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Treatment Options for Narcolepsy
If you’re among the 70 million Americans who suffer from a sleep disorder, it’s important to know that an inability to get quality sleep not only impacts how you feel every day but also can seriously affect your overall health. Dr. Arun Agarwal discusses the causes, warning signs and treatment options available if you have been diagnosed with narcolepsy.
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Learn more about Arun Agarwal, MD
Arun Agarwal, MD
Dr. Arun Agarwal is the Medical Director of the St. Luke’s Cornwall Center for Sleep Medicine location in Fishkill, NY, which opened in 2017. He specializes in sleep medicine, pulmonology, critical care medicine, and internal medicine. He is board certified in all four categories. Dr. Agarwal has been a member of the Hudson Valley community since 1990 after completing his fellowship in pulmonary and critical care at New York Medical College. He completed his residency at Lincoln Hospital in the Bronx, and received his medical training at All India Institute of Medical Science in New Delhi.Learn more about Arun Agarwal, MD
Transcription:
Treatment Options for Narcolepsy
Melanie Cole (Host): If you are among the 70 million Americans who suffer from a sleep disorder, it’s important to know that an inability to get quality sleep not only impacts how you feel everyday but can also seriously affect your overall health. Today, we are talking about narcolepsy and my guest is Dr. Arun Agarwal. He’s the Medical Director for St. Luke’s Cornwall Hospital’s Center for Sleep Medicine, Fishkill. Dr. Agarwal, what is narcolepsy?
Arun Agarwal, MD, FCCP, FAASM (Guest): Narcolepsy is an illness where people who suffer from it have excessive sleepiness during – usually during the daytime and there can be associated symptoms that we can go into. But it’s really a sleep disorder of excessive sleepiness.
Host: Who gets narcolepsy? Who is at risk for it?
Dr. Agarwal: The most common age group is the teens, teen years from age 13 to about 18 or 19. That’s the largest group affected. And once affected of course, it is a lifelong illness. We do see a second group usually in their early 30s and it affects males and females equally.
Host: Wow, so it can start pretty young. Are there some early signs of it? Teenagers as you say, might be early affected but they also are tired all the time. They’re teenagers. So, what are some specific symptoms that would send a parent and say we need to go see a sleep specialist?
Dr. Agarwal: Well this sleepiness is much more than just feeling tired. This is just an uncontrollable urge to actually go to sleep. So, the person cannot be – there is no voluntary control over the sleepiness. Some of the associated symptoms – there is something called cataplexy, which is a temporary paralysis of a muscle group, usually that affects the knees, so some people may just buckle. These are sometimes precipitated by an emotion like laughter or a surprise. In children, sometimes rarely children can get affected. For some reason their jaws are affected more so they will just sort of look lost with open eyes and an open mouth. So, those are the other symptoms of narcolepsy.
As one gets older, there are other symptoms that can emerge, and they are usually at the beginning of the sleep or at the end of the sleep where some people will get vivid dreams even to the point of hallucinations and sometimes, they feel they cannot move like they are totally paralyzed. So, those are the other symptoms of narcolepsy.
Host: How dangerous can it be, if it’s left untreated?
Dr. Agarwal: It can be dangerous largely from road accidents. So, a person may get a cataplexy attack while they are driving and of course they will drive off the road into an accident. Other than that, it’s usually not dangerous, however, after having said that, people do have a lot of affliction in their life. They have – because of a lifelong illness and social problems, they get into depression, they lose their jobs. So, there’s a lot of morbidity associated with it. But as far as life and death is concerned; it’s really related to accidents.
Host: How is it diagnosed?
Dr. Agarwal: First of all, one needs to suspect it. If anybody comes to me with excessive sleepiness, I do need to remember that they may just truly have a problem rather than just dismiss it as oh, these are just teenagers who are feeling tired. We do sleep studies. Sleep studies are done overnight followed by a daytime study and there are some particular patterns or diagnostic patterns we see. Some people can be diagnosed by a spinal tap looking for a particular chemical that is lacking in their spinal tap causing this problem to begin with.
So, bottom line, there needs to be a proper index of suspicion followed by diagnostic tests such as sleep studies or CSF exam.
Host: You mentioned that it could be a lifelong problem. Speak about the treatments that are available and is this something that someone would have to then do for the rest of their lives?
Dr. Agarwal: Yes. I would explain the treatment – so first of all, it can effectively treated. It cannot be cured, but it can be effectively controlled so that the person affected can lead a near normal life. And I will divide up the treatments into two. One that is sort of basic and that is they need their nighttime sleep properly so one needs to sit down and make sure they have regular sleeping habits and environments conducive to an eight or nine hours sleep at night. And the second thing is very interesting. During the daytime, they can take what I call strategic naps, so people have particular times where they feel particularly sleepy so let’s say two o’clock. So, if they take a 20 or 30 minute nap at 1:30 or 1:00 p.m., then often this uncontrollable nap at two o’clock may not occur. So, those strategic naps are very useful in helping people.
Of course, alcohol for some strange reason increases these attacks a lot so alcohol does need to be avoided. Same is true for carbohydrate rich meals. A carbohydrate loading, those like a heavy rice meal or a heavy pasta meal or sugary drinks even precipitate these attacks so they should be avoided. Driving safety as we discussed needs to be discussed.
Other than that, the treatment really falls into three groups. One can use specific stimulants. You may have heard of methylphenidate, Ritalin. That used to be fairly common but those are addicting. So, the more modern ones are called modafinil or armodafinil, those are significantly less addicting and safer. So, stimulants are very popular.
Then there is another kind of medication. We really don’t know how it works. It’s called sodium oxybate, but it does work. And the third group is a very commonly drug used for antidepressants, the tricyclics and SSRI as they are called. They actually also help, not by their antidepressant activity, but they reduce a particular kind of sleep called REM sleep which is the basic problem in narcolepsy. So, in a nutshell, those are the treatments available.
Host: Then tell us about the lifestyle changes and you mentioned napping. Tell us what else you would like people to know about things that they can do in their life that can help them if they are on these medicational interventions as well.
Dr. Agarwal: I mentioned avoid alcohol, avoid sugary or carbohydrate rich meals so like big rice meals, big pasta meals, big bread meals, sugar drinks and they need to pay particular attention to their driving habits. I generally ask them not to drive any long distances, but keep their drives short. More importantly, strategic naps and regular nighttime habits are really conducive to proper control. These are the lifestyle changes. I think avoiding obesity is another one. For some reason unknown, people who get overweight have more attacks whether that is really linked to carbohydrate meals or not has never really been studied.
Host: Dr. Agarwal, are there some genes strongly associated with this disorder? Does it run in families? Tell us a little bit as we wrap up about the state of the science involving narcolepsy.
Dr. Agarwal: You are absolutely correct. There is a specific gene kind. It’s actually not a whole gene, we call it HLA so something that exists on a gene and by the way, one can look for it. But normal people can have the gene too. The theory is that some people have a genetic predisposition that is somehow related to this gene and then they get something else that is not clear what, but it turns the gene on, and that gene produces an immune response that destroys some particular cells in the brain that secrete a particular chemical called hypocretin and deficiency of that chemical is linked to the causation of narcolepsy.
So, because of this gene, it does tend to exist in families, but the inheritable component is not strong so one could have a large family of brothers and sisters and only one may be affected. In fact, that would be fair more common than more than one sibling affected.
Host: Give us your best advice please, for what red flags might crop up that you would say you know what, it’s time to see a sleep specialist and see what’s going on with a sleep disorder that someone might possibly have.
Dr. Agarwal: A young man or a young woman with excessive uncontrollable urges to sleep should get evaluated and especially if they have features of cataplexy like buckling of the knees or they feel they have at the onset of sleep or termination of sleep vivid dreams or paralysis attacks. Those are classical signs I would most definitely look for narcolepsy.
Host: Thank you so much Dr. Agarwal for coming on and explaining what this is. People have heard the term, but they don’t really know what it means. So, thank you for clarifying that for us today. This is Doc Talk presented by St. Luke’s Cornwall Hospital. For more information, please visit www.stlukescornwallhospital.org, that’s www.stlukescornwallhospital.org. I’m Melanie Cole. Thanks so much for tuning in.
Treatment Options for Narcolepsy
Melanie Cole (Host): If you are among the 70 million Americans who suffer from a sleep disorder, it’s important to know that an inability to get quality sleep not only impacts how you feel everyday but can also seriously affect your overall health. Today, we are talking about narcolepsy and my guest is Dr. Arun Agarwal. He’s the Medical Director for St. Luke’s Cornwall Hospital’s Center for Sleep Medicine, Fishkill. Dr. Agarwal, what is narcolepsy?
Arun Agarwal, MD, FCCP, FAASM (Guest): Narcolepsy is an illness where people who suffer from it have excessive sleepiness during – usually during the daytime and there can be associated symptoms that we can go into. But it’s really a sleep disorder of excessive sleepiness.
Host: Who gets narcolepsy? Who is at risk for it?
Dr. Agarwal: The most common age group is the teens, teen years from age 13 to about 18 or 19. That’s the largest group affected. And once affected of course, it is a lifelong illness. We do see a second group usually in their early 30s and it affects males and females equally.
Host: Wow, so it can start pretty young. Are there some early signs of it? Teenagers as you say, might be early affected but they also are tired all the time. They’re teenagers. So, what are some specific symptoms that would send a parent and say we need to go see a sleep specialist?
Dr. Agarwal: Well this sleepiness is much more than just feeling tired. This is just an uncontrollable urge to actually go to sleep. So, the person cannot be – there is no voluntary control over the sleepiness. Some of the associated symptoms – there is something called cataplexy, which is a temporary paralysis of a muscle group, usually that affects the knees, so some people may just buckle. These are sometimes precipitated by an emotion like laughter or a surprise. In children, sometimes rarely children can get affected. For some reason their jaws are affected more so they will just sort of look lost with open eyes and an open mouth. So, those are the other symptoms of narcolepsy.
As one gets older, there are other symptoms that can emerge, and they are usually at the beginning of the sleep or at the end of the sleep where some people will get vivid dreams even to the point of hallucinations and sometimes, they feel they cannot move like they are totally paralyzed. So, those are the other symptoms of narcolepsy.
Host: How dangerous can it be, if it’s left untreated?
Dr. Agarwal: It can be dangerous largely from road accidents. So, a person may get a cataplexy attack while they are driving and of course they will drive off the road into an accident. Other than that, it’s usually not dangerous, however, after having said that, people do have a lot of affliction in their life. They have – because of a lifelong illness and social problems, they get into depression, they lose their jobs. So, there’s a lot of morbidity associated with it. But as far as life and death is concerned; it’s really related to accidents.
Host: How is it diagnosed?
Dr. Agarwal: First of all, one needs to suspect it. If anybody comes to me with excessive sleepiness, I do need to remember that they may just truly have a problem rather than just dismiss it as oh, these are just teenagers who are feeling tired. We do sleep studies. Sleep studies are done overnight followed by a daytime study and there are some particular patterns or diagnostic patterns we see. Some people can be diagnosed by a spinal tap looking for a particular chemical that is lacking in their spinal tap causing this problem to begin with.
So, bottom line, there needs to be a proper index of suspicion followed by diagnostic tests such as sleep studies or CSF exam.
Host: You mentioned that it could be a lifelong problem. Speak about the treatments that are available and is this something that someone would have to then do for the rest of their lives?
Dr. Agarwal: Yes. I would explain the treatment – so first of all, it can effectively treated. It cannot be cured, but it can be effectively controlled so that the person affected can lead a near normal life. And I will divide up the treatments into two. One that is sort of basic and that is they need their nighttime sleep properly so one needs to sit down and make sure they have regular sleeping habits and environments conducive to an eight or nine hours sleep at night. And the second thing is very interesting. During the daytime, they can take what I call strategic naps, so people have particular times where they feel particularly sleepy so let’s say two o’clock. So, if they take a 20 or 30 minute nap at 1:30 or 1:00 p.m., then often this uncontrollable nap at two o’clock may not occur. So, those strategic naps are very useful in helping people.
Of course, alcohol for some strange reason increases these attacks a lot so alcohol does need to be avoided. Same is true for carbohydrate rich meals. A carbohydrate loading, those like a heavy rice meal or a heavy pasta meal or sugary drinks even precipitate these attacks so they should be avoided. Driving safety as we discussed needs to be discussed.
Other than that, the treatment really falls into three groups. One can use specific stimulants. You may have heard of methylphenidate, Ritalin. That used to be fairly common but those are addicting. So, the more modern ones are called modafinil or armodafinil, those are significantly less addicting and safer. So, stimulants are very popular.
Then there is another kind of medication. We really don’t know how it works. It’s called sodium oxybate, but it does work. And the third group is a very commonly drug used for antidepressants, the tricyclics and SSRI as they are called. They actually also help, not by their antidepressant activity, but they reduce a particular kind of sleep called REM sleep which is the basic problem in narcolepsy. So, in a nutshell, those are the treatments available.
Host: Then tell us about the lifestyle changes and you mentioned napping. Tell us what else you would like people to know about things that they can do in their life that can help them if they are on these medicational interventions as well.
Dr. Agarwal: I mentioned avoid alcohol, avoid sugary or carbohydrate rich meals so like big rice meals, big pasta meals, big bread meals, sugar drinks and they need to pay particular attention to their driving habits. I generally ask them not to drive any long distances, but keep their drives short. More importantly, strategic naps and regular nighttime habits are really conducive to proper control. These are the lifestyle changes. I think avoiding obesity is another one. For some reason unknown, people who get overweight have more attacks whether that is really linked to carbohydrate meals or not has never really been studied.
Host: Dr. Agarwal, are there some genes strongly associated with this disorder? Does it run in families? Tell us a little bit as we wrap up about the state of the science involving narcolepsy.
Dr. Agarwal: You are absolutely correct. There is a specific gene kind. It’s actually not a whole gene, we call it HLA so something that exists on a gene and by the way, one can look for it. But normal people can have the gene too. The theory is that some people have a genetic predisposition that is somehow related to this gene and then they get something else that is not clear what, but it turns the gene on, and that gene produces an immune response that destroys some particular cells in the brain that secrete a particular chemical called hypocretin and deficiency of that chemical is linked to the causation of narcolepsy.
So, because of this gene, it does tend to exist in families, but the inheritable component is not strong so one could have a large family of brothers and sisters and only one may be affected. In fact, that would be fair more common than more than one sibling affected.
Host: Give us your best advice please, for what red flags might crop up that you would say you know what, it’s time to see a sleep specialist and see what’s going on with a sleep disorder that someone might possibly have.
Dr. Agarwal: A young man or a young woman with excessive uncontrollable urges to sleep should get evaluated and especially if they have features of cataplexy like buckling of the knees or they feel they have at the onset of sleep or termination of sleep vivid dreams or paralysis attacks. Those are classical signs I would most definitely look for narcolepsy.
Host: Thank you so much Dr. Agarwal for coming on and explaining what this is. People have heard the term, but they don’t really know what it means. So, thank you for clarifying that for us today. This is Doc Talk presented by St. Luke’s Cornwall Hospital. For more information, please visit www.stlukescornwallhospital.org, that’s www.stlukescornwallhospital.org. I’m Melanie Cole. Thanks so much for tuning in.