Why Are So Many People Plagued by Headaches?

There is so much scientists and doctors still don't know about why humans get chronic headaches, and the best way to treat them. Author and science journalist Tom Zeller Jr. discusses his new book, The Headache: The Science of a Most Confounding Affliction―and a Search for Relief. Listeners call in to share their own experiences with headaches.

Alison Stewart: This is All Of It. I'm Alison Stewart live from the WNYC studios in Soho. Thank you for spending part of your day with us. I'm really grateful that you're here. On today's show, the stars of the darkly funny musical Heathers joins us in Studio. UK soul artist Omar will be here for a listening party for his latest album titled Brighter The Days. Plus, we'll talk with food writers from Grub Street about the best food that they have eaten so far this year, and you should call in and share what's on your list. That is our plan, so let's get this started. [music]

Alison Stewart: Headaches are one of the most common medical ailments, and yet they remain poorly understood. There are lots of different kinds of headaches that might spring up for different reasons, and they're not always predictable, which makes them hard for researchers to study. Still, when compared with other afflictions, migraines, cluster headaches and other members of this category are listed among the most harmful to public health according to one common metric.

If you're one of the 3 billion people around the world with headache disorders, you might want some answers. A new book called The Headache: The Science of a Most Confounding Affliction―and a Search for Relief is by Tom Zeller Jr., a journalist and editor who has known a bit about dealing with a particular disorder known as cluster headaches for many years. In the book, he blends his personal experience with historical research and scientific reporting to explain the latest on headache research and why it still can't answer many of the essential questions that stand in the way of treatment. Tom Zeller, thank you so much for joining us.

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

Alison Stewart: One of the reasons you wrote the book is your own experience with cluster headaches. What are cluster headaches?

Tom Zeller: Cluster headaches, probably unfamiliar to a lot of listeners, they afflict only less than 1% of the population. They're different from migraines. The pain comes on very, very quickly. You don't usually get any warning signs and it doesn't work up, it shoots up to 11, as you might say, almost immediately. The pain is debilitating. You can't do anything when a cluster headache is firing at its peak.

I liken the intensity of it to having your hand on a hot burner but not being able to take it off. It's at that level of intensity for about an hour, maybe two, if you can't medicate it in any way. Then it vanishes and you're perfectly back to normal, but then it might come back again another two or three hours later. This will happen every few hours throughout the day for a couple months out of the year. That's where the name comes from, it happens in a cluster around the year, and then they go away, and you might have many months or even years in between attacks. Very different from migraines, but probably very similar physiology happening in there.

Alison Stewart: Well, can you explain what some of the other headaches are for the sake of this discussion?

Tom Zeller: Yes. Migraine is probably the most familiar of the-- They call them primary headache disorders. These are disorders that are distinct from the headaches that we all get if you skipped lunch or you are a bit dehydrated, but the headache itself is the disorder. It's the salient factor of the disease. Migraine is probably the most familiar of them. Cluster is another.

Tensioned hype headaches are probably the most familiar. These are recurring headaches, but they're often more treatable with over-the-counter medications or maybe some lifestyle changes. They tend to be less debilitating and then they go down. There's a whole gamut of other-- very more rare primary disorders from trigeminal neuralgia and lots of other ones with fancy names, but those are the main categories and probably the ones that anyone who has a headache is probably most familiar with.

Alison Stewart: In your book, you write, "This is not a textbook. I am not a scientist nor an academic." What did you hope to accomplish by writing this book?

Tom Zeller: It's funny, I don't think I ever wanted to write about headaches. It never occurred to me in all my life as a journalist. I covered a lot of other things, but when it came down to writing a book, part of it was, what do I know about? Strangely, this is something that I know rather intimately.

I know that in part because I was always struck when these first came out in my 20s. I'm in my 50s now, but over the decades, I would get online and I would look at the literature, I would read the scientific literature. I cover science as a journalist, so it was familiar to me. I was always struck at how little was actually known. It seemed to me that headaches are common enough and even headache disorders like migraine or cluster headaches are common enough that it surprised me that there wasn't more known about this. The journalist in me thought immediately, "Well, let's find out why."

Alison Stewart: You're a writer as well as being a journalist, and you have to put into experience what pain is, what it feels like. You go about quoting writers like Virginia Woolf. What is it about headaches that are difficult to describe to someone?

Tom Zeller: Well, on the one hand, I think it's difficult to describe in part because we all think we know what it is. Well, I'm sure there are people who don't, but most people do know what it feels like to have a pain in the head if you're, say, dehydrated, or as I mentioned, you skipped lunch, or maybe you had one too many cocktails the night before and you get a dull ache all around the head. That's a different animal.

It's unfortunate in a way that we just colloquially use this word "headache" to refer to a lot of different things that run the gamut from what I just described to truly debilitating pain disorders that prevent a person from fully participating in the culture and in the economy and really can be quite debilitating. In some ways, I think that pain is hard to describe to people because we use the same word for both.

I also think that there's something rather different about pain that's happening inside the head. I try to get at that versus-- I describe in the book that I've had ankle surgery, for instance. I'm a runner and I busted a couple tendons. The surgery was quite painful, the recovery was quite painful, but it did always have this geographic distance from me. It was down there, but once the pain starts to move up into your head and we're talking severe pain, pain that feels like an emergency inside the nub of the self, it becomes hard to distinguish like, "Where does the pain begin and I end?" It's all mixed up in there.

I feel like there's a different aspect to that, particularly when you're talking about really powerful headache pain disorders.

Alison Stewart: We're talking about the new book The Headache: The Science of a Most Confounding Affliction―and a Search for Relief with its author, journalist Tom Zeller. Listeners, if you'd like to get in on this conversation, if you'd like to share your experiences with chronic headaches or your experience trying to get relief from them, our lines are open, 212-433 WNYC.

You may call in or text or you can hit us up on our socials, @allofitwnyc. Perhaps you can share what's worked for you. Our phone number is 212-433-9692, 212-433 WNYC.

There's a section of your book where you talk about the attempts to quantify the impact of headaches as a public health issue. One of the most common metrics used is called the disability-adjusted life years. First of all, what does that mean? Why is it important to public health officials to compare health conditions that way?

Tom Zeller: It's a metric used to collapse the distinction between, say, a disorder like headaches and accidents that injure or kill people and other diseases like cancer or AIDS, whatever it is. It's a way of quantifying diseases that both shorten lives and also rob people of productive years. It allows economists to put all these things on the same plot and say, "Okay, well, how does the burden of cancer compared to the burden of, say, migraine, or to the burden of gout, or to the burden of sciatica, or to the burden of car accidents, or to the burden of gunshots?"

It's a way of comparing all these things and ideally giving funders and scientists some idea of where the greatest needs are or where money maybe should be spent. It has its critics, but it is a interesting way to look at diseases and accidents and the human condition.

Alison Stewart: You may ask somebody, "How many disability-adjusted life years have I lost due to headaches?"

Tom Zeller: Yes, that's one way to think about it. It's a little overly simplistic, but it definitely aims to say, "How often is a person suffering from migraine behind closed doors, can't work, has their head under a pillow, and is basically, functionally disabled for as long as that headache is grinding on?" It doesn't kill them, of course, but it is robbing time from them leading a productive and healthy life. If you were to add up all those hours and all those days over the course of a person's lifetime, what would that look like? That's what the DALY tries to get at.

Alison Stewart: Doctors are not always perfect. They have good reasons to be skeptical, to be thorough, to be evidence-based, but it seems like with headaches, it requires them to believe their patient basically.

Tom Zeller: Go ahead.

Alison Stewart: No, I was going to ask, does that create difficulty between patient and doctor, especially the way that doctors' appointments go these days?

Tom Zeller: It can, yes. I think headache has a a special place in there. One reason for that, and I do address this in the book, is that particularly with migraine, this disorder affects women over men by a ratio of something like 3:1. It's much more prevalent in women. When you have a disease that has no biomarkers, there's no clear test to say, "Oh, okay, yes, you have migraine, you've got the biomarker for migraine, or you've got the biomarker for cluster headache," when you don't have that, and when you have a disease that's particularly prominent in women.

We all know that women's health has received short shrift over the decades. It was very easy and very common, I think, for doctors to attribute it to either psychogenic or psychosomatic origin or-- we all know the word "hysteria", or, "Women are just too stressed out." It really did suffer over the decades from being trivialized and over simplified in part because it's a hard nut to crack. It's very difficult to discern what it is that's going wrong in there. There were a lot of [unintelligible 00:12:30] explanations for that. I talked to a lot of women in this book who, even today, still get a residue of that from their doctors.

Now, I think times have changed and I don't want to besmirch a profession saying that they're all being dismissed, but that does operate in the clinician's office. I do think that we're still coming out from under that.

Alison Stewart: Tom, let's take some calls. Let's talk to Meryl, who's calling in from Port Washington. Hi, Meryl. Thank you for making the time to call All Of It today.

Meryl: Hi. Mine started only a few years ago, but it was dismissed at first as just, I don't know, maybe anxiety or whatever. Then it went to-- I had migraines and was given Qulipta, which didn't work. Then I was given shots. That didn't work. Finally some other neurologist decided that I had venous insufficiency through my arteries in my neck, gave me surgery to which I really didn't have that either.

My husband gallantly found me, through friends, a very qualified neurologist who diagnosed me with serotonin levels that might be too low because what I feel is not a traditional headache, but more of head pressure. it feels like I'm wearing a headband around my head all the time. that I've been doing for the last year and a half, and that has seemed to help it somewhat. Depending on how I eat as well, tends to make me feel more comfortable with it. Today I feel good, but depending on weather, sometimes it feels really bad again.

Alison Stewart: Meryl, thank you so much for sharing your story. Let's talk to Robin, who's calling in from Soho. Hey, Robin, thank you so much for calling All Of It. You're on the air.

Robin: Oh, thank you so much. I really appreciate this conversation. I have been suffering with migraines since my 20s, I think. I thought it was hormone-related. I'm now over 65, and so all these years I've gone through really bad migraines with throwing up and being nauseous, sometimes nine days in a row of migraines.

Then I discovered Imitrex when that first came out, and it really helped. I've been taking that for a while until my doctor said, "Well, I'm nervous about you being on sumatriptan now because there is a possibility of strokes." Scared me to death, put me on five different medications. One of them made me depressed, suicidally depressed. One of them didn't work at all. All of them had difficult side effects.

Qulipta has really helped, but there's a side effect with that which is really uncomfortable. I'm at a loss. I just feel like this is one area that medicine and doctors are not able to really come up with something that works for all of us. I know we all have different kinds of headaches, but thanks for your book. I'm going to read it.

Tom Zeller: Thank you.

Alison Stewart: Tom, I'd like you to respond.

Tom Zeller: What's being described here is so common among headache sufferers, and that is the level of polypharmacy, which is the number of drugs a person is on at any given time, among headache patients is akin and sometimes exceeds that of geriatric populations where it's much more common to be taking multiple medications. The gauntlet that headache sufferers have to go through in order to find something that works, if they're lucky enough to find something that works, is really prominent. The stories are incredibly common.

One reason for that, I should point out, is that for all of headache history, there really has never been a medication developed by the pharmaceutical industry or by institutions that was designed to treat headache for most of history. It was always a hand-me-down drug that was developed for, say, depression or developed for epileptic seizures or developed for other conditions that seem to have maybe some effect on alleviating the headaches, so they would prescribe that to a headache patient just like your caller.

They always came with some really nasty side effects that were unfortunate and maybe alleviated the headache sometimes, but often presented with other side effects that were less than ideal. It really is only in 2018 that drugs entered the market that really were designed specifically for migraine and for cluster headache. I would think if your listener hasn't tried that, if the caller hasn't tried those, they're CGRP medications is what they're called, I would highly suggest talking to a doctor about those.

Alison Stewart: We're talking about the new book, The Headache: The Science of a Most Confounding Affliction―and a Search for Relief. Its author is Tom Zeller. He's our guest. We'll have more of your texts and calls and more about what we know about headaches after a quick break.

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Alison Stewart: You're listening to All Of It on WNYC. I'm Alison Stewart. My guest is journalist Tom Zeller. He's written a book called The Headache: The Science of a Most Confounding Affliction―and a Search for Relief. You go into the history of how medical professionals addressed headaches from ancient Egypt through Charles Darwin's father, through today. Knowing now what you know, was there anything that either surprised you or really made sense to you about how we treat headaches?

Tom Zeller: I think both are true. That's a great question. I think both are true. I went in rather surprised that we knew so little. If I started to uncover the neuroscience, it becomes a little more reasonable that, let's face it, the central nervous system in particular, our brains are still rather mysterious organs. We don't even really fully understand what normal function might look like, much less abnormal function, and it's hard to study.

That said, it was surprising for me to learn just how orphaned migraine, in particular, and other headache disorders are compared to other diseases in terms of what we're willing to fund and what we're willing to research. I was rather surprised to learn that despite having a rather large burden on people's lives, according to that DALY metric that we talked about.

Migraine in particular, is very underfunded. It gets very little money from the National Institutes of Health for basic research into figuring out why it happens and how perhaps we could cure it, and that was surprising to me. Given the huge economic toll that migraines take, you would think that there would be more interest in getting to the bottom of it. I do think that's changing, but I was surprised by that.

Alison Stewart: Let's talk to Ben, who's calling in from Brooklyn. Ben, you're on the air.

Ben: Hi, delighted to be on the air. Thank you for shining some light on this issue. I have been struggling against very difficult-to-diagnose migraines for the past 15 years. I remember sitting on the floor when I was a senior in high school and feeling this crazy electric sensation overtake me and then being dizzy for about a week and half with what I later learned was something called a vestibular migraine that impacts your inner ear. Who knew? It took a decade to figure out. Even our understanding now of it is tentative.

What I wanted to ask was about, if you're aware of any relation that histamine has in migraines. One of the things that was surprising was that I started taking Zyrtec and my migraine frequency dropped in half, and that was just stunning to me. And I still don't have a perfect answer why that is.

Alison Stewart: That came up in your book, yes?

Tom Zeller: It did come up in the book, and it's a great question. I will say this, histamine definitely is a known trigger of headache in a lot of people. If you're prone to getting migraines, if you're prone to getting even clusters, in an experimental setting, histamine is known to trigger those bouts fairly reliably. Not in everyone, but in a high percentage of volunteers and studies, histamine will trigger those headaches.

There is a working theory that's been around for decades that if you slowly desensitize someone's system to histamine by giving them small infusions that are titrated upward over time, you might be able to cure their headaches. There are clinics that will provide that treatment even now. Not everyone buys this. There are lots of other compounds and substances that we can use to trigger a headache, but that they don't really necessarily lead to a cure. Nitroglycerin is one example. We can almost always bring on a headache and a migraine in a person prone to this.

With that said, I don't think it's unusual to think that histamine may be playing some role in some people's headaches. If it is working for you, enough said. People usually have to choose their own adventure when they're trying to treat their own headaches. If taking Zyrtec reduces your headache, then by all means, keep taking it.

Alison Stewart: Let's talk to Cheryl in The Berkshires. Hi, Cheryl. Thanks for calling All Of It. We got a lot of questions about what you have a question about.

Cheryl: Oh, good. Well, thank you for having me on today. It's actually really great to hear this subject covered. In fact, my husband and I were talking about it the other day. I've been suffering from a lot of the headaches that you've described since the age of 10. I'm now 50 plus. A hack I did want to share for those who get nauseous is to use motion sickness medication right when a bad headache comes on, because I found that has helped me a lot.

My question is, one of the headaches that I've been suffering from actually during this summer, many mornings I'll wake up with a headache which, I think, is affected or created by the barometric pressure. I've noticed that for many years now, but it's been especially, I think, daunting during the summer. Have you come across this?

Tom Zeller: I definitely have come across anecdotal evidence and some clinical evidence that environmental conditions can bring on attacks, whether it's barometric pressure. Even something like elevation can affect headache attacks. The problem is that it's certainly a multifactorial disease, so it's really hard to say even if the barometric pressure is affecting your headache or it's a trigger for your headache, that it would be a trigger for everyone else. Everyone's bodies are so different. I definitely have heard that this kind of thing can happen.

One other thing I'll note is that with cluster headaches and possibly with migraine too, the hypothalamus, which is the center of our circadian rhythm, it's the biological clock inside our brains, is definitely implicated in both of these headache disorders. We're not sure exactly why, but it definitely lights up when people are experiencing these things. That organ, that part of our brain, is acutely attuned to our environments in all kinds of ways. It's almost certain that all of that is playing a role. We just don't know who the primary actors are and who the extras are.

Alison Stewart: We're talking about the new book, The Headache: The Science of a Most Confounding Affliction―and a Search for Relief with its author, journalist Tom Zeller. One of the researchers that you spotlight in the book is a New Yorker named Dr. Harold Wolff. In the middle of the 20th century, he was one of the first to establish that migraines had a a hereditary element. He was also interested in the mind and the body and in the environment when it to nervous system disorders. What did he study that you found interesting?

Tom Zeller: Well, it's interesting. There's no question. I think there are awards even in the study of headache science that are named after Harold Wolff. He's the founding father of headache science in a lot of people's estimation, and he's celebrated in that regard.

There's a movement now, which surprised me to learn, that looks at his fascination in particular with the vasculature of the brain, the blood flow within the brain as the probable culprit in most headache disorders. I think that a lot of us have inherited that sense. If we think about, what is a headache, what's happening in the head, we all reflexively think, "Well, there must be blood flowing up in there too much. It's like the blood vessels are expanding and they're pressing against a nerve or something."

Harold Wolff, I think, also believed this in some way and helped perpetuate this notion. We're now learning that it's almost certainly not true and possibly that the blood vessels may not be involved at all. What surprised me most is that this figure who's such a giant in headache science actually may have let us down what one of the other scientists I spoke to, a contemporary science, described as a blind alley, a wrong direction.

Alison Stewart: Let's talk to Andrea calling in from Brooklyn. Hi, Andrea. Thank you so much for making the time to call All Of It.

Andrea: Well, thank you for taking my call in. It's Andrea.

Alison Stewart: Andrea.

Andrea: I'm the girl who voted for Brian Lehrer three times for mayor, just saying. Had to say it out loud. Your person took that information. Actually, she said she would tell him. My mom has Alzheimer's and she is on Qulipta. She's 88. She's on Qulipta, Ubrelvy. She's done three months of Botox, and still we can't figure it out. When I saw my neuro recently, which is now her neuro, I said, "What do we do for her?" She said, "That's it. That's all we have."

Alison Stewart: You bring an interesting question, Andrea. Why have we hit a wall when it comes to medication, Tom?

Tom Zeller: You can look at it two ways. Some would argue that we haven't hit a wall, that in fact, we're in an era of great flowering. These new CGRP medications that I mentioned came out in 2018, and these are pretty sophisticated drugs. Your caller mentioned one of them, which clearly didn't work for her mother, but they are all designed to block a neurotransmitter called CGRP, which, almost certainly, it definitely is in elevated levels when someone is having a headache. The theory was that if we block this either from being expressed or from the receptor taking it up, we might be able to interrupt headaches.

For a lot of people, it has been incredibly life changing. Not everyone. In fact, one of the things I learned in the book is that if a drug helps half the people half the time, it's a winner, which to me is striking because for a patient, it's essentially a coin toss. For whom it does work, it's incredibly effective. Now, we haven't evolved beyond that yet. There are a lot of clinics and scientists who are now studying other possible neurotransmitters that we might be able to block, and they're working their way through clinical trial now.

I wouldn't say necessarily that we've hit a wall. The other way of looking at it is that it's taken us a long time, and probably too long, given the burden of these disorders, to really start taking them seriously scientifically. I feel the sense of frustration that your caller has.

Alison Stewart: How are you doing? What do you do when you get a headache?

Tom Zeller: Me?

Alison Stewart: Yes.

Tom Zeller: I'm doing okay. One thing that does happen a lot with both migraineurs and cluster headache sufferers is that as they age, they frequently diminish. In women, it's often a hormonal thing. You can predict that once they go through menopause, many of them will see their headaches dissipate. I think that the same is happening in men. There's changes in testosterone levels, there's changes in metabolism. I am getting the headaches less frequently than I used to. It's actually been, I think, a year and a half, two years maybe, since I've had a cycle when they used to come twice a year. I'm doing all right. When I get them, I take the CGRP injections and hope for the best.

Alison Stewart: The name of the book is The Headache: The Science of a Most Confounding Affliction―and a Search for Relief. It is by Tom Zeller. Tom, thank you for joining us and taking our listeners' questions and calls.

Tom Zeller: It was really great, Alison. Thanks for having me on.