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Speaker 1: Welcome to Get Connected with Nina del Rio, a weekly

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Speaker 1: conversation about fitness, health and happenings in our community on

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Speaker 1: one oh six point seven Light FM.

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Speaker 2: Good morning, and welcome to Get Connected. Headaches. Perhaps forty

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Speaker 2: percent of everyone in the world has them, but they

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Speaker 2: are remarkably understudied and misunderstood. Our guest is veteran science

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Speaker 2: journalist Tom Zeller Junior. For his first book, he has

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Speaker 2: written The Headache, The Science of a most confounding Affliction

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Speaker 2: and a Search for Relief. Tom Zeller Junior, thank you

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Speaker 2: for being on the show. Thanks for having me so

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Speaker 2: The impetus for this book is in part your own

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Speaker 2: history with cluster headaches, which are rare. They are painful.

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Speaker 2: It is perhaps impossible to accurately describe pain, which is

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Speaker 2: very personal, very subjective. But what are cluster headaches and

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Speaker 2: how do you describe them?

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Speaker 3: Sure so, cluster headaches, as you said, are rare.

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Speaker 4: They tend to affect more men than women, unlike migrain

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Speaker 4: to sort of the complete opposite and probably a more

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Speaker 4: familiar headache disorder to most of your listeners. I describe

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Speaker 4: the pain of a cluster headache in terms of intensity

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Speaker 4: is being similar to having your hand on a hot

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Speaker 4: burner but not being able to take it off for

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Speaker 4: about an hour or two while the attack is happening.

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Speaker 4: So it's a very intense. It's unlike a migraine. You

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Speaker 4: can't sit still. It's sort of a hopping pain, you know.

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Speaker 4: I guess your listeners probably could imagine like hitting their

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Speaker 4: shin or something, and that pain is like quite intense.

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Speaker 4: But it doesn't go away for a good hour or two,

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Speaker 4: and then it goes away, and then it comes back,

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Speaker 4: and then it goes away, and it comes back several

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Speaker 4: times a day for a couple of months out of

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Speaker 4: the year, and then evaporates all together and is gone.

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Speaker 2: They also have this weird phenomena among headaches, I guess,

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Speaker 2: particular phenomena of arriving at certain times of day or year.

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Speaker 4: What does that suggest, Yeah, it definitely suggests it's not perfect.

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Speaker 4: If it were perfect that way, it would be predictable

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Speaker 4: and we could probably we manage it a lot better.

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Speaker 4: But there is some correlation with time of year and

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Speaker 4: time of day, which definitely suggests the circadian rhythm, which

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Speaker 4: is governed by a piece of our anatomy called the

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Speaker 4: hypothalamus and there's definitely some sort of rhythmicity to these things.

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Speaker 4: Probably true for migraine as well, but it doesn't present

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Speaker 4: in quite the same way, so it's harder to pin down.

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Speaker 3: But I think in both.

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Speaker 4: Cases it begins with the central nervous system and the brain.

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Speaker 2: If cluster headaches happen most often with men, women are

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Speaker 2: more susceptible to migraines. Talk briefly about what migraines are

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Speaker 2: as well.

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Speaker 4: Migraines are probably a familiar term to a lot of

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Speaker 4: your listeners. I'm sure something like fifteen percent of the

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Speaker 4: population is affected by them, mostly women, by a ratio

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Speaker 4: of about three to one, and they come with a

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Speaker 4: lot of neurological and physiological symptoms. A precursors to migraine

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Speaker 4: headache pain can often involve fuzzy eyes, can involve sensitivity

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Speaker 4: to sights and sounds and smells, and then ending in

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Speaker 4: a cascade of grinding head pain that sends a patient

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Speaker 4: into a dark room for hours and sometimes even days

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Speaker 4: at a time. You know all of these clear indicators

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Speaker 4: that the central nervous system is involved, that there's a

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Speaker 4: central nervous system breakdown unfolding, and they tend to divide

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Speaker 4: migrainers up into either chronic or episodic migraine. So a

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Speaker 4: chronic suffer never, you know, is probably more than fifteen

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Speaker 4: migraine attacks per month. Episodic is fewer than that, but

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Speaker 4: definitely it's something that's constantly a part of a person's life,

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Speaker 4: and while they're experiencing it, they're almost entirely debilitated.

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Speaker 2: Again, nearly forty percent of everyone in the world suffers

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Speaker 2: from some sort of headache. We've talked about cluster headaches,

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Speaker 2: which are the least common then migraine. The most common

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Speaker 2: would be tension headaches, but yet all of them remain

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Speaker 2: largely unstudied. We're going to talk about the reasons. The

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Speaker 2: first I would like to mention has to do with

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Speaker 2: migraines and women, because it's women. There's this whole built

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Speaker 2: in factor that's been going on for centuries that it's psychological.

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Speaker 4: Yeah, yeah, there's no question that you know, and in

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Speaker 4: fact that affects all of us who have headaches. And

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Speaker 4: for decades, even into the twentieth century, it was thought that,

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Speaker 4: you know, women who had migraine headaches were it was

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Speaker 4: something that was psychosomatic. They were stressed too, much, they

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Speaker 4: worried too much, so often they were told that they

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Speaker 4: weren't sleeping with their husbands enough. It was just runs

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Speaker 4: the gamut of the most ridiculous. And this is familiar,

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Speaker 4: I'm sure to any woman. I heard it from a

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Speaker 4: lot of migraine patients myself when researching the book, that

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Speaker 4: lots of disorders that are associated more strongly with women

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Speaker 4: tend to get this sort of reaction out of the

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Speaker 4: medical establishment. And so yes, that's part of the reason

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Speaker 4: I think that we don't fully understand these disorders, or

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Speaker 4: at least we're not as far along as we ought

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Speaker 4: to be because they weren't taken seriously.

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Speaker 2: At the other side of the equation, headache specialists, because

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Speaker 2: headache is so difficult to understand, they report a burnout

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Speaker 2: rate twice of that of adults working in all of

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Speaker 2: their fields. Can you talk about the specialists and the

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Speaker 2: challenges for them.

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Speaker 4: Yeah, that statistic is real. The burnout rate is quite

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Speaker 4: high for people who study headaches, and in part you

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Speaker 4: can understand it because there's traditionally been very little you

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Speaker 4: could do for someone who is suffering from a first

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Speaker 4: order headache disorder like migraine or cluster headache, you would

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Speaker 4: have to the suite of medications that you could prescribe.

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Speaker 4: All of them were designed for other disorders. They weren't

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Speaker 4: designed to treat migraine or to treat cluster headache, but

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Speaker 4: they seem to maybe kind of sort of work. And

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Speaker 4: so you might be given an anti epleptic, or you

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Speaker 4: might be given a beta blocker, or you might be

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Speaker 4: given a steroid, and all of these things have really

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Speaker 4: nasty side effects that add their own sort of burden

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Speaker 4: to this. So, yeah, there was this sort of journey

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Speaker 4: that the headache sufferers had to go on, and that's

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Speaker 4: sort of the aspect of things that I think is

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Speaker 4: starting to shift.

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Speaker 2: Our guest is Tom Zeller Junior. He's author of The Headache,

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Speaker 2: The Science of a most Confounding Affliction, and a Search

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Speaker 2: for Relief. He is co founder and editor in chief

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Speaker 2: of Undark, a nonprofit digital magazine exploring the intersection of

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Speaker 2: science and society. Previously, he was a reporter and columnist

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Speaker 2: at The New York Times and editor at large for

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Speaker 2: National Geographic and a Knight Science Journalism Fellow at the

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Speaker 2: Massachusetts Institute of Technology MIT. You're listening to get connected

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Speaker 2: on one oh six point seven light FM Imina del Rio.

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Speaker 2: You also point out a statistic in the book that

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Speaker 2: the meantime for a correct diagnosis for a cluster headache

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Speaker 2: patient in the US is between six point six to

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Speaker 2: eight point nine years. In the meantime, while people are

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Speaker 2: trying to figure it out, they're dealing with lots of prescriptions.

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Speaker 2: You were dealing with lots of prescriptions. It was interesting

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Speaker 2: to me a sidebar, we worked in the hipodrome at

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Speaker 2: the exact same time when we were working both in

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Speaker 2: the same building. I was at a radio station. You

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Speaker 2: were working for the Times. But this was a moment

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Speaker 2: when you were trying all kinds of prescriptions and combinations.

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Speaker 2: Can you talk about sort of the tactics you took

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Speaker 2: to figure it out?

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Speaker 3: I mean, I think you know.

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Speaker 4: In another part of the book, I talk about polypharmacy,

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Speaker 4: which is usually a term that we used for geriatric

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Speaker 4: populations because as people age, they tend to start taking

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Speaker 4: a lot more drugs. But migrain and cluster patients are

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Speaker 4: similarly multi medicated in ways that are problematic under themselves,

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Speaker 4: and they're doing a lot of it. And because a

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Speaker 4: lot of these prescription drugs are only middling in their effects.

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Speaker 4: We also tend to sort of get into you know,

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Speaker 4: we all get online and try to talk to other

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Speaker 4: patients about what they're doing, herbal medications, illegal medications. Psilocybin

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Speaker 4: is a very common drug that people explore. So at

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Speaker 4: my worst, you know, yes, I was popping all kinds

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Speaker 4: of pills, some of them prescribe, some of them not.

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Speaker 3: Desperation.

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Speaker 4: Probably at least at one moment I took too many

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Speaker 4: and had a very sort of nasty reaction to that.

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Speaker 4: But I also think that it's not that unusual as

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Speaker 4: we sort of in desperation work with imperfect medications that

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Speaker 4: are given to us by doctors, and then combine that

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Speaker 4: with imperfect medications that we find on you know, herbal shelves,

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Speaker 4: and then combine that if some cases with illegal substances.

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Speaker 3: You can imagine the outcome.

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Speaker 2: Interestingly, the history of a headache suggests that people have

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Speaker 2: been trying to deal with it for so long. Notably,

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Speaker 2: Charles Darwin studied headaches. A common practice from his time,

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Speaker 2: as you mentioned, was sticking beans to the sides of

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Speaker 2: someone's head, but he also had an idea of treating

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Speaker 2: them with a spinning bed contraption. What does that kind

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Speaker 2: of get.

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Speaker 4: To yes, Yeah, well so, yes, Charles Darwin did have

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Speaker 4: migrants himself, and he during his travels in South America,

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Speaker 4: an herbal treatment or.

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Speaker 3: A sort of traditional treatment was to put the beans

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Speaker 3: on the this sie the head.

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Speaker 4: It was his grandfather, Erasthmus Darwin who had the idea

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Speaker 4: that spinning someone on a centrifuge, a makeshift centrifuge by

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Speaker 4: and pushing all the blood in or out of their

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Speaker 4: head might have some effect on headache. And that sort

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Speaker 4: of touches on a prevailing idea behind headache that's lasted

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Speaker 4: many centuries, which is that surely it has something to

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Speaker 4: do with the blood moving in and out of the head.

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Speaker 3: We're discovering that that may not be actually the case.

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Speaker 4: That sort of presumption may have also played a role

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Speaker 4: in preventing more sophisticated treatments from coming out.

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Speaker 2: There's also this concept now, the concept that the migraine

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Speaker 2: doesn't come from the brain.

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Speaker 4: Yeah, or does it? I mean, that's sort of the question.

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Speaker 4: And I talked to a lot of scientists who bitterly

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Speaker 4: disagree over whether or not the migraine, the choreography of migraine,

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Speaker 4: does it begin somewhere outside the central nervous system, and

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Speaker 4: then the brain and central nervous system is reacting to

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Speaker 4: that or is it start as the genesis of it

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Speaker 4: somewhere inside the brain, and then we have all these

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Speaker 4: sort of physiological effects that attached to it. And migraine

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Speaker 4: does have a lot of other really interesting and strange

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Speaker 4: physiological effects aside from the pain. I mean, a lot

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Speaker 4: of migraine sufferers have vision problems prior to the pain

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Speaker 4: coming on, a lot of them feeling or a lot

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Speaker 4: of them have sensory like hearing issues. A lot of

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Speaker 4: them experience balanced problems, or they stop having the ability

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Speaker 4: to read. So all of these things are incredibly fascinating

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Speaker 4: when you take them into isolation and clearly indicate to

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Speaker 4: me and to a lot of scientists that there's a

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Speaker 4: huge central nervous system and brain component to this that

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Speaker 4: we should be paying more attention.

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Speaker 2: To as far as the short term thinking about treatment.

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Speaker 2: So you mentioned many in the book tripp Dans, CGRP blockers, botox.

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Speaker 2: We see advertised all the time histamines. They work for

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Speaker 2: some people, they don't work for others. They work today,

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Speaker 2: they might not work for the long term. Are there

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Speaker 2: some that seem to be more reliable, more affordable if

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Speaker 2: you had to line them up on a grid.

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Speaker 4: You know, I would say that the new CGRP medications

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Speaker 4: are the most promising that I've seen in terms of

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Speaker 4: the number of people who tend to respond. Now, you know,

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Speaker 4: if you get a population big enough, the sort of

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Speaker 4: mean in terms of who's going to respond and who's

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Speaker 4: not tends to kind of gravitate towards that middle fifty

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Speaker 4: to fifty. But with the CGRPs and other fascinating aspect

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Speaker 4: of it is that people who do respond, there's a

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Speaker 4: group called super responders who really just see their lives

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Speaker 4: completely transformed. It's almost an awakening. A person who has

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Speaker 4: been just debilitated by migraines their entire lives overnight suddenly

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Speaker 4: no longer have any headache at all, and that's not

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Speaker 4: really happened with any medication before. So I would put

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Speaker 4: that at the top of the list. I would not

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Speaker 4: describe it as affordable.

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Speaker 3: A lot of.

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Speaker 4: Insurance companies even today are still battling whether or not

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Speaker 4: they should cover these things, and I should mention that

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Speaker 4: in a lot of cases requires an injection.

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Speaker 3: So it's something that you know, it's serious medication.

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Speaker 4: There are oral versions of it that have hit the

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Speaker 4: market and are continuing to come out. So and if

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Speaker 4: you can't get insurance coverage for it, they're incredibly expensive.

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Speaker 3: I mean, because as any new medication would be. So

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Speaker 3: I would say those are.

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Speaker 4: The most promising, but also the most pricey, and then

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Speaker 4: down from there. I mean, I don't think I would

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Speaker 4: describe any other medication as being particularly useful to a

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Speaker 4: broad population base.

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Speaker 3: It's sort of person to person.

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Speaker 2: There's also something about finding a medical person who works

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Speaker 2: for you. Your story includes going to people who were kind

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Speaker 2: of under the radar, and you know not so let's

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Speaker 2: say a little bit shady to treatments in Denmark of

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Speaker 2: the things that the average person is not going to

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Speaker 2: be able to sort of look into. And there's the

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Speaker 2: disagreement even in the headache scientific community. So where should

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Speaker 2: people go for help?

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Speaker 4: Well, I think that you know, in most cases, even today,

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Speaker 4: your primary care physician is going to be that's going

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Speaker 4: to be the person that you come into contact with

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Speaker 4: first and probably only. And I say that because the

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Speaker 4: number of doctors who specialize.

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Speaker 3: In head medicine is incredibly small. There are a few.

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Speaker 4: Thousand maybe in all of the US. So I would say,

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Speaker 4: you know, the best that a patient can do is

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Speaker 4: come armed with some literature, come armed with some sense

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Speaker 4: of like where the science actually is. And there are

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Speaker 4: a lot of resources online that will sort of arm

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Speaker 4: you in that way when you go into that interaction.

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Speaker 4: But it is true that like a lot of scientists

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Speaker 4: avoid headache medicine. They don't They don't want to get

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Speaker 4: into it because it's it's a tough not to crack,

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Speaker 4: and their colleagues tell them that it's a backwater and

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Speaker 4: you don't want to waste your time studying headaches.

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Speaker 2: So after all the studying you've done of headaches, how

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Speaker 2: are your headaches today and how are you sort of

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Speaker 2: feeling about them just as a concept overall?

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Speaker 4: Yeah, you know, my headaches actually are pretty good. I

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Speaker 4: mean it's characteristic of cluster headaches, unlike migraines, go away

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Speaker 4: for many many months at a time, sometimes even years.

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Speaker 4: And as with migraines, clusters as you get older tend

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Speaker 4: to diminish a bit for a lot of patients. Surely

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Speaker 4: there's a hormonal and a metabolic component to that. But

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Speaker 4: as I become an older man, my headaches come less often,

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Speaker 4: so that's a good thing. The CGRP medications when I

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Speaker 4: have had the headaches come on, I think have helped.

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Speaker 4: I think they have helped me. They don't help everyone,

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Speaker 4: but I think they have helped me. So I feel

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Speaker 4: pretty good about where I am. I probably couldn't have

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Speaker 4: written the book if I hadn't gotten to this point

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Speaker 4: where they were under control. So yeah, I think things

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Speaker 4: are looking up, and I think that a lot of

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Speaker 4: headache patients can take comfort in the idea that things

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Speaker 4: are looking up for everyone in that way.

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Speaker 2: Our guest is Tom Zeller Junior. The book is The Headache,

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Speaker 2: the Signs of a most confounding affliction and a search

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Speaker 2: for relief. Thank you for being on get Connected.

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Speaker 3: Thanks Nina, I appreciate it.

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Speaker 1: This has been Get Connected with Nina del Rio on

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Speaker 1: one oh six point seven light Fm. The views and

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Speaker 1: opinions of our guests do not necessarily reflect the views

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