When Headaches Are Ruining Your Life, Where Can You Turn?

FLORA LICHTMAN: Hey, it’s Flora Lichtman. You’re listening to Science Friday.

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Today in the podcast, headaches are so common. But how well do we understand them?

TOM ZELLER JR.: It’s an invisible disorder. There’s no biomarker, there’s no test, there’s no scan you can do that will prove that I have this thing. And so a lot of it is just a high art of convincing someone.

FLORA LICHTMAN: If you’ve ever had a headache– and you probably have– you know it is not pleasant. But maybe you pop some ibuprofen, and it goes away. But for many people, it’s not so simple. A headache isn’t just a one-off annoyance. It’s an experience you organize your life around, because these headaches could last for days, they’re so painful you can barely withstand them, and they’re largely untreatable.

That was the experience of my next guest, who went on a reporting journey to solve his own headache disorder, Tom Zeller Jr., editor-in-chief of Undark and author of the new book The Headache: The Science of a Most Confounding Affliction and a Search for Relief. He’s based in Montana. Tom, welcome to Science Friday.

TOM ZELLER JR.: It’s great to be here, Flora. Thanks for having me.

FLORA LICHTMAN: Let’s start with your personal story. When did the headache start for you?

TOM ZELLER JR.: Yeah. For me, they started in my early 20s, which is fairly typical for the flavor of headache that I get, the headache disorder I have, which is called cluster headache, and sort of tormented me for the next roughly 30 years. They are starting to dissipate as I get older, but it’s been a journey.

FLORA LICHTMAN: You write about in the book how hard it is to describe your own pain so that other people will understand it, but I’m going to ask you to do it again. What does it feel like for you?

TOM ZELLER JR.: Yeah. So, I mean, cluster headache, as a disorder, is interesting. It’s sometimes described even in the scientific literature as perhaps the most severe pain syndrome known to human beings. I think these sorts of comparisons are hard to verify. But I can say it’s by far the most painful thing I ever experienced.

The pain comes on incredibly quickly, within seconds, without really much warning, and ratchets up to a peak that there are times in my life where I’ve thought there couldn’t be anything that hurts this bad beyond this. So I liken the intensity of pain that you might get if you had your hand on a hot stove, on a hot burner, but you can’t take it off for an hour or two.

FLORA LICHTMAN: Oh, man.

TOM ZELLER JR.: So every episode is kind of an emergency. Unlike a lot of headache disorders, someone with cluster cannot sit still. You cannot speak. You’re often writhing on the ground. It’s not a very lovely thing to witness or experience, I have to say.

FLORA LICHTMAN: And it must be just very difficult to have these sort of unpredictable cluster headaches when you’re working or you’re at a workplace.

TOM ZELLER JR.: Yeah. Yeah. And I think that that’s characteristic of most people with a headache disorder, is you spend a lot of time, an inordinate amount of time, arranging your life in order to endure these things and still remain as productive as possible.

I’ll also say that cluster headache, unlike disorders that are probably more familiar to listeners like migraine, come and go at a much higher frequency. So no individual attack tends to last more than an hour or two. So the headache comes, knocks you around, and then leaves. It’s guaranteed to come back again a few hours later or later in the day somewhere. You don’t when.

But you’re kind of cured between these headaches, whereas with a lot of disorders– and I spoke to a lot of these folks in the book who have migraine– you can be laid low for hours and hours and even days at a time with unrelenting pain. So maybe the pain of a migraine is slightly less severe and intense, but it is a grinding pain, I’m quite sure, and it lasts much longer.

FLORA LICHTMAN: You talk about your attempt to hide it, hide the condition. Can you talk about that?

TOM ZELLER JR.: Yeah. I mean, I think it’s something that most people with a headache disorder tend to learn, which is that, for good or ill, we use the word “headache” in a lot of ways in the English language, and we use it metaphorically to refer to things that are just kind of a minor annoyance. Doing your taxes are a headache or sitting in traffic as a headache.

Unfortunately, we use the same word and have the same word to describe a group of disorders that are true neurobiological disorders. And it can be hard culturally to navigate that tension. On the one hand, the same word is a punchline. And on the other hand, it’s what my doctor is telling me I have. And so, yeah, you tend to hide it.

And there’s all kinds of cultural baggage that comes with that, too. There is a sense of malingering that attaches to people who report having a headache too often, which is– I think a lot of migraineurs experience this too, a sense that you’re using it as an excuse. And so, yeah, I think that you learn that you probably ought not invoke it very often. And if you can, you hide it.

FLORA LICHTMAN: OK, so what is causing the pain?

TOM ZELLER JR.: That’s the million dollar question, Flora. We don’t know exactly. I think the prevailing wisdom for most of the 20th century– and in fact, going back many centuries– was that blood flow was somehow playing a role or that the basic choreography of a headache was that you had dilated blood vessels somewhere in the cranial anatomy, probably in the meninges or the dural layers that surround the brain, and probably because those are the most innervated parts of the head, too. So those blood vessels are getting engorged, possibly irritating some nociceptive fibers there, sending signals to the brain, and causing pain.

But we’ve learned, probably more recently than we should, that that’s probably too simple, that there’s definitely a central nervous system component to this and maybe even the prime driver. So we know that certain parts of the brain are lighting up during the event. We know that certain neurochemicals are elevated during the event. But what exactly is the prime mover in all that? And in the end, what is hurting? What anatomy is causing the pain? We don’t know, surprisingly.

FLORA LICHTMAN: Do we understand migraines any better?

TOM ZELLER JR.: No, no. In fact, I’m speaking of migraine most often because that’s the most studied headache disorder there is. So most of what we know about headaches comes from studying migraine itself. And no, we don’t know precisely. There’s a lot of debate and discussion between schools of scientists who think that the vasculature still is a sort of important component in all this. And maybe it starts in the vasculature, and the central nervous system and brain are reacting to some event. Other scientists I spoke to feel it’s the complete opposite, that this is all sort of a central nervous system disease and that the blood vessels are just sort of extras in the whole choreography of it all.

FLORA LICHTMAN: Why don’t we understand this better?

TOM ZELLER JR.: Well, I think there are a lot of reasons behind it. I mean, one we already talked a little bit about. I think that it’s easy to diminish the word “headache.” We didn’t take it seriously. And that cultural residue has been with us for a long time.

But I think there are other reasons, too. And it would not surprise listeners to know or to talk about the fact that women’s health in general has been given short shrift over–

FLORA LICHTMAN: We know it well.

TOM ZELLER JR.: –how many decades. Yes. So the fact that migraine, which is probably the most common headache disorder and is almost certainly outside the reach of most over-the-counter medications, and it occurs mostly in women by an order of, I think, 3 to 1. So I think the fact that women– and it’s not even a thing. I’m quite sure that the fact that most women were presenting in doctor’s offices with this and doctors reacting to it– you know, you need to relax more. You need to stop stressing.

These are things that were stated in doctor’s offices and also written about in popular MD newspaper columns, that I could cure any migraine if a woman would just tell me what’s bothering her. Now, I can’t tell you how infuriating that must be to hear when you’re actually having a neurological event.

FLORA LICHTMAN: I can picture it. I would be pretty– I am struggling for the radio-safe word right now. I’d be pretty angry. Yeah.

TOM ZELLER JR.: Yeah, there were a lot of women that I talked to who told me about experiencing similar things even today. There’s still this residue that invades the clinic. And I think that that attitude towards these disorders has been a detriment to the science and a detriment to all of us, not just women.

FLORA LICHTMAN: Do you feel like you were taken seriously when you went to doctors?

TOM ZELLER JR.: I document this a bit in the book. I think that I was listened to. I mean, the earliest doctors that I went to were– it was a primary care doctor, which is who most headache patients are going to encounter with these disorders, because there are far too few headache specialists, even among neurologists, if you can get in to see one. A very small percentage of them have had any special training in headache science or headache treatment.

So my encounters were usually with my primary care doctor, who didn’t really much about headache, but he was at least willing to listen. So I would bring him literature from the journals and say, hey, this is what we’re learning, or, hey, there’s this new medication out there. And he would sort of shrug and say, OK, let’s give it a go.

So in that sense, I think I was lucky. But I do think that as I moved from place to place and new doctor to new doctor, there were times when I had grown weary of having to explain myself again. You’ve had this disorder, and you come to a new doctor, and it’s sort of like you have to prove yourself, in some way, and becoming convincing.

It’s an invisible disorder. There’s no biomarker. There’s no test. There’s no scan you can do that will prove that I have this thing. And so a lot of it is just a high art of convincing someone.

FLORA LICHTMAN: I think anyone with a chronic condition that’s hard to diagnose and treat will relate to that.

TOM ZELLER JR.: Absolutely. Yeah, it’s very common.

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FLORA LICHTMAN: After the break, is headache science getting any more respect?

TOM ZELLER JR.: Almost every scientist that I spoke to who devoted their research life to headaches or to treating it in the clinic were told by mentors, at the time they were going through school, do not waste your time on such a thing. It’s too trivial. You can’t help the patients. They’re hysterical.

FLORA LICHTMAN: Don’t go away.

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FLORA LICHTMAN: How many treatments did you try? And did you have any success with them?

TOM ZELLER JR.: The interesting thing that I learned– and I sort of knew it going into the book– is that there were very few, in fact no, real medications that had ever been developed and marketed specifically for a migraine and certainly cluster headache disorder until 2018, which is incredibly recently. Before that, almost every other drug– in fact, for migraine, every single drug ever prescribed– was usually developed for some other disorder. And it just seemed off label to maybe help some people with their headaches so they would give it to you.

So most people were prescribed a variety of antidepressants, antiepileptics, anti-seizure medications, steroids. And they all had very, very powerful side effects that were almost sometimes worse than the disease itself.

There were, in the ’90s, the triptans, which a lot of listeners may know. And they were pretty good at aborting a particular headache. So the drug classes are divided into abortives, which are used to silence a headache that’s happening. And then there are preventives that would supposedly help to prevent the next headache from coming on.

The triptans were pretty good at aborting. The problem with it is that you couldn’t take it too often, because it could lead to a cycle of much more painful headaches. They call them rebound headaches. So it wasn’t a perfect remedy. But that’s kind of what we muddled through with for the last 30 years until these new class of drugs came out.

And these are pretty sophisticated drugs. They’re called CGRP inhibitors. CGRP is a neuropeptide that’s elevated in the blood during a headache attack. And so the thinking was, well, what if we inhibited this in some way? Would it help some people? And it got FDA approval in 2018, both for the prevention– first time a drug was designed for the prevention of migraine– and a year later for cluster headache. And you take it as an injection.

And I’m not sure what the real-world efficacy rate is. I think most of these drugs, even the best ones, kind of eventually settle out at around half and half. So it works for about half of people. That’s still kind of a home run for a pharmaceutical.

An interesting thing about the CGRP drugs is that, for people who do respond to it, who do have the right sort of physiology for this to work, respond remarkably well. And so I did talk to a lot of patients who had been just ground down by migraine headaches for the last 20 years suddenly can stop all drugs and just don’t have headaches at all. And it’s like awakenings. I mean, they just sort of emerge into a life that they’ve forgotten about.

And so it’s kind of miraculous in that way. I took it, and I do think it probably helped me. Sometimes it’s hard to say, because when you feel a series of cluster attacks coming on, you tend to take all kinds of stuff. Like, I’ve got my magic little herbal sort of things that who knows if it does anything. I’ve tried psilocybin. And you might be taking any of these things at any given time, so it’s hard to prove what actually might have worked. But I think it worked. I think it worked for me.

FLORA LICHTMAN: Yeah, you talk about headache science as having this reputation for being a corner of neurology that’s like for the flunkies. Is that changing?

TOM ZELLER JR.: I don’t think it’s changing. I think it’s changing somewhat. And I think, by having said this out loud in a book, maybe it’ll help to change somewhat. I don’t know. But I have to tell you, almost every scientist that I spoke to, particularly in the United States, who devoted their research life to headaches or to treating it in the clinic, were told by mentors, at the time they were going through school, do not waste your time on such a thing. It’s too trivial. You can’t help the patients. They’re hysterical. They’ll never– you’ll burn out. It’s just not worth your time. Do something that’s more swashbuckling with your career. These are researchers at Yale, at the Mayo Clinic, at UCLA, all of them the same message.

FLORA LICHTMAN: Not flunkies.

TOM ZELLER JR.: Not flunkies. No, no. But, also, they still, even decades after they’ve made that decision to spend their life doing it, are just amazed that that’s the way they were encouraged. And by the way, even in medical school, I talked to current students who say, yeah, we spend maybe about a half hour talking about headaches in all of medical school at all.

FLORA LICHTMAN: Wow.

TOM ZELLER JR.: Which is so strange because it’s so common, and you can imagine how much money you would inject back into the economy if you could just cure even half of them.

FLORA LICHTMAN: What do you want people to take away?

TOM ZELLER JR.: I mean, I’d love people to realize, even headache sufferers, but particularly scientists and even funders, scientific funders, that what’s happening during these disorders is a fascinating neurological set of events that could actually teach us a lot about the basic functioning of the central nervous system if we bothered to pay attention to them enough.

You have such a huge population of people, most of whom are willing to submit to any sort of test or any sort of trial. And if we just spent a little more time paying attention to it, we actually might learn quite a lot about other disorders and a lot about the nature of pain itself. So there’s that.

And I also think that if a headache patient can step back a little bit between bouts, it’s probably worth recognizing that there’s a lot of thought within the scientific community that these disorders are something that, in some way, confers a benefit. That sounds almost counterintuitive, but there’s not really a good explanation for why they persist in the human animal the way they do. They’ve been present such that we can tell in the species, in the same proportion for probably millennia.

So it doesn’t seem to be something that’s getting worse. It doesn’t seem to be environmental. It’s something hardwired in some of us. And there’s some sense that, were there not some ancillary benefit to that trait, it would have disappeared by now. So what is that? We don’t know. I mean, there are studies that look at whether or not there’s something protective with relation to Alzheimer’s. You can find some research on that. Not proven, purely speculative, but it’s being looked at.

There’s a sense that this is a manifestation of central nervous system that’s exquisitely attuned to the environment, which would have been incredibly useful in our species. A person with a headache disorder could actually imagine that what they have, even though it’s hard to think about it that way, is actually a benefit.

FLORA LICHTMAN: That’s quite fascinating. Tom, thanks for sharing your story with us.

TOM ZELLER JR.: Hey, it’s been really great, and I appreciate you taking an interest.

FLORA LICHTMAN: Tom Zeller Jr. editor-in-chief of Undark and author of the new book The Headache: The Science of a Most Confounding Affliction and a Search for Relief.

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Thanks for listening. Don’t forget to rate and review us wherever you listen. It really does help us get the word out and get the show in front of new listeners. Today’s episode was produced by Kathleen Davis. I’m Flora Lichtman. Thanks for listening.

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