Excessive Daytime Sleepiness And Narcolepsy

Interview with Michael Lacey, M.D.

Medical Director, Northside
Hospital Neurodiagnostic Laboratory
Medical Director, Neurotrials Medical Research Firm
Instructor, Northside Hospital School of Sleep Medicine Atlanta, GA

Conducted by Dan Rutz

Click here for the audio interview with Dr. Michael Lacey, M.D

In the first half of this interview, Dr. Michael Lacey explains the causes and consequences of Excessive Daytime Sleepiness emphasizing the importance of a good night's sleep to help recharge certain areas of the brain.

In the second half of the interview, Dr. Lacey discusses Narcolepsy, a rare, but potentially dangerous sleep disorder, including the symptoms, the procedure for diagnosing it, and the medications to treat it.

Excessive Daytime Sleepiness

DAN RUTZ: Before we get into narcolepsy specifically, let's talk in more general terms about the problem of...of lack of energy, of sleepiness during the day.

MICHAEL LACEY: Sure.

DAN RUTZ: I assume we're talking about something that a lot of people can identify with.

MICHAEL LACEY: Actually, a very common problem. Over a hundred million Americans are estimated to have some type of sleep abnormality at this point, most of which result in lack of decent, restorative, restful nighttime sleep, which ultimately translates into them being quite tired during the daytime.

DAN RUTZ: Do people tend to not have a good handle on this? I mean, do we make excuses for ourselves; do we tend to make the wrong kind of self-diagnosis?

MICHAEL LACEY: Well, I think people take sleep for granted. People have always just sort of assumed that sleep was a time that you weren't awake and that it was really not a very active stage of living. It was really more just kind of, just purely to rest when in fact what we know is that sleep is actually quite a dynamic time when a great many things are occurring that ultimately result in us recharging our batteries so to speak so that our energy level and effectiveness during the day is maximized.

DAN RUTZ: Can you in perhaps a simplistic way describe some of these changes that are important, especially with respect to the brain and how it is regrouping for the next day's stimulation?

MICHAEL LACEY: Sure. As you know, sleep is really brought on by a certain part of the brain sort of turning on if you will, that results in a whole different set of neurotransmitters being activated in the various stages of sleep so as to kind of reboot or recharge certain areas of the brain. And there are a lot of theoretical or a bit more esoteric things that are ascribed to it as well, such as with dreaming and how we work out some of our conflicts and subconscious things that we don't quite get to during the daytime. And all those are important for kind of in the end recharging our batteries so that we do have that type of daytime energy.

DAN RUTZ: And perhaps alleviating some stress?

MICHAEL LACEY: Absolutely.

DAN RUTZ: And so if we go through our days with feeling very much on edge, part of the reason at least might be for lack of restorative sleep.

MICHAEL LACEY: Absolutely. As well as the fact that sleep deprivation tends to amplify most types of stress-related syndromes as well as a great many medical type of syndromes, including diabetes, hypertension, risk of certain other medical conditions, such as heart attack and stroke.

DAN RUTZ: How would you help someone decide or evaluate as to whether or not they actually have a sleep problem or a wakelessness, a drowsiness problem worthy of intervention or at least taken seriously?

MICHAEL LACEY: Well, a lot of it has to do with that person's daytime routine and what's required. And what we do is we sit and talk with the people about what their energy level is like during their daytime activities, how effective are they at work, how much are they enjoying life, what's their energy for doing things that are the more fun parts of life, such as playing with their children, going to a ballgame, taking in a movie, spending time with their spouse, those sorts of things, as well as obviously asking them about how their performance at work is. Are they staying awake? Are they alert? Is their energy level good? Are they getting promotions? Are they feeling appreciated and effective at performing the tasks of their own job?

DAN RUTZ: Now everybody feels tired sometimes.

MICHAEL LACEY: That's correct. Everybody at one time or another works harder than should, stays up later than they should, and so forth. And so a little relative sleep deprivation I think is something we've all experienced, if not in our adult lives, then in school or studying for finals, that sort of thing. But most of us can catch up from that sort of deprivation fairly quickly because it tends to only be a night or two.

DAN RUTZ: Is it normal to feel more alert at certain times of day than others?

MICHAEL LACEY: Oh absolutely. For instance, it's a very common phenomena after somebody has a meal that an hour to an hour and a half later they'll hit kind of that lull time where they're a little tired and feel like they could really use a nap. And that can vary a little bit with the content of the meal and that sort of thing. But absolutely, it's a very normal type of response to kind of hit a period of time during the day where you feel like you just need to gear down for awhile.

DAN RUTZ: Are naps a good idea?

MICHAEL LACEY: Naps are a great idea, obviously taken within the context of whether you're able to or not. The whole point of a nap is to kind of catch up just for a brief period of time. And if people can safely nap for ten or fifteen minutes at a certain point in the day. There are actually studies, which show people are quite a bit more effective in the late afternoon and early evening in their functional level. The trick of it is that if people are napping too often or too long, then what happens is their nighttime sleep starts to suffer. And so that balance is a little bit different for every single person and you can't just prescribe in a general sense how much each person should be napping and apply it to everyone.

DAN RUTZ: But even a few minutes, a so-called catnap can be effective.

MICHAEL LACEY: Can be quite refreshing.

DAN RUTZ: Okay, let's talk next about when drowsiness becomes more than just an annoyance, but really something seriously wrong. When do you cross that line? How do you go about sizing someone up?

MICHAEL LACEY: Well, I think most of us feel that drowsiness becomes pathological when a person's normal routine or their normal level of effectiveness becomes compromised somehow. For instance, if someone is getting to the point where the quality of their time with their children is becoming compromised, if the quality of their work is becoming compromised, certainly if people are becoming overly drowsy and tending to fall asleep at inappropriate times, such as at their desk at work or in a meeting with other people, or worse yet, behind the wheel of a car. Then those sorts of situations are really a testament to the drowsiness becoming pathological.

DAN RUTZ: And what's the first thing that you might suggest to someone who presents that way?

MICHAEL LACEY: Well, the first thing we do is we try to ask them about their sleep because far and away, the most common cause for excessive drowsiness is poor sleep. And so what we'll do is we'll go into a person's sleep habits. And there is a concept called sleep hygiene, which actually has to do with how a person prepares themselves to sleep, how consistent their sleep time is, how the timing of their meals and perhaps exercise, how they gear down in the evening, relax a bit easing into sleep so that they're able to fall asleep more easily and get more normal restorative sleep.

Then we ask about the awakenings during the night. I mean most people wake up a time or two during the night to use the restroom or whatever, but there are people who wake up numerous times, not related to any specific type of stimulus or need to do something, and then they stay awake for long periods of time. And invariably what this does is it fragments their sleep and causes them to in effect be taking two steps forward, one step back with regard to their sleep. And so they may be in bed for eight hours but they're actually only getting five or five and a half hours of decent restful sleep.

DAN RUTZ: People come up with ways of coping with this with more or less success, one of which is to insist that they have to have one, two, three, or more glasses of...cups of something with caffeine to get them going the next day. Is that crutch well advised ever?

MICHAEL LACEY: Well, I think stimulants are a commonly employed method of increasing all of our efficiency level or kind of ratcheting ourself up more quickly in the morning. And I think when used responsibly and not overused, then something like a cup of coffee or hot tea or perhaps even a soft drink in the afternoon is not an altogether bad thing because it helps us get through or compensate for that little lull period. We really only start to worry about it when we see people depending on the use of those substances in order to maintain what ultimately winds up being a less efficient level of function for them.

DAN RUTZ: Could the same be true of over-the-counter medications that might promise alertness?

MICHAEL LACEY: Absolutely. We see this all the time with people using now these natural herbal sorts of substances that are really kind of natural forms of caffeine. And they are stimulant medications that are kind of in the guise of a natural substance. And many people are becoming more and more reliant on these supplements in order to maintain their level of effectiveness. But ultimately it still winds up being somewhat of a crutch.

DAN RUTZ: Can you get to the point where you've really dug yourself in pretty deep by relying on these things too much? Can you make a bad problem worse?

MICHAEL LACEY: Well, absolutely because many of these substances are in a certain sense habit forming. And people get used to these sorts of caffeinated or naturally occurring forms of caffeine. Then what happens is you have someone that not only do you have to figure out what's wrong with their sleep but in order to make their daytime a bit more normal, you have to figure out how to detoxify their system of these substances. Because if one stops or weans those kinds of things too quickly then you have a whole new set of problems including headaches and irritability and changes in personality and so forth.

DAN RUTZ: It sounds like most problems with drowsiness during the day can be attributed to habits and lifestyle issues that you can help people resolve. But certainly that doesn't explain everybody's problem, does it?

MICHAEL LACEY: Correct. Even though the majority of people have sleep problems or perhaps more accurately, excessive daytime sleepiness because of bad habits, there are a small subset of people who have bonafide significant sleep abnormalities.

Narcolepsy

DAN RUTZ: Let's talk about narcolepsy specifically. What is it? How common is it? Who gets it?

MICHAEL LACEY: Narcolepsy is a disease that is recognized now as causing excessive daytime sleepiness at inappropriate times. It really brings on what appear to an outsider to be a type of sleep attack where someone will suddenly become overwhelmingly drowsy or tired and fall asleep, almost no matter what they're doing, which in certain circumstances can be quite dangerous, as well as contributing to problems with work or home or whatever.

Narcolepsy peaks in the late teens and 20s in the people that are involved. It does have a familial component. There is a lot of research going on that suggests that there is some type of genetic linkage with narcolepsy. And you see this actually in some breeds of dog as well.

And it's characterized by several different symptoms. The most prominent one is the excessive sleepiness that we talked about and frequent sleep attacks. On a milder level what you actually can see is people that have literally hundreds of one- or two- second episodes, which are called microsleeps, that occur during the day that wind up causing a person in effect to be sort of in a fog or fugue state during much of their day, even if they never really completely fall into a full sleep or have a full sleep attack.

Another component of the narcolepsy syndrome is what's called cataplexy. And cataplexy, simply put, is a sudden loss of voluntary muscle tone. And that's brought on by usually some type of emotional response. It can be with laughter such as hearing a particularly funny joke. It can be with anger, rage. And what you see is that the person in milder forms has to steady themselves against a wall or against a railing. In more severe forms a person can literally crumple to the ground losing all voluntary muscle tone for a matter of seconds up to a minute or minute and a half.

DAN RUTZ: Some of these things sound as though they're fairly generalized to other possible pathologies as well, and especially the fogginess, the microsleepers that could be attributable, I guess in one extreme, poor attention skills and then another perhaps, silent ischemic attacks, something that could be a mini-stroke or not. How do you go about deciding what really is the culprit here?

MICHAEL LACEY: Well, the first thing that we have to do with anyone who presents with a type of sleep problem is you have to make sure that they have had a good, thorough general medical evaluation because there are a great many general medical conditions, as you've said, that can mimic this. There are a great many medications. There are a great many types of other disease processes, little transient ischemic attacks, as you've said, small seizures.

There are other conditions which cause excessive drowsiness that will also cause a person to have this sort of fog state but without some of the other hallmarks that we see with narcolepsy. And so, a good general thorough medical evaluation is always necessary as a first step.

DAN RUTZ: If you know what you're looking for, is the diagnosis fairly straightforward?

MICHAEL LACEY: It generally is. If you sit and go through a careful interview with someone who has already had the other medical considerations put aside by a good thorough exam and you find that the person is having these frequent episodes, if you get a history that there is cataplexy. There are a couple of other components as well, one of which is called sleep paralysis, where during kind of a twilight stage of sleep a person will feel as though their brain has woken up.

But yet their body doesn't quite respond yet and that's a very frightening thing for people to experience. It's not dangerous because it doesn't affect the involuntary muscles, such as breathing or your heart rate, that sort of thing. So, a person really isn't in any imminent danger as a direct health threat. But it's quite frightening.

And then lastly, one of the components is called hypnagogic hallucinations, which is simply during also the twilight stage of sleep either while falling asleep or waking up a person will experience what they perceive is either a very, very vivid unpleasant dream or else think that they hear or see things that in actuality aren't there, such as someone in the room, noises like someone's breaking in, animal sounds, a great variety of things which are also quite frightening.

DAN RUTZ: How common is this?

MICHAEL LACEY: Narcolepsy is not a real common illness. It's estimated to affect between one and two million people, which on the face of it sounds like a lot of people, but in a country of three hundred or three hundred and fifty million, that's not that common compared to other types of problems. And it certainly isn't one of the more common sleep disorders in a population where there's a hundred million people who have sleep problems.

(Editor's note: Estimates of the prevalence of Narcolepsy vary among sleep experts between .02-.16% (less than one percent); we believe the estimate of persons with Narcolepsy within the US is between 200 and 250 thousand persons. In 1996, the National Center on Sleep Disorders Research estimated that only 50,000 of the estimated 200,000 narcolepsy patients were actually diagnosed. Also the actual US population is 275 million as of 2000.)

DAN RUTZ: Is this essentially a bad news diagnosis? Is there anything we can do for these people or is it actually light at the end of the tunnel?

MICHAEL LACEY: Narcolepsy now is probably better treated than it's ever been. There are a multitude of medications that are generally very well tolerated medications that someone can use to almost compensate completely for the symptoms that we've been talking about, and really for all intents and purposes can give people their lives back. So it really is a condition where the proper diagnosis can result in someone actually having a great quality of life.

DAN RUTZ: What do the meds do?

MICHAEL LACEY: Well, the medication primarily that is used are types of variable forms of stimulant medications. And that's why a lot of times when you see someone who has narcolepsy, they've been sort of self-medicating themselves many times by taking No-Dose or excessive levels of caffeinated beverages, that sort of thing to give themselves stimulation that's required during the day to keep themselves as alert as they possibly can be. And the problem is that when a person self-medicates themself, the levels of the stimulant in their system at any given point in time are highly variable.

And so you have someone that has a roller coaster type of day where they'll have periods of time where they feel kind of agitated or wired and then other periods of time when really they are very close to falling asleep. And so the advantage of most of the medications is that taken on a regularly scheduled basis, they're able to maintain a much more consistent level of function for people who have this syndrome.

DAN RUTZ: Do you reach a point where you can be weaned from these medications or this really a chronic condition that one has to live with for the rest of their lives?

MICHAEL LACEY: There are many people who when they get older may outgrow the syndrome of narcolepsy. That's usually something that a person will start to notice because with many people who have narcolepsy you will see a type of end of dose phenomenon where as they get closer to the next time that they would be taking the medication, they'll start to bottom out a bit. And when you see someone who is outgrowing the condition what you'll actually see is they won't hit that lull time that they normally would have before. So, in many cases, you can either greatly decrease the dosage or discontinue it all together of some of the medications.

DAN RUTZ: Is this one area where things like exercise can be helpful, do you think, in helping people to get a degree of natural stimulation that might bridge some of the gaps? Or is narcolepsy so profound that really that isn't going to do it?

MICHAEL LACEY: Well, like most medical conditions, there's a great deal of variability of how it presents and people with milder forms of narcolepsy, no question, can do a great many compensatory things on their own and level of exercise, level of activity, and the endorphin release that accompanies that can help a person bridge the gap or sort of battle through those times when perhaps they otherwise might hit a lull. On the other hand, people with severe forms of narcolepsy, short of using medication, it pretty much doesn't matter what they try to do. It's the sudden intense desire to sleep can be completely overwhelming.

DAN RUTZ: You know, there might be a genetic component. Apparently there is with this. Does it favor genders? Is there any other characteristics that might predispose groups or individuals?

MICHAEL LACEY: It really has to do primarily with the...just the familial origin. I mean it's not something that strongly favors men versus women; it's not in one particular ethnic group. It just has to do with a particular family pattern. There's a bit of crossover with some other medical conditions. For instance, one of the genes in narcolepsy is also seen commonly in patients with multiple sclerosis, although those two don't tend to commonly occur together. And again, I think a lot of this points to the fact that we're really still kind of in our infancy in terms of figuring out what genetic markers are going to be the most useful ones for us.

DAN RUTZ: Well, it sounds like this might be one area where the genome project can actually contribute a great deal to the ultimate development of better therapies.

MICHAEL LACEY: Absolutely. Gene insertion therapy and gene modification therapy for conditions such as this could potentially be cures.

DAN RUTZ: We started talking a little earlier about the process of diagnosing narcolepsy and you mentioned the history being very important. Beyond that, what are the next steps in synching the diagnosis?

MICHAEL LACEY: Really the gold standard for diagnosing narcolepsy is a type of sleep study. And what we do is in order to make sure that there aren't other type of primary sleep disorders that may be mimicking narcolepsy, we have a person come to usually an accredited sleep lab and sleep overnight. And during that sleep we measure what their breathing is like, how often they awaken, how much they move around or how restless they are in order to make sure that we don't have some other of coexistent primary sleep problem like sleep apnea or that sort of thing. Most people with narcolepsy have somewhat interrupted or fragmented sleep. But what we're primarily trying to do is exclude other more serious types of sleep disorders.

After having done that overnight test, then the following day, we have a person take a series of four or five naps at two-hour intervals. Now most of us if...even if we're not terribly sleep deprived, can take a nap at some point during the day. It is highly unusual to be able to nap repetitively. And what you see with people with narcolepsy is that in a series of four or five naps, they will repetitively fall asleep in a pathologically short time frame, which for most of us is considered to be less than 10 minutes.

The other hallmark characteristic of narcolepsy compared to other primary sleep problems is that those people slip very quickly into REM or rapid eye movement dream stages of sleep and they do so repetitively. And if you see the combination of significant sleepiness or somnolence with the ability to fall asleep and that's combined with early onset REM or dream sleep in a repetitive fashion, then in all likelihood what you're dealing with is someone who has narcolepsy.

DAN RUTZ: That really takes a lot of the guesswork out of it. It sounds like you can make a very objective diagnosis here.

MICHAEL LACEY: Correct. That enables us with a very high degree of accuracy to exclude a great many other potentially co-existent or confounding types of diagnoses.

DAN RUTZ: I would imagine that this comes as a relief to people who may have been blaming themselves or others may be blaming them, saying what's the matter with you. And really you reach a point where you can tell this is something that's beyond your control, can't you?

MICHAEL LACEY: Absolutely. Most people with narcolepsy are actually very embarrassed. Many people with narcolepsy have not shared a lot of what's happening with them or how they feel with other people because they think that they'll be taken as crazy if they tell people that they wake up and feel like they're paralyzed or they have hallucinations about people being in the room with them. There's a substantial stigma that's associated with a great many of these symptoms that someone is often quite hesitant to mention to other people because they're afraid that people will think they have some type of psychological or psychiatric problem.

DAN RUTZ: Or if someone's nodding off in a business meeting, that would be taken as a rude gesture, I am sure, rather than perhaps as something that in this instance is beyond their control.

MICHAEL LACEY: Absolutely.