Uh-huh, yes.

Dr. Peters:
... which is great, a big fan of all of his work.

Tom Zeller Jr.:
Yes.

Dr. Peters:
I checked out your digital magazine Undark. Can you just tell us more about that and how it came about? Because I thought it was just so cool and I will say, our listeners should really check it out because there's so much content.

Tom Zeller Jr.:
Sure. So, Deb Blum, if you don't know her work, you should look her up, she took over as director of the Knight Science Journalism Program at MIT in 2015, and I had just finished a research fellowship there myself, and a mutual acquaintance put us in touch with each other. And when you put two journalists in a room and tell them there's a little bit of money to spend, they decide to launch a magazine. That's basically how it started.
We both have covered science and we were both aware that health medicine science had been seeing a lot of budget cuts after the 2008 financial disaster and following the rupturing of the business model of journalism in general, science was the first to go. So, we thought it would be a nice nonprofit mission to launch a publication that does what we think of as exemplary science journalism. It's non-ideological. We try to just follow the evidence where it leads and we give that journalism away for free.
So other publications will pick up our stuff and run it in their own publications, and you're more likely to see Undark in say, The Atlantic or in Scientific American or so a lot of our work ends up in those places, much more than you would probably stumble on to undark.org, although we welcome everyone to come see us there too. So yeah, that was sort of the mission.

Dr. Peters:
Well, it was easy to navigate website and I really liked just the articles that were just at the front page. Also, I checked out the one on tenure that I mentioned to you.

Tom Zeller Jr.:
Oh, great.

Dr. Peters:
I also looked at one on, you had some brain health articles from 2017, which we're very interested in here at our podcast. Just because you're in the space in media and also in science, one of the challenges that we see is misinformation. So, are you using Undark to dispel misinformation or just to really put the best science out there?

Tom Zeller Jr.:
Probably a little bit of both. I think we understand from sort of the sociological literature that it doesn't really help to bang people over the head with facts in some ways that we don't say, "Well, this is misinformation and here's the correct information, and if you don't believe it, there's something wrong with you." We find that that's probably the wrong approach. We don't like to scold, but we do take up contentious topics as part of our mission and just do our very best to follow the evidence where it leads.
And a lot of times, as you know as a scientist yourself, the place where you land is it's complicated. The answer to a lot of things is it's complicated. And I think part of Undark's mission is that we understand that we've sort of conditioned people to think that science is a destination, a place where of certainty, and very often it's not. It's about weighed risk and it's about sort of weighing different contingencies based on whatever evidence you have, even if you're somewhere short of certain. And so, we hope to write our stories in a way that trains people to become more comfortable with that ambiguity and follow the evidence in the most productive way.

Dr. Peters:
That's great. And so, in your journalism journey, and my uncle's a journalist, he does freelance journalism and he has his own set of skills and his own focus and just like I'm a neuro-oncologist to have my own focus. How did you find science journalism as your focus? How did that come to you?

Tom Zeller Jr.:
It was totally by accident, I have to say. It was not something that I sought out. I started at the times in my late 20s and I actually was doing a lot of graphical design at the time. I was plotting lovely data visualizations, charts and maps. That's sort of where I started out. And then, I graduated to writing about almost anything, politics. I was writing about business. I was on the technology desk. I guess, if there was a trajectory, it was that I ended up covering tech for a while for the Times.
And then, from there, it was a short jump to doing more science-y stuff. I also had a little bit of a, you mentioned it in the introduction, but I had a bit of a detour after about 10 years. I went to National Geographic Magazine for a couple of years and it was great. I loved it. I met my wife there. I mean, I wouldn't change a thing, but it was not for me, and I went back to the New York Times after that. And I think having come from National Geographic, I had the stink of science on me. So, they just put me to work covering science and the rest is history.

Dr. Peters:
Well, it's good history. And so now, we come to your first book, just congratulations. Is this true, this is your first book, correct?

Tom Zeller Jr.:
It's my first book. I co-edited a book on science journalism alongside Deb Blum and authored one of the chapters, but this is my first personal book. Yes.

Dr. Peters:
I love the title. It says, The Headache: The Science of the Most Confounding Affliction and a Search for Relief. First of all, what I like about the title, it is a confounding affliction. It is a challenge and it really takes talking to the patient and understanding what's happening to the patient, experience. Your next line, and I love this, a search for relief, I find that very helpful. So, tell us about the book and tell us about, I guess, what's going on with your headaches.

Tom Zeller Jr.:
Yeah, so I mean, I never thought that I would write a book about headaches of all things. I probably would've chosen almost, if you asked me before I signed the contract, what I would be writing about, I never would've said headaches. It was something that I kept very private and personal. I do have cluster headache, which is a very specific type of primary headache disorder, quite different from migraine and tension-type headache, which I think are the triumvirate of primary headache disorders.
But, when it came time to me really thinking about a book, I guess I realized that I'd been writing it most of my adult life in a way without knowing it, because I think probably a lot of your patients, such that you treat headache patients, spend time when they're not feeling miserable, just digging through literature and trying to figure out for themselves what's going on inside their own heads.
So yeah, I had folders and folders full of scientific papers going back to the '80s and '90s, just trying to sort out, A, what might be happening in my head, what does science know, what doesn't it know and what sort of treatments are out there or being developed. And that set me off on the journey that I take people through in the book.

Dr. Peters:
And when did you first start experiencing these cluster headaches?

Tom Zeller Jr.:
It was in my 20s, in my early 20s, which is fairly typical for a lot of cluster headache patients. And I should say, that I'm pushing 60 now, so they're starting to wane. I'm having longer and longer remissions, which is also somewhat common. We tend to age out of these things. Many people do if you're lucky, knock on wood. But yeah, so I've been experiencing them with some regularity for 30 years.

Dr. Peters:
And when did you first start seeing it? Did you go to see a neurologist? Did you see your primary care physician? How did you come to the diagnosis of cluster headaches?

Tom Zeller Jr.:
I mean, in my 20s before I started the Times, I did not have health insurance, so I wasn't seeing any doc.

Dr. Peters:
Oh my gosh.

Tom Zeller Jr.:
I was just sort of like, yeah, but I like to think that I was a curious and well-read person. So, I spent a lot of time in the library trying to self-diagnose, and I think you'd probably admit that with cluster headache, it's pretty easy to identify. I mean, the symptoms are so singular and so somewhat obvious once you know what you're looking for.
So, at the first instance, I self-diagnosed. I mean, when it first started happening, I thought, "My God, I'm having a seizure or something. I don't know what's happening." But by the time I finally got to a doctor, this would've been in my late 20s, I mean, I write about him in the book. He was my primary care physician in New York.
He was a bit of a character. He didn't really know headaches from anything else, but he was willing to listen and then I would bring literature in to show him, and he'd be like, "It sounds like you got cluster headaches." That's great. But then, he would continue to refer to them as migraine and conflate everything, but it didn't matter to me. He was willing to treat me.
He hoarded samples of Imitrex, sumatriptan injections that he would get from the pharma rep because they were still somewhat new and hard to get back then. So, he helped me in his own way. And from there, it was just trying to manage it with the constellation of not-so-great drugs that all of which, at that time, were designed for other disorders.
Same for migraine, I'm sure, taking anti-seizure meds, taking verapamil, taking prednisone and keeping the little blue injections, the acts behind the glass available as much as I could. That was my journey for a long time.

Dr. Peters:
That was your journey for a long time. Did you eventually see a neurologist or for treatment or did you?

Tom Zeller Jr.:
I did eventually see a neurologist. I saw actually a few neurologists. The hard part for me was getting on the waiting list to see one at the time because it took a very long time. And by the time I actually could make an appointment with a neurologist, cluster headaches being what they are, coming in clusters, it would often be gone by the time I could actually get in to see a neurologist.
So, he would often say, or she would say, "Well, you seem fine now. Come back when you have cluster headaches again." So, it was an imperfect model. But when I did get to see one, I mean, they were helpful, but to be fair, they didn't really provide anything in terms of treatment or recommendations that I wasn't already getting from my amateurish primary care physician, and that's not a knock on neurology, so much as it is at the time, there wasn't a lot you could do for a patient with cluster headache.
There were no innovative treatments. Sumatriptan was the big one. The triptan family of meds was sort of the big one coming out in the '90s, and then it was just the wilderness after that for many, many years until the CGRP drug started to emerge. So yeah, I realize I'm on a neurology podcast and I don't want to badmouth neurologist, I think there was a dearth of things that you can do for a person with headache.

Dr. Peters:
We definitely acknowledge that, and there is a challenge with two things. First of all, a dearth of knowledge, a dearth of how to better classify the headaches because I agree with you, a lot of times people would just be, if you're a young person with a headache, which you were, you're a young person in their 20s, they'd be like, "Oh, you just have a migraine."
And cluster headaches is a very unique disorder. It has neurologic symptoms that come with it. It's almost always very stereotyped for the individual. So, they have the same one over and over and over again. You sort of fit the bill as a young male patient in the 20s, did you ever try high flow oxygen?

Tom Zeller Jr.:
I tried high flow. My doctor at the time wanted to prescribe it, but insurance wouldn't cover it.

Dr. Peters:
Yeah, that sucks.

Tom Zeller Jr.:
And so, it was, which was a long battle. So, I did attempt it myself, and I write about this in the book by just obtaining welding oxygen...

Dr. Peters:
Oh my God.

Tom Zeller Jr.:
... from a nearby supplier and a mask. Yes. And of course, it did not help and it was not, I'm sure, the purest thing, but in desperation, you will try almost anything.
And for me, I should add that as long as I had the sumatriptan injections available to me, I had my out. There was never a time that they didn't work pretty good for me. I can remember just maybe two or three occasions where it was a really bad bout, and even an injection would not stop the thing. But for the most part, they worked for me and I hoard them. I mean, I still, to this day, have a shoebox full of unused blue injections that are probably very old and I will never get rid of them. I will never let you take them from me, just in case.

Dr. Peters:
But if you've had those experiences and you need to be relieved, I mean, I think that's really important. I know that, again, cluster headaches is a rare disorder than migraine. It is rare, much rarer than tension headache also. And so, when I have patients with cluster headaches, I remember my experiences with them because they again, were a lot you, very savvy, knew what the treatments were, knew what worked for them, and they were like, "I need my high flow oxygen ready to go."
And I remember having to get that and to get insurance clearance and it worked for two of my patients in particularly and I got pretty good at procuring the oxygen for them. And-

Tom Zeller Jr.:
How long ago were you able to... I mean, how far back were you first successfully able to get oxygen covered?

Dr. Peters:
That was a long time ago. That was in my residency. So, wow. And I've been doing this for 15 years, so I would say 2004.

Tom Zeller Jr.:
Okay. Wow, that's amazing because I know that the battle between the insurers over oxygen, in particular, continues to this day.

Dr. Peters:
Yeah. I wish that, well, that's a whole other podcast we could talk about with the insurance coverage. Now, when you were dealing with these headaches and you were also writing, and I guess, were you new at the New York Times then? Did it interfere with your work and how did you handle it?

Tom Zeller Jr.:
I talk a lot about this in the book too. So, I mean, it was important to me, and I think it's somewhat characteristic for a lot of headache sufferers, also for migraineurs that I spoke to too, and I interviewed, the book, I should say, is not just about me. I talked to a lot of patients from all walks of life with all kinds of flavors of headache.
But one sort of characteristic that comes through often enough in those conversations, and it was true for me, is that I didn't want people to know. I mean, I did not want, for whatever reason, and I talk a lot about the cultural baggage that gets attached to headache disorders and the sort of stigma that gets attached to them, but I think that I was attuned to that. So, I tried very hard to keep it from my employer from the Times. I worked from home whenever I could, so that especially when I was in a bout, I could have them privately and then, continue working.
I mean, one of the, I'd hate to say upsides of cluster headache is that they don't last. They usually are gone within an hour or two at most. You're going to get another one in a few hours, but you're more or less fine in between. You're just writhing on the floor while it's happening. So, unlike a migraine, which as you know, drives people into dark places for hours and sometimes even days at a time, I was able to work in between bouts.
Now, I would be bereft of sleep. I would be somewhat miserable, but I could carry on. I couldn't do some of the things that I may have wanted to. There might've been opportunities. I do remember opportunities opening up at the newspaper or elsewhere that I wanted, but I shrunk from because I was afraid that I wouldn't be able to perform in a way that was needed without sort of revealing my headache disorder. And so, I would hide.
So yeah, I was able to muddle through and I don't want anyone to think that I'm very happy. I've had a great career, but everyone who doesn't have a headache disorder should know that there's a real internal struggle going on in people who have these things. I mean, and they do like to keep it quiet, and I think that there are reasons for that that we could talk about. I mean, that have to do with stigma. There's a sense of disbelief, especially with migraine patients. It's like a little bit of malingering or something going on there.

Dr. Peters:
Well, I think what's really important, at least for us as practicing neurologists, that really headache specialists got recognized that there's this whole specialty that really is focused on this, and it's because of that sort of focus and focus also on pain, that the science really had an opportunity to grow. Thank you so much for joining us today, and I can't wait to continue this conversation in part two next week.

Tom Zeller Jr.:
Thank you, Katy. It was great to be here.

Dr. Correa:
Are there questions you have about living with and thriving with one of many neurologic conditions? We're excited to start taking your questions and feedback and sharing those responses here with you on the podcast. You can also email or record an audio message and send it to blpodcast@brainandlife.org.

Dr. Peters:
Hello Brain & Life Podcast audience. We are so excited that you're joining us today. Today, we're talking everything headaches, everything cluster headaches, and I'm Dr. Katy Peters, and I'm happy again to be hosting for you. I'm honored to introduce our medical expert, Dr. Stephanie Nahas, who will be discussing cluster headaches and other headache disorders.
Dr. Nahas is a professor of neurology at Thomas Jefferson University. She graduated from my grandfather's medical school, Rush, I believe, completed her residency and especially fellowship in headache medicine at Thomas Jefferson University Hospital. Later, she joined the faculty there and became the program director of the Headache Medicine Fellowship at the Jefferson Headache Center of Thomas Jefferson University.
What she's really known for is being a wonderful physician and a wonderful advocate for everybody in regards to headache medicine. She's gone to Headache on the Hill, which is an event that actually talks about advocacy in Washington DC for our headache patients. She also serves on the Board of Directors of the American Headache Society and is the former co-chair of and the current senior advisor to First Contact: Headache Education in Primary Care committee. Dr. Nahas, welcome to the Brain & Life Podcast.

Dr. Nahas:
Thank you so much for having me.

Dr. Peters:
Absolutely. And I just gave a brief introduction. I'm so excited about your advocacy and what you're doing for headache medicine, but can you tell us first, where are you joining us from and a little bit more about yourself?

Dr. Nahas:
Right now, I'm in Philadelphia, Pennsylvania. That's where I live and practice. It's where I'm originally from. I was born not far from Philadelphia in Abington, Pennsylvania. I'm interested to learn that your grandfather went to the same medical school I did. That's pretty cool.

Dr. Peters:
Yeah, I applied to Rush. They did not even give me an interview.

Dr. Nahas:
Oh, wow.

Dr. Peters:
Yeah, I know that he really likes it as a medical school, and I have so many good colleagues at Rush, including Jorie Fleisher, who's in their movement disorders program, but you had headache medicine. What is involved in a headache medicine specialty and who goes into it?

Dr. Nahas:
A lot of folks are surprised to learn that there's such a thing as headache centers and headache medicine specialists and headache fellowship training programs. I mean, what? In fact, when I was a Rush medical student and looking for neurology residency programs, I discovered that there's such a thing as headache medicine when I came to Thomas Jefferson for my interview, and I remember being quite impressed meeting Dr. Silberstein at that time.
Fast forward to when I'm actually a resident there, I got assigned to him to be my supervising attending for my continuity clinic, and he, right from the get-go, was trying to convince me to do headache medicine. He wanted to turn me into his little project, and it took a couple of years of really leaning on me to actually realize what a fulfilling career headache medicine is. Because, like you and many other neurologists, we got here through our fascination with the brain and the nervous system, how it works, how it makes us human, how the senses work, how language works, et cetera.
So naturally, I was most interested in things like movement disorders and epilepsy and cognitive disorders, stroke, real neurology. I had no idea that studying headache medicine, not only gave us a window into an intricate view of how the nervous system works and integrates with the body, but also psychology and humanity. So, while I didn't choose the headache life, the headache life chose me, and I'm blessed for it.

Dr. Peters:
I will say, that when I trained in medical school, one of my preceptors that I got to go to clinic with was a headache medicine neurologist, and I learned so much from her. Part of it is that human, humanity side because it can be sort of a challenging disorder to diagnose and to also treat. We're here today to discuss one type of headache syndrome. We'll discuss other headaches too, but can you tell us more about you being an expert, what are cluster headaches?

Dr. Nahas:
Cluster headaches are diabolical. They're more than just headaches. In fact, that name cluster headache doesn't even come close to capturing the terrible degree of suffering that folks who live with this disease have to endure day after day, week after week, month after month, even when they're not experiencing attacks, which thankfully, is most of the time, they're worried about when the next attack could be.
Imagine if some little miniature demon, devil, gremlin, whatever word you want to put on it, somehow got into your head or onto your head, and took a burning hot poker and was jabbing it into your eyeball or from within your skull out of your eyeball or against your skull, inside and out, over and over repeatedly. And at the same time, your nose is running on that side. Your eye is watering profusely. It's squeezing itself shut, so you can't see.
It's hard to talk because your head's full of snot. You look like a mess and you're screaming your head off because it is literally the worst pain that humans can experience. Many folks think that childbirth or a gunshot wound or being stabbed, those are among the most painful experiences in the world, and they are truly painful. But there was once a study interviewing patients who had endured various kinds of severe pain like the ones I mentioned, and kidney stones and a few others, and they had them rate how bad that pain was.
There were some individuals who had experienced cluster headache attacks in that study, and who also happened to have experienced other types of pain. Every single individual with cluster headache, that was the most intense pain they had ever experienced, including people who had been shot, who had been stabbed, who had given birth without medications. So, it's really bad.
Now, thankfully, the attacks are usually short, but can you imagine even enduring that for 10 or 15 seconds? Try 15 minutes to 3 hours repeatedly throughout the day. Many individuals who have this condition will have attacks in the middle of the night, first thing in the morning, middle of the afternoon, and maybe some other times of day. Sometimes they're predictable, sometimes not. Certain things tend to be triggers for them, like going to sleep, having an alcoholic beverage. Certain other things in the environment can bring them on or they can be completely unpredictable.
And for the lucky person with episodic cluster headache, meaning most of the time, they're not even in a cycle having these headaches. This will go on for, oh, just a matter of a few weeks or a few months. Yeah, they're the lucky ones. Can you imagine? But there's a subset of individuals who live with this condition that endure this day in and day out. We call that chronic cluster headache. It never stops.
The cyclical nature of it, by its nature, it tends to come for a certain period of time and then fade away. There's often a lead-in period to it where there might be like a miniature attack or a shadow of an attack for a few days before the whole cycle, or the bout ramps up, and then it's day after day of these repeated attacks, almost like clockwork, completely derailing that person's life. How do you plan around that? And then, when it finally ends and peters out, that's great until the next time the cycle comes.
And many folks still have a time of the year, like a particular season when they're prone to entering these cycles or these cycles might be years apart, and the ones who can predict it and are in touch with their bodies and have a good doctor who's given them a diagnosis and a good management plan, will be able to mitigate the dire effects of entering into a cluster bout, not eliminate necessarily, but make it a little bit less of a torture because there are treatments that we can institute as the cycle is beginning during the cycle, as well as when it's ending to help minimize the suffering. But it's difficult, if not impossible to eliminate the suffering for any particular individual.

Dr. Peters:
It sounds absolutely horrible. So, I just want to say I'm so sorry for all those patients that are suffering out there. How common is this headache syndrome?

Dr. Nahas:
It's more common than a lot of people realize. Most people have heard of multiple sclerosis. Would you agree?

Dr. Peters:
Oh yeah.

Dr. Nahas:
It's about as common as multiple sclerosis, but it's not nearly as visible. The only time cluster headache is visible is when the individual who lives with it, decides to make it visible, because in the throes of an attack, it totally transforms that person. I mean, I've heard some individuals who have this condition referred to it as the beast, like the beast within. And if you've ever seen somebody having a cluster headache attack, they're unrecognizable even during their cycles. They're much different people than when they're out of cycle. Their whole comportment and demeanor changes, even their physical appearance changes.
I mean, it stands to reason in somebody who's suffering with being figuratively stabbed in the eye with a hot poker multiple times a day, day in and day out, and can't sleep. I mean, they're going to look pretty haggard and perhaps depressed and very tired, sleepless. But it truly changes something about that whole person's psychology and their outlook on life and where their place is on this planet.
I can't hardly do it justice because I've never experienced a cluster attack, but I recognize and give it respect that it's called suicide headache for a reason, because that's one of the things that we fear the most with this condition is that someone will take the ultimate way out and end their life rather than continuing to endure these repeated attacks on their head.

Dr. Peters:
But we have treatments, so.

Dr. Nahas:
We do have treatments. We do have treatments. So back to your original question, how common is it? It's about as common as MS, but it's not visible. And again, the person who has cluster headache, and most of them are the episodic flavor, so imagine you have these attacks, you don't know what they are. You might go to the emergency department, but you're probably not going to be having an attack while you're there. You might make an appointment with your doctor to discuss it, but you're not probably going to have an attack when you're there.
And no matter who you see, they may not recognize this for what it is because headache education in general, as you know, doesn't get the service and time that it deserves in medical school and in training. And now, when you take one of the less common headache syndromes, that's harder to find in the real world, although it really shouldn't be, if you haven't encountered it, it's going to be difficult for you to recognize what it is.
And so, this is one of the reasons that it takes so long for someone to get diagnosed. Furthermore, let's say you have a cycle of these that's going to go on for a few weeks and you call your doctor in the beginning of it and you say, "I don't know what's going on." It's your primary doctor or nurse practitioner, clinician, let's say. And they say, "Oh, I think this is cluster headache. You should go see a neurologist."
We all know how difficult it can be to get in to see a neurologist. By the time the neurologist's appointment comes around four or five months later, well, the cycle is gone. That individual might think, "Oh, well, this will never happen again. I'm just not going to keep the appointment. Why should I go when I'm not having symptoms?" And so, wash, rinse, and repeat this cycle, you can see why it can take a long time, even if there's a clinician that suspects this is what the diagnosis is, to get that diagnosis confirmed and then to get appropriate treatment.

Dr. Peters:
And are there risk factors for developing cluster headaches? Are there certain types of people that are more likely to develop this?

Dr. Nahas:
Cluster headache has been described for centuries. In the modern era, the way it's taught is that it more often affects men than women in contrast to migraine, which more often affects women than men. And this is true, but some have taken it to an extreme. And this myth still is pervasive in training and education that women can't have cluster headache, which is totally not true.
But I've met so many women with cluster headache who were told to their face by a clinician they had up until that time respected that they couldn't possibly have cluster headache because they were a woman. So this is just one of the preposterous myths that still persists. And we still have a lot to learn about cluster headache, of course, but a few other things we do know about it in terms of risk factors.
So being a boy or a man tends to be, you could consider that a risk factor because it more often affects boys and men, and yes, this can start in childhood. There've been children as young as two or three years old that have been diagnosed with cluster headache. Head trauma is reported to be a risk factor for developing cluster headache later in life. Smoking or even secondhand cigarette smoke exposure is reported to be associated with the development of cluster headache in the future. Those are some of the strongest common threats that we see in the real world.

Dr. Peters:
Are there any biomarkers that are being looked at to follow or a way to diagnose it, or is there any blood tests you can do?

Dr. Nahas:
That's a Holy Grail in all of headache medicine. We don't really have good diagnostic tests to say, yes, this is cluster headache, or yes, this is migraine, or yes, this is XY or Z, other diagnosis. We have great tests to say it's not something else. That's not a headache. That's why we're excluding secondary causes of headache.
There are secondary causes of cluster-like headache syndromes though, and this actually happens more often in this family of disorders, the trigeminal autonomic cephalalgias of which cluster headache is one member of this spectrum of disorders.
Secondary causes to these disorders are found eventually in a much greater proportion of this population than they are for, say, migraine or tension-type headache. So, there's a lot of reasons that alarm bells need to go up at the first suspicion of cluster headache or something in that family of diseases.

Dr. Peters:
You mentioned, I guess, some tearing of the eye and maybe some droopiness of the face, can you describe again what happens to their face and their eye?

Dr. Nahas:
Yeah. We have criteria for all headache disorders that follow a typical format. A certain number of lifetime attacks is usually the first line. The next line is usually how long these attacks last. And then, there are descriptors of the pain features of the syndrome and the associated or non-pain features of the syndrome, followed by maybe a line of how often they occur. And then finally, the last disclaimer, not attributable to some other disorder like a secondary headache or a better diagnosis.
So, when it comes to cluster headache, the attacks are unilateral, typically located in the eye, the forehead or the temple or some combination, sometimes extending down into the face, sometimes extending to the whole half of the head. But the cardinal location is periorbital, frontal and temporal, severe to very severe, if not excruciating.
The quality is often described as sharp, poking, burning, lancinating different than the throbbing or the pressure-like pain of say migraine or the pressure of tension-type headaches. The type of pain is distinct and they lasts 15 minutes to three hours by definition, on average about 45 minutes to 60 minutes. So those with the shorter attacks, again, are the so-called lucky ones.
And then, the associated features of cluster headache include any number of what we call autonomic symptoms, and these can include tearing of the eye, reddening of the eye, drooping of the eyelid, swelling of the eyelid, nasal congestion, or rhinorrhea, all ipsilateral to the pain or on the same side as the pain.

Dr. Peters:
Well, Dr. Nahas, I would say thank you for educating us and thank you for imparting all of your wisdom on cluster headaches. And again, thank you very much to all of our listeners.

Dr. Nahas:
Thank you for humoring me as I tend to just go on and on and on and on about topics that I carry a great passion for.

Dr. Peters:
Make sure to come back next week to hear more from Elizabeth and Dr. Lipkin, discuss research and what the future looks like for people living with this condition.

Dr. Correa:
Thank you again for joining us today on the Brain & Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes.

Dr. Peters:
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Dr. Correa:
You could also find that information in our show notes, and you can follow Katy and me and the Brain & Life Magazine on any of your preferred social media channels. We are your hosts, Dr. Daniel Correa, connecting with you from New York City and online at Neuro Dr. Correa.

Dr. Peters:
And Dr. Katy Peters joining you from Durham, North Carolina and online at Katy Peters MD PhD.

Dr. Correa:
Most importantly, thank you and all of our community members that trust us with their health and everyone living with neurologic conditions.

Dr. Peters:
We hope together we can take steps to better brain health and each thrive with our own abilities every day.

Dr. Correa:
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Exploring the Reality of Cluster Headaches with Tom Zeller Jr.: Part One

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