Instant Genius - Exploding Head Syndrome

Episode Date: March 14, 2018

We talk to professor Brian Sharpless about a little-known sleep disorder called Exploding Head Syndrome and the research that hopes find a treatment. Hosted on Acast. See acast.com/privacy for more information. Learn more about your ad choices. Visit podcastchoices.com/adchoices

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You're listening to the Science Focus podcast from the BBC Focus magazine team. With the UK's best-selling science and technology monthly, available in print and in several digital formats throughout the world. Find out more at ScienceFocus.com or look out for us in your app store. Hello and welcome to the Science Focus podcast. I'm Alice Lipscomb, Southwell, the production editor of BBC Focus magazine. In today's episode, we're talking about exploding head syndrome. It sounds like the stuff of nightmares, but in reality, it's a sleep disorder

where sufferers hear a deafling bang just before they fall asleep. Little is known about the condition, so last year, the focus team and a group of scientists from Goldsmiths University, Harvard Medical School and Argosy University, launched a study to find out more. The goal was to get a sense of how common the condition might actually be, and hopefully to crowdsource the beginnings of a treatment for it. The results of our experiment will be published later in the year in BBC Focus magazine.

But with World's Sleep Day just around the corner, we thought this would be a good moment to catch up with Professor Brian Sharpless, one of the world's leading experts on the syndrome, and one of the scientists leading our study. Here's Brian explaining exactly what exploding head syndrome is. Well, exploding head syndrome is a very colourful name for the experience of either going to sleep or waking up and hearing a massively loud noise.

So it can sound like a bomb. or a gun being fired next to or even inside of your head. So not surprisingly, this is pretty terrifying for a lot of people, and they wake up confused and scared, maybe thinking that something really bad has happened. In addition to the noise, about a quarter of people who have it, will also see some visual phenomena. So they'll see something like lightning or visual static in front of their eyes

as they're hearing the noise, which could make it extra creepy. Yeah. And so when we first embarked on this piece of research and I was telling people about it, the first thing always asked me was, is this like when I fall asleep and I suddenly jerk? Is it the same thing? Uh-huh. That's a great question and we don't really have firm answers. I was just at a conference in October and after my talk we had a very spirited discussion about just this question with some strong opinions on either side. on the surface they bear some similarities they occur roughly in the same period of sleep transition as exploding head syndrome we call this a myoclonic jerk by the way when you when you have that yeah and so it has some similarities my hunch is that they'll be overlapping but not identical phenomena but the research is still out on that this is a bit scarier though the exploding head syndrome oh yeah I imagine because well so one of the incredible things

that came about, I thought, was we launched the survey and then the Guardian did a piece, thanks to your colleague Chris Finch. So, you know, what is Exploiting Head Syndrome? And suddenly, there were all these people in the comments who had no idea they didn't have a name for what they had.

And then suddenly we gave them nomenclature. We gave them something that they could call it. Yeah. But what was interesting, as he said, it was scary. They cited gunshots, symbols, fireworks, I think Chris gave those descriptions and people down in the comments are like, yeah, that's what that is.

And you described it like a bang. When they are calling it something quite specific like a firework, are they putting a perception on top of it? Or is that what the sound sounds like? Yeah. The research seems to indicate that what's happening is that your auditory neurons are firing all at once. So instead of while you're going to sleep,

having them be inhibited, what seems to happen is they fire. So you get this massive burst of neural activity, which to us sounds like a very, very loud noise. So your brain always wants to try to make sense of what's going on around it, especially the really weird things. So I think your brain in some way does organize it. But what seems to be consistent is that the sounds people here are always diffuse.

They're kind of vague. So I've never heard anybody who actually has exploding heads. syndrome, report articulate speech, for instance. It's always this like a bang or one of the, one of my favorite descriptions was it was like you're in a Looney Tunes cartoon and you hear the coyote dropping a piano from like 10 stories and hitting the ground. So you hear stuff like that, not articulate speech. You're not hearing like, you know, symphonies or anything like that. And so, so how much do we know about how this sound comes about how it's generated in the brain? and why it is generated.

Yeah, well, we've been lucky enough to have a few people who have experienced exploding head syndrome while undergoing a sleep study. So we've been able to identify when it occurs. And strangely enough, it happens when people aren't actually asleep, but they feel that they are. They have sleep state misperception, as it's called. So when exploding head syndrome occurs, people are really. in a state of deep relaxation that happens right before sleep. So there are typical brainwave patterns

that are a mixture of wakefulness and the beginning of sleep. That's what's going on during exploding head syndrome. And our best guess as to why it happens is we have a part of our brain called the brain stem. And in there, we have a part called the reticular formation. And this is responsible for helping us get to sleep. So inhibiting our motor neurons, inhibiting our visual, and auditory neurons. And for whatever reason, either because maybe sleep disturbances, anxiety could be a trigger, or possibly even a genetic mutation on chromosome 19. If you have any of those things, you're more likely to have sort of a mistake as you're going to sleep. And sleep is an amazingly complex process, and there's a lot that can go wrong. And one of the ways I like to think of

exploding head syndrome, it's another and a long list of the ways that sleep can go wrong. Right. And so that formation, was it the reticular formation? The reticular formation of the brainstem, yeah. And so am I right in saying that that's the kind of network that essentially helps you, you know, not run around while you're sleeping and not fall out of your bed? Is that right? Right, right, right. So yeah, during rapid eye movement sleep, which is the stage of sleep where dreaming occurs, our bodies are paralyzed. It's not that we want to move, but we can't. We are physically immobile. and that's due to the brainstem. And we know quite a bit about that as well, down to even the neurotransmitters that are responsible for the paralysis.

And this rang true, again, purely anecdotally, but in the comments, people seem to experience this syndrome more when they were either run down, stressed, not sleeping so well. Does that ring true with some of the things you've seen in research? Absolutely. Absolutely. Pretty much, if you have disrupted sleep or you're jet lagged, or especially if you drink alcohol or caffeine before you go to sleep, you're far more likely to experience these strange sleep experiences. Absolutely. And that brings me to my next question quite nicely. I mean, I think part of the interest in it as well is it kind of ties into a lot of other subjects like sleep walking and sleep paralysis. it seems that we obviously think of ourselves as out cold when we're asleep, but it seems like a lot is actually going on in our brains.

Is that true when we're asleep? Oh, yeah. Our brains are very active when we sleep. And during the different stages of sleep, if you look at EEG readings, you can see that they differ in the types of activity that are going on. During REM sleep, the brain is massively active. it actually consumes, it sometimes consumes more oxygen during REM sleep than if we were awake and working on a particularly challenging puzzle, for instance.

So during REM, you're very, very active, absolutely. I know, you know, there's a lot we don't know, but what do we know about what the brain seems to be doing when we're asleep? Yeah, consolidating information, getting rid of toxins. All these things are going on as we sleep. And even dreams, some of the research that's come out even in the past 15 years has shown that even dreams might be not just random noise, but might actually be meaningful and might be ways to, as I said, consolidate information and help us learn better. All right. And so to come back to then the syndrome, what is it that you're interested in about the syndrome? Is it just that you're looking to help? help people who suffer with it, or does it tell us that I think more interesting about the

underlying properties of the brain? Yeah, well, being a clinical psychologist, I'm very interested in how these more unusual phenomena affect people. So one of the things that I'm hoping the data will indicate is the different ways that people try to either prevent or stop these sleep experiences from happening as they're occurring. So when you're developing a new treatment, it's always a good idea to ask the people who know it best, the people that are actually experiencing it, what they do. And if you can figure out there are some patterns in the data that this approach seems to work, this one doesn't. You can build upon those things. So when I developed a treatment for sleep paralysis, I used an identical process. And beyond the practical,

like the treatment implications, I think really any time, you're looking deeply at a subject, you can learn more about sleep in general, how people react to it. So doing very basic research can be very helpful in the long run. And every time you answer one question or try to answer a question, you always come up with 15,000 more questions to ask at the next stage. So it's a lot of fun and it also hopefully pushes things forward. when we started talking about it, I had never heard of it. But then within minutes, someone I was sat, you know, three desks away, kind of heard our conversation. I was like, oh, I have that.

That happens to me. So how did you come across this and what drew you to research this as an area? Yeah, well, you're certainly not alone. I think probably, at least in the US, most general practitioner physicians don't even know about exploding headson. It's a relatively recent entry into our nomenclature. So I came to it indirectly through studying sleep paralysis. I had read a couple articles that were indicating that exploding head syndrome and sleep paralysis might occur in the same individuals a lot. And so that's how I got into it. And once I figured out there was so little

known about it, I developed an interview that diagnosticians could use to assess people. and started conducting my first two studies on undergraduates. I see. And I know we've talked about this, but roughly speaking, what do we think the kind of prevalence is? And that's something we're looking to work out as well in our research. Yeah. Well, the clinical lore up until recently was that exploding hit syndrome was rare.

And when it did occur, it only occurred in women over the age of 50. So in the studies I've done, they showed that that wasn't quite accurate because I was using a very young sample of college-aged folks. And I found a prevalence rate of 13.5% of people that have had exploding head syndrome happen at least once, which was far higher than I would have ever dreamed, to be honest. And so, yeah, it tells you that you can't really rely on clinical lore and what people think might be. going on because it might not be accurate. And it's always good to learn that we're wrong. Yeah, absolutely. And so did it surprise you? So in our, the survey that we launched, we, we had, I think, just over 6,000 people respond. And I think within that, the bigger picture is, I think it was something like over 2,000 in two days, which kind of, that kind of rate really surprised me.

Was that surprising to you as well? Yes and no. I think that once people hear about, about these things, they love talking about it. And I think doing surveys like this actually is a service to the community because a lot of people fear that they have something terribly wrong with them when they have these unusual sleep experiences and they might not even want to tell their doctor about it unless you directly ask them. I can't tell you how many people when I do interviews, I start asking them about sleep process or exploding head syndrome.

They're like, oh my God, other people have that too? I thought I was the only one. I thought I was going crazy. So I think that's very good. And then once they know that this is a thing, they're not alone. They're more than happy to share their details. But man, getting 6,000 responses was pretty incredible. And it's going to take our poor undergrad's coding that stuff.

Yeah, they're going to have a fun time. They're going to have a lot of fun. And so what are you hoping to unpick or what are you hoping to discover from our work together or even just to get from this process of getting 6,000 people who possibly have some kind of sleep disturbance. Yeah, well, I hope we can really flesh out the things that we already know. So, for instance, in a previous study, I looked at some of the things that people do to try to cope with sleep paralysis. But I was limited to 156 people. So we're going to have far more folks data to look at and hopefully get some better ideas.

is. And as I said, we'll probably discover some things that we didn't anticipate and that will set the stage for additional studies. So if anyone's listening to this or they read about it and they actually would like to kind of find out a bit more, obviously they can read about it in focus, but is there anywhere we could send them? Because I'll give a really good example. Just today, I've been writing to this guy in Australia. He's never even read Focus. But somehow, his dad told him there was this survey out there and he emailed and he said, I missed your survey and now it's now closed. Can I volunteer myself for research? Yeah. I mean, it's always a good idea to just do a quick Google search. You could maybe put in exploding head syndrome or sleep paralysis and research.

If you just want to learn more, fortunately there have been a few different good podcast. popular press pieces that have been on sleep paralysis and exploding head syndrome. You know, you have to be careful with anything you Google. And there's certainly scientific articles that are available. And some of them might be free of charge to access, depending on where you go. So if you use something like Researchgate.net, you can oftentimes find professional journal articles for free that might be behind paywalls otherwise, but they give special permission in certain cases. At the time of the research, we had quite a lot of people writing and going, I need to tell my doctor about this. So I suppose that can help start that conversation at least. Yeah, absolutely. Yeah. And you might even need to educate your doc a bit. You know, so sleep specialists and neurologists are probably going to be fairly familiar with exploding head syndrome, at least know the name and sort of its core features. But if you're working with a general practitioner, you might need to give them a bit of background.

so that they know that it is a legitimate thing, and also that it can cause some distress. So probably the most shocking finding of my early studies was just the frequency that people can have exploding hit syndrome. So some of the people I interviewed experienced it five to seven times every night, which, as you can imagine, causes additional sleep disruption, daytime wakefulness, and also makes them, you know, oftentimes scared to go to sleep because they're going to have this frightening

experience happen to them and there's very little they could do about it. And so with our little study, we've looked at how people cope with their own exploding head syndrome. Where would you like to go next with this research? Where do you want ahead with this subject in the next five years or so? Oh, yeah. Well, it was a lot. Well, it was a lot of, would be really helpful if we could develop some sort of quick psychological intervention, preferably something that could help prevent the episodes from occurring. So if we find out that engaging in certain bedtime behaviors might make it less likely to occur, that would be important information to get out there, not just to psychologists and psychiatrists, but to, you know,

general practitioners and other folks. So I think that would be helpful. And just really getting a better sense of how it affects people will potentially set the stage for more research to occur and in effect justify why it's important to look at this disorder with a really weird name. So the more the public knows about it and the more people know that it's legitimate and it causes people problems. I think all the better for the future of research in this area. And it's good you mention that. So colloquially we've called it exploding head syndrome because it has helps it get spoken about and heard about. But actually, there's a better name for it, isn't there? Well, strangely enough, exploding head syndrome is the legitimate name right now. Yeah, yeah,

it's gone by a few names over the years. It was first identified in 1876 by a guy named Silas Ware-Mitchell, and he called them sensory discharges. Then in 1920, someone sort of rediscovered it, didn't keep that name, of course, and called it a snapping of the brain, which is also a great name. And then in, I think, 1986, a fellow Brit named it Exploding Head Syndrome, and that's really been with us ever since. So in some ways, it's a great name. I mean, it's catchy and it grabs attention. But in another way, you know, it's not terribly accurate, and this is a good thing, right? My office would be terribly messy if that was accurate. So kind of like how rap stars change their names as they get older, I think exploding head syndrome could do with a rename. So a couple years ago, Peter Goadsby and I argued that we might change it to episodic cranial sensory shock. So it's not as catchy, but I think it better attributes to the person who identified it, who called them sensory discharges. And it's a bit more accurate. And it also captures the non-auditory elements. So there's light flashes I was telling you about.

So I think that's a little bit more accurate. Yeah, but it's not as catchy. So it's not as good for reporters, but that's just how it goes. And this might be a little tricky, but is it, you know, is this something as a clinician that is common? That there are these things out there, these phenomenon that we, people don't have a for, but we need to go and research it a little bit more, or have we categorized everything? Oh, no, there's a lot we don't know. And any time a diagnostic system, whether it's in medicine, psychiatry, what have you,

decisions are always made to include some things and to leave other things out. These are based sometimes on science, sometimes on politics, sometimes on strong feelings, sometimes on who's in the room making the decision. And so to catalog every single disorder that's been identified would be a massive undertaking and would dramatically increase the cost of diagnostic manuals. So there are a lot of things that might have been just written about very briefly, like a few articles back in the 70s or something that might have only been rediscovered recently. And there are a lot of disorders like that. And then you've got the idea of sort of cross-cultural disorders.

So a set of symptoms that might occur in one culture that might not appear in another culture. So there are a number of things like that. And in a recent book, I collected 22 of them and tried to synthesize the research base. Of cross-culture syndromes? Oh, just in general. just unusual and rare disorders and some of them might still be unusual but are actually far from rare

it's just we don't ask about them clinically and our patients oftentimes don't volunteer that they have them because they don't know what the hell they are. So it sort of creates a situation where nobody's really talking about them. That's Professor Brian Sharpless there talking about the science of exploding head syndrome

His book, Unusual and Rare Psychological Disorders, is available now from Oxford University Press. Thanks for listening to The Science Focus podcast. In our March issue, which is on sale now, we look at the effects of loneliness on our mental health, investigate the ways you can stress-proof your life, and find out if we can ever prevent natural disasters. And of course, there's much more inside. Thank you for listening to the Science Focus podcast from the BBC Focus magazine team. We're the UK's best-selling science and technology monthly, available in print and in several digital formats throughout the world. Find out more at ScienceFocus.com or look out for us in your app store. This podcast is sponsored by Name, Audio and Focal.

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