People were experiencing sleep disorders long before they were studied to the degree they are now. The first European account of narcolepsy appeared in the 1600s, but it would be well into the 19th century before the condition was researched.
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Welcome to Stuff You Missed in History Class from how Stuff Works dot com. Hello, and welcome to the podcast. I'm Holly Frying and I'm Tracy D. Wilson. So I have always been fascinated with sleep disorders, partially because absolutely no one in my family is what you would categorize as a regular sleeper. Like, growing up, if you woke up at any hour of the day or night, there was already someone awake in my house doing something. And I grew up with insomnia. I had it for decades and decades, and it sort of suddenly went away in my mid thirties. And I know that sounds crazy when I'm about to say, when I say what I'm about to say, but I actually quite miss my insomnia. I think, when that's your standard operating mode and then you don't have it anymore, it just feels weird. I missed the quiet time alone in my head. But today we're not going to talk about insomnia, although it is going to be mentioned in relation to narcilepsy, which is the topic where a really covering and I kind of feel like narcolepsy suffers from a similar problem in the public consciousness as schizophrenia. UH. While schizoade behavior is often really incorrectly conflated with other mental disorders, particularly multiple personality disorder UH in film and television and even casual conversation. Narcolepsy is often misrepresented in cultural shorthand as being the scenario where someone just can't stay awake or is very sleepy. And while sleepiness is certainly one of the symptoms of narcilepsy, to describe it that way is a pretty serious oversimplification. And additionally, sleep medicine has really only come into its own in the last three decades or so. There were was work being done before that, which is what we're primarily going to talk about. But UH, people were experiencing these sleep disorders long before they were studied to the degree they are now, and so there was this whole history of it. And you may remember that we talked a little bit about sleepwalking during our Albert Terrell episode almost two years ago, and in that one we mostly discussed Terrell's lawyer using sleepwalking is a murder trial defense, and the science around it was mostly contextual in terms of how it did or did not match up with Terrell's claims. UH. And in this episode, however, we're going to go much deeper into sleep science and talk about what narcailepsy is, how it was first identified at least in the records we know, and how research continues to reveal new information about it all the time. So the time traveling science tale it ranges from the sixt right up to present day. UH. But first we're going to talk about what the disorder really is. And I will put the caveat out there out of the gate that the sources that we're working from here are pretty much covering narcolepsy as it has been addressed and discussed in UH, Europe and North America. There have certainly been other recognitions of it, but in terms of like clinical papers that I could access and read and UH study on it, pretty much sticking to these UM. I would really love to do a whole other episode or a series at some point on sort of how different cultures view sleep and sleep disorders, because, as I said, it's one of those pet areas of mine. But today we're most sleep sticking to kind of the Western approach. UH. And I want to give one really quick note and trigger warning, and it's really probably UM kind of an over being overcautious with this. One of the earliest recorded cases that we're going to talk about does involve a patient with a history of sexual violence towards children. Uh So, if that is an issue that you're sensitive to you or one that you are not comfortable having a younger history buff here about today. Heads up. It is a really brief mention and it falls pretty late in this first of two episodes. It's not going to be any sort of detailed situation, and we'll give you another quick warning as we come up to that point in the history, so you can skip past it if you want to. It's, like I said, it's pretty brief. So first up, we're going to talk about what narcolepsy actually is. So if you're not actually familiar with it, it's a brain disorder that's characterized by sort of an out of wax sleep wake cycle. Somebody with narcolepsy might have moments where they do fall asleep in the middle of their normal activities, and cataplexy, which I always want to call catalepsy, but it is. Cataplexy is a common symptom of narcolepsy, and this is actually the most specific symptom of the disorder, as it's unusual for cataplexy to exist as a symptom outside the presence of narcolepsy, and this involves an involuntary and sudden loss of muscle control. Although the person is awake, they are unable to move that you'll sometimes see it referenced in UH documents as being a loss of muscle tone as well. Narcoleptics may experience paralysis on either side of the sleep cycle, and sometimes they have really vivid hallucinations UH sometimes concurrent with this paralysis. It's not uncommon at all for any person to actually experience some level of sleep paralysis and really vivid imagery in their dreams. It's pretty normal for this to occur during the rem cycle of sleep. But whereas someone with a so called normal sleep cycle would hit RAM at about ninety minutes into sleep, somebody with narcilepsy hits RAM almost immediately when they have an episode of sudden sleep. So this rapid transition both entering and exiting sleep explains the symptoms of hallucinations and paralysis, and it's also not uncommon for the average person to experience sleep paralysis in some form when they don't transition smoothly from deep sleep to wakefulness or vice versa. I'm sure many of our listeners are like, I've had that happen. Uh, so have I. But for someone with a fairly regular sleep cycle, this really only happens occasionally, But for narc eileptics this is a frequent and persistent state of affairs. I think I remember one time that happening to me in my life, and it was scary, really, just the once once that I remember. Like I said, I've had insomnia and some sleep issues forever, so I have lots of instances of them, and I was actually way into my adult years where I realized like that I was not a freak like part of me thought there was something really mentally wrong with me, and I had never really talked to anybody about it until one of my friends was talking about her sleep paralysis and I was like, wait, other people have this, which is shame on me for not doing the research. So, despite sometimes dropping off to sleep during the day, narcileptics don't usually get any more sleep than the average person does in a twenty four hour cycle. And this is because even when a person with narcolepsy is in bed and able to frequently do the thing that might appear to some that their body is constantly trying to do. The quality of sleep that they get at that point is extremely poor. It's punctuated by frequent periods of wakefulness. And it's not uncommon for narcilepsy to be diagnosed in tandem with other sleep disorders like sleep paralysis and insomnia. I think that was the thing that tripped my really trigger the first time I learned about narcolepsi was that you could have narcolepsy and insomnia at the same time. Yeah. It's also sometimes really difficult for narcolepts to be diagnosed at all because most of the symptoms that are associated with it can also come from other issues. Yeah. I mean that's part of like sort of the tricky business of sleep science, right, is that I'm not getting good sleep is a common complaint for people with a lot of different melodies. Um And you know, because it can happen concurrently, like we just said, with insomnia, and in this case, it's the type of insomnia where they really don't have difficulty falling asleep, but they often wake up from sleep quite frequently. Um. But narcilepsy is actually pretty common, despite not always being diagnosed. It's estimated that about one and three thousand Americans have narcolepsy with cataplexy, and researchers believe that many more have non cataplexy narcilepsy. Those two are are uh different, They're categorized differently, and these numbers are only estimates because, as we said, uh, with many sleep disorders, many instances of narcilepsy go undiagnosed. So what we do know is that there's a pretty even split between men and women. It doesn't seem to present in any um particular racial population or culture any more than another. It's it's pretty fair in how it distributes, and it usually presents sometime in adolescence or early adulthood, although there are certainly cases of it happening in children and in people that are way past their early adulthood. Usually, cataplexy is the first symptom to present in about ten p of cases, and it's sometimes misdiagnosed as a caesuar disorder. For a lot more people, Excessive daytime sleepiness or e d S is the first symptom, and because many people are leading busy lives and cutting back on sleep to accommodate their to do list. It's really easy to chalk up e d s to just getting too little sleep, but it eventually can manifest into micro sleeps. So there's our brief periods of very sudden sleep, sometimes only lasting for a few seconds, during which the body just sort of goes into an autopilot mode. During micro micro sleep, a person might continue to perform the activity that he or she was engaged in when the sleep episode hit, but they're not usually aware of it and then have no recollection of it later. Yeah, and it's you know, sort of scary to think about because if you're driving a car, you could have a microsleep and you'll keep driving that car, but you won't be consciously aware of it. Uh. A lot of times people pass through that cataplexy stage where they are still aware before they doze off, but they can't do anything and then they're just in sleep really quickly. Uh. So there's some terrifying stuff to be had around it. Um. You know, for some people, there there are clinicians that will talk about their patients writing notes and they doze off and they keep writing their note. But of course it becomes scribbling scrawl, and it makes no sense. But their their body is still doing the movements, and it's still doing what it thinks is penmanship of some sort. But it's just nonsense. Uh. Before we get to the first appearance on record that we have, do you want to have a quick word from a sponsor, Let's do that. So while narcolepsy and other sleep just orders undoubtedly existed for some time before any record of them was set down, the first mention of a narcolepsy or an ecilepsy like situation that we know of is attributed to Dr Thomas Willis, and Willis, who was born in sixty one, is often referred to as the father of neuroscience. UH. He's most famous for his publication of Cerebri Anatomy Brain anatomy text that described the nervous system in a much more thorough and advanced way than any writing that had preceded it. And he really promoted the idea of taking a very methodical approach to brain analysis. And he actually suggested that some flawed techniques on the part of previous researchers had led to some incorrect conclusions regarding anatomy and specifically that of the brain and nervous system. While Willis didn't call the sleep condition, but he witnessed narcilepsy in his sixteen seventy two writing the Anima Rotorum, he described people who were likely to experience it this way, a sleepy disposition. Eat and drink well, go abroad, take care well enough of their domestic affairs. Yet whilst talking or walking or eating, yea their mouth, their mouths being full of meat, they shall nod, and, unless roused by others, fall fast asleep. And what's interesting is that Willis suggested in his notes again writing in sixteen seventy two, that caffeine might be a suitable treatment for this, and in fact, caffeine and other stimulants have been used in ourcilepsy treatment throughout clinical history. Then we have a gap before we see much more mention of this in the historical record, and it's a pretty large gap. Yeah, there are some mentions of narcalyptic type cases in the writings of several doctors between the Willis description and the late eighteen hundreds when a ecilepsy study re emerges with more information, but there aren't a lot. And even so it's into the eighteen hundreds before we really see them again. In eighteen twenty nine, Heinrich Bruno Schindler included a description of what sounds like an oarcilepsy and his publication Idiopathic Chronic Somnolence. Let's book contains twenty different sleep disorder cases and begins with one that was observed by doctor Johann Peter Frank, who was a prominent physician working in the late seventeen hundreds and early eighteen hundreds, and the case is laid out as follows. Peter Frank mentioned a chief huntsman in the Upland who had suffered from somnolence throughout eighty years his whole life. He could not withstand the irresistible sleepiness and fell asleep, even at table with the Prince, where he poured too much more too much into the wineglass while sleepy and stained the tablecloth. The son of the man was also afflicted with the same somnolence at the age of forty years. An eighteen thirty six account by Dr Richard Bright, who's known to many as the father of nephrology, also noted a seeming oarcalyptic condition and a patient and then Irish surgeon Robert James Graves mentioned in our Ecalyptic Case in his eighteen fifty one writing Observations on the Nature and Treatment of Various Diseases. Pathologic sleepiness is also been mentioned in the writing of French doctor Mr Calf in eighteen sixty two when he detailed a very sleepy patient, but notes made by doctor John Baptiste Edward Jellanu who will talk about it just a bit, suggest that Calf's patients may have actually been dealing with an obstructive sleep afia rather than narc eclepsy. Yeah. Calf's case involved a man who was forty seven years old, and this man had to resign from his job because his sleep urge was so great that he just could not do his duties effectively. And the patient was described with quote attitude detached, stupor mental sluggishness, persistent stoutness effect on overall health as well as being puffy. And there's no mention of cataplexy or sleep paralysis in this description, and modern researchers believed that in this case the patient probably was obese, as indicated by the description of his stoutness, and as no treatment save a stay at a SPA offered the man any relief. There's been some speculation in the sleep research community that he may have lost weight while he was the SPA, which can sometimes help those who have obstructive sleep apnea, so it may or may not qualify as an earcailepsy case. Calf's patient later had a traumatic experience and the research that Holly found didn't offer a clear indication of exactly what it was. Then he fell into a state of sexual addiction and alcoholism and he was treated for this by another doctor. Yeah, and then he kind of disappears from the record in terms of what what happened to him. And we're gonna kind of jump into another word from a sponsor kind of quickly, but that's because the next chunk is all kind of juicy, and it's the research of one man, and I want to keep it all together. So we are going to have that word from a sponsor of Tracy's down with that, Let's do it. So, uh, next we get to one of the gentleman who's really kind of uh masthead of this whole sleep disorder movement, in particularly narcolepsy, and that's Earl Friedrich Otto Westfall, and he was a German physician. He was born in eighteen thirty three in Berlin, and he followed his father in terms of his career choice when he went to medicine. His father was also a doctor, and Westfall studied medicine in schools throughout Europe. He eventually joined the Berlin Charite Hospital as a member of the smallpox team there, and a year later he actually made the switch from the smallpox ward to working with mentally ill patients, and he eventually became a professor of psychiatry in eighteen seventy four. Westpall is often cited for his work in agoraphobia, which he wrote about just extensively starting in eighteen seventy one. This is more than a century before agoraphobia would end up in the Diagnostic and Statistical Manual of Mental Disorders, which is the thing that's often used to sort of categorize different uh disorders. Yeah, you'll sometimes see those headlines of like this was added to the d s M, or this was taken out of the d s M, and that's that's where we're talking about. Uh. Westphall was also one of the first doctors to study homosexuality, but that term had not even been coined when he was doing his work, and he instead called same sex attraction quote the contrary sexual feeling, and that was indicating his assessment of it as a contradiction between the mind's desire and the body's anatomy, and he felt that as such it was a condition which should be cared for from a psychiatric standpoint rather than being dealt with through the legal system as a crime. In eighteen seventy seven, Westpall presented two different cases before the attendees of the Berlin Medical and Psychological Society meeting, and the first was about epilepsy. The second focused on a patient with cataplexy and his patient, who was a bookbinder named Alert, had experienced two different phenomena which Westpall discussed at length. First, he did not lose consciousness during these incidents of the loss of muscle control, so that's in line with what we've describe as catoplexy today. And second, this patient had persistent insomnia. So these uh, that was you've just listened to our first part where we kind of broke down what insomnia is. These are two very common elements of narcolepsi diagnoses. Taylor was first admitted to the Berlin Charity Hospital on July seventy one. The Bookbinder claimed that several months before he was admitted, he had a fit of anger, which caused him to become ill. He lost his job after a fight with a coworker, then got out for drinks, and then went home, where his wife yelled at him. At that point, he had a short episode of sixty to nineties seconds during which he couldn't speak, trembled, and had to sit down. And though he remained somewhat agitated throughout that evening, Alert reported that he slept well that night, but after this incident, even slight stimulation would cause another so called fit uh. The degree of muscle weakness that he would be struck with when these moments overtook him grew in severity as the attacks continued. Westpall was the first position to explore an ourcilepsy with the common accompanying cataplexy, and he also examined the possibility of some kind of genetic factor in cataplectic patients that it could be inherited. The mother of his patient in this case had a history of it. Throughout her life. Although hers had decreased in its severity as she got older, her symptoms didn't start to happen until she had an accident in which she was struck by a brick. However, and the patient in west Fall's case, while he primarily talks about cataplexy, also had sleep attacks, and these would happen Westall seemed to think as a result of the cataplexy, So these events would sometimes happen when the patient was quote strolling around quietly and aimlessly. Here's how Westpall describes Alert's episodes. I've had the opportunity to observe the attacks and the patient himself on repeated occasions. He had one of these attacks while I was engaged in conversation with him. While he was still speaking, one could see that a certain change had occurred in his face. Facial coloration is up, where eyelids lowered gradually, like those of a person falling asleep, during which the eyes roll upward. Then they opened again once or twice, seemingly with great effort, until they finally shut completely, whereupon the patient stopped speaking after murmuring something incomprehensible, his head sank down to his chest and his brow seemed forcefully knit. Small sporadic nostril contractions were observable, and the patient's appearance was that of a seated person asleep. After a short time, several minutes, the eyebrows relaxed, the patient raised his right arm a few times, he's stretching upward, and rubbed his eyes sleepily, like one awaking from slumber. The scene then repeated itself all over again, during which one could observe that, though apparently asleep, the patient hears is what if one addresses him, Since he nods in response to questions directed to him afterwards, he also knows everything that was said during the time. Yeah, and that's a little it different in that our modern research suggests that like people, right up to the point where they hit microsleep, they may have consciousness, but there is this gap in their recollection of what happens during these micro sleeps. So that's just a little different thing that I wanted to point out. Ailor's condition also caused him a little bit of trouble on occasion. There was one point where he was mistaken for being drunk while he was working as a porter and a policeman was called, and when he recovered from his attack, he of course became his normal self. He was completely uh cogent and aware, and he was able to explain that no, no, in fact, he had a medical condition. When Ailert had an attack, his eyes closed in voluntarily. They could only be opened with great effort if he was able to do so. He only saw bright light. He also reported not feeling tired before these attacks and described the pre event mental state as his mind being empty or wandering completely. No dizziness accompanied them. So remember west Ball is describing cataplexy at this point, and then he goes on to say that alert instances of sleep are an extension of the muscular condition. And while Westpall did not use the terms catoplexy or an ecilepsy in his presentation or in the related writings that he worked on afterwards, he was clearly describing the same symptoms. And as we said, his work also focused so much more on the cataplexy than the narcileptic sleep attacks. So while he was clearly onto the disorder, he didn't identify it as one unique condition unto itself quite yet. As for the lack of a name for what he had witnessed in his patient alert, Westpall wrote, one is faced with a predicament in attempting to attribute a name to the illness described above. It would be a simple matter to call these episodes epileptoid attacks as well, and I cannot object to the term if one wishes to lengthen the list of very varied conditions commonly called by that name. This does not advance our understanding it all, however, and the peculiarity of the attacks to which I need not add any further detail given the exhaustive description and above, persists nonetheless. And then, almost as a footnote, Westfall mentions another case he consulted on several years earlier, and it really is like a footnote. He goes on and on and on about Tailor, and then it's like two paragraphs on this one. And this is our trigger warning section. This is the case that we mentioned at the top of the episode that involves some unsettling content. We're not going into any details, and it will take us less than a minute to talk about it. So if you want to hop ahead, now is the time. So several years prior to his work with Ailort, Westball had been asked to collaborate in determining the mental state of a recently arrested criminal. The man who was named von Zastrow had raped and attempted to murder a young boy. Westwall had expected, based on the information that he had been given, to find that von Sastrow had epilepsy. None was indicated, but the prisoner did relay that he would often fall asleep in social situation, so that he had been mocked for doing so. Von Zastrows suspected that this constant drowsiness might be the result of his addiction to masturbation. Yeah, this caused some confusion, uh, you know about sort of being associated with uh, sexual deviance or something like that. But Westfall concludes his paper by talking about this tale, and he says that he was reminded of this case while working on the instance of you know, putting together his notes to relay alert's condition, and he writes, quote, one cannot deny that if additional observation should uncover a fairly common occurrence of such sleep attacks, then we are in the presence of a pathological manifestation of the nervous system, which, in the exploration of the mental condition of certain categories of criminals deserves no less consideration than epileptic or epileptoid attacks. It is evident that for the time being, nothing less than a disease of the central nervous system can be concluded, and that the question of responsibility in and of itself is not involved. So at this point, the medical community is really on the cusp of recognizing narcolepsy as an actual met cold condition, and that is where we're going to stop. Yeah, so we can get to part two, which is where the next big, uh huge part of identification and research comes in. Uh So hopefully you will not. I had to chuckle to myself as I was doing some of this research because I was thinking, I hope none of our listeners start hearing these symptoms and go, maybe I have not gilepsy the way that first year med students always do. I'm more when uh at the start, when we were talking about symptoms, I was like, this sounds a lot like sleep sleep apnia, And then we got to the part where we talked about sleep apnia and I was like, yeah, yeah, that's like we said, there are so many commonalities amongst different sleep disorders that it really does cost some trickiness in terms of identifying some of them. Particularly at this point in time, and even up until like the mid twentieth century when they were really developing identifying test procedures, it was easy for people to kind of get written off or misdiagnosed. And we'll talk about that some more in episode two. Now I have listener mail. Uh, this is a correction on our Gouty episode. We got a couple of these, and I will talk about it a little bit, uh, and I will laugh at myself. So, uh, this is from our listener, Kevin. He says, I wanted to provide you with a small but important to me correction regarding your comment comments on Gouty's podification. One of you mentioned that members of the society promoting Gouty's beatification quote already believed in Gouty's divinity. That was mine. It was a misspeak on my part. I made a quick search for this group and found what I believed is your website, but it was in Spanish, but I cannot read. I'm gonna jump ahead, uh. She he says. Furthermore, if they are Catholic, familiar with their faith, which I presume to be true, they would not believe that Gouty was divine. Individuals named a saint by the Catholic Church are considered to have had lives of heroic virtue and are to be considered examples of how to live a good life in accordance with God's will. The Holy Spirit of God is considered to have acted within these individuals. However, these individuals are not considered to be mine in the sense that they themselves are a God, are directly part of God, rather than the Holy Spirit inspired these individuals. We got a couple of these, one of which kind of accused me of having been raised with some sort of anti Catholic sentiment, and I had to chuckle a little bit. Not that it's not a valid comment and a valid correction to make, but because uh, I have a lot of relatives who I would have to apologize to if that were the case, because my mother Shute of the family is very devout Roman Catholic, and I was raised Catholic. This is just a case where I misspoke, you know, sometimes notes are getting written in the middle of the night. I certainly would not mean to um uh in any way mock or misrepresent anybody's religion, but it did strike me as funny that people thought I might be anti Catholic because I grew up very very well. I'm just I'm just forgetful and sometimes I just speak extemporariously and it's not always correct. Yeah, well, and sometimes always came to uh. They were worded in such a way that they sort of sounded like maybe you had never heard of Catholicism, which really did make me laugh, because I mean, I have like clergy in my family, like there's so it was a chuckle. And again, I don't mean to in any way downplay the import of their their feelings on the matter, but it's just the juxtaposition between what they thought might be going on and what my actual upbringing was was so completely at odds that it was a little bit comedic to me. That's all so apologies. If anybody was confused or dismayed by those comments, I'm telling you you can be raised Catholic and still say their own thing. 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