Narcolepsy, a relatively rare and poorly understood neurological condition, can be hard to diagnose. Julea Steiner was misdiagnosed for years before a sleep study helped doctors recognize her symptoms—excessive daytime sleepiness, vivid dreams, hallucinations, and mild cataplexy—as narcolepsy. Steiner is a sleep health advocate and assistant clinical professor and director of professional development at the University of North Carolina Gillings School of Global Public Health.
Steiner spoke with Sleep Review about narcolepsy and the informational website she hopes will spread awareness about the condition, which is sponsored by Jazz Pharmaceuticals. Check it out at www.morethantired.com
What’s the public perception of narcolepsy and how is the real condition different?
Julea Steiner (JS): Yeah, that is an excellent question.
I think the public perception of narcolepsy is really informed by these stereotypes and these comic portrayals that we see in movies. I think when people hear the term “narcolepsy,” they often envision somebody falling asleep in their dinner plate, or falling asleep while they’re walking across the street, and that is actually a myth. That really doesn’t happen in narcolepsy.
With narcolepsy, with the sleepiness of narcolepsy, which is a chronic neurologic disorder where the brain’s ability to control the sleep-wake cycle is impaired, what really happens—one of the symptoms is called “excessive daytime sleepiness.” That’s just this overwhelming all-consuming sleepiness that usually comes on gradually over a period of several minutes. So, you might feel just a heaviness descend, your eyes become very heavy, and you may feel a strong need to take a nap. But usually you can get to a place to take that nap. For me, I have narcolepsy, I’ve never fallen asleep in the middle of dinner, or in the middle of a conversation.
So, I think that that’s what people think of. I can talk a little bit about where that might come from, there’s another symptom that a lot of people with narcolepsy have, called “cataplexy.” That is a weakening of the muscles that occurs sometimes with strong emotions, like laughter, anger, surprise.
For me, my cataplexy’s very mild, so you might not even notice that I’m having it. I would tend to drop things a lot, my knees might slightly give out. But for other people, who have more severe cataplexy, that can be a partial or total body collapse. When that happens, the person’s muscles are paralyzed, so they can’t move, but they are fully conscious. They can hear everything that’s going on around them, they’re very aware. They’re not asleep. So I think that is where a little bit of that mix-up happens, in the public perception, and the real narcolepsy.
The real narcolepsy also has—it’s a very complex and frightening disorder for people that have it. A couple other symptoms that I want to mention: they are hypnagogic hallucinations, which are vivid, lifelike dreams. They can be very terrifying, you might feel like you’re being chased or attacked. They’re very real. They often occur with another symptom called “sleep paralysis,” and this is where you’re falling asleep or you’re waking up in the morning—similar to cataplexy, you might be able to hear what’s going on around you, and you might be having one of these hallucinations at the same time, but you can’t move, you can’t call out, sometimes you feel like you can’t breathe, so that’s very frightening.
Finally, I think a symptom of narcolepsy that a lot of people aren’t aware of is sleep disruptions. So it’s frequent nighttime awakening.
Again, with the public perception of narcolepsy, I think they think it’s kind of this luxurious thing, like, you can just sleep anywhere, anytime, and that it’s really enjoyable. But people with narcolepsy, it is a disorder of the sleep-wake cycle, so they’re often up a lot during the night. They might fall asleep easily, but then they’re waking up. The way that I describe it as a person with narcolepsy, you always feel like you’re—for me, trapped, a little bit, between being awake and asleep. You’re somewhere in the middle, and you feel that way day and night.
You suffered through a lot of misdiagnoses and were eventually diagnosed after a sleep study. Why is narcolepsy hard to diagnose and how can a sleep study pinpoint the condition?
JS: Yeah, I mean, I think—again, the public perception of narcolepsy makes it hard to recognize and diagnose. I think there’s not a lot of training for primary care providers, even some sleep specialists have a hard time recognizing all five symptoms of narcolepsy, so I think that’s one reason it can be hard to diagnose.
Another reason, people might feel like they’re—like, for me, for so many of these years—you know, I had a sense that something was wrong, I knew that I was more tired than other people, but I didn’t actually think of some of these symptoms as being symptoms of a medical condition, I just thought it was kind of how I was. So I think a lot of people maybe don’t seek help as soon as they should. I think those are a couple of reasons that it’s really hard to diagnose.
I think getting to a sleep specialist is really important, if you have—I think it’s also important to note you don’t have to have all five symptoms of narcolepsy. You may just have excessive daytime sleepiness, and you might still have narcolepsy. So getting to that sleep specialist, and getting to a sleep study, would be really critical if you felt like you were having any of the symptoms of narcolepsy.
And then another reason: the main symptom is being sleepy and being tired, and that can be a symptom of so many disorders, so I think when you’re describing that—And sometimes it doesn’t look like sleepiness, sometimes it feels like poor memory or concentration or hyperactivity, and people describe it and articulate it in different ways. I think there are just many many reasons it’s hard to diagnose.
What is that the sleep specialist looks for on your sleep study results?
JS: They look for how quickly you fall asleep, and then how quickly you go into REM sleep, or dream sleep. People with narcolepsy typically get there much more quickly than people who do not have narcolepsy. And then, again, with a sleep specialist and a neurologist, or whatever sort of physician you’re seeing, with your sleep study, they’re also really going to look at your clinical history and your symptoms, along with the results of that sleep study, to make your diagnosis.
What advice would you give to doctors about how to diagnose narcolepsy?
JS: First, I would tell them to educate themselves about narcolepsy, if they don’t know a lot about it. And, to ask some key questions. I knew I was very sleepy, we talked a lot about my sleepiness, but nobody ever asked me any questions about cataplexy, or my dreams. So I think just probing a little bit, just asking, if you have a patient that is just describing this sort of overwhelming sleepiness, maybe just touch on a couple of these other symptoms. I think it just takes a person asking a couple of the right questions to get closer to a diagnosis.
Once a person is diagnosed, what are some of the treatments options available?
JS: There are actually several treatment options available, and what I’ve found with narcolepsy is that it’s really individualized. I worked with my neurologist to come up with a treatment and lifestyle management plan, and I think I would encourage anyone with narcolepsy to do the same. But I think the really important message here is getting to that diagnosis, and being persistent about getting to that diagnosis. Because, you can’t even begin to think about treatment until you get a diagnosis.
Some of the pharmaceuticals that are available for this, for example Xyrem, which is manufactured by Jazz, has been noted as being a very expensive drug, although there was a generic version approved by the FDA a couple weeks ago. So I wonder if you could talk a little bit about the accessibility and affordability of some of the medications that might help people with narcolepsy, and how often they are or are not covered by insurance.
JS: Yeah, again, I don’t feel like that’s something that I can really speak to. I think my message here today is just to raise awareness about the symptoms. I lived with these symptoms for 26 years, and I was undiagnosed, and that’s a really long time to suffer. So I really see my role as raising awareness about these symptoms, getting this information out there, and hopefully helping other people reach a diagnosis.
To that end, can you talk a little bit about More Than Tired, that’s the website that you’re promoting?
JS: Sure, that’s right. So the website is morethantired.com. It is sponsored by Jazz Pharmaceuticals. It has a symptom screener, so of all the symptoms that I mentioned, you can kind of walk through those symptoms, see where you fall, and then there is a directory with sleep specialists. So if you do feel like you’re experiencing these symptoms of narcolepsy, then you would be able to find a sleep specialist in your area.
It sounds like those features are mainly designed for patients, or people who are concerned that they might have narcolepsy. Is there much on that website for physicians about how to recognize narcolepsy and what to do about a patient that comes to them with these symptoms?
JS: Yeah, I think so. I mean, it is a patient-centered website, there is the symptom screener, but absolutely a physician could receive just as much education as a patient in terms of recognizing the symptoms of narcolepsy.
Great, well thank you so much. Is there anything that you wanted to add today?
JS: I would just like to add that if anyone out there is experiencing any of the symptoms that I’ve talked about, even just one or two, you don’t have to have all five- just to educate yourself about narcolepsy, be persistent, advocate on your own behalf, and don’t give up on yourself. I don’t want anyone to suffer any longer than they have to.
Rose Rimler is associate editor of Sleep Review.
Very well written! Captures what it feels like to have narcolepsy, and corrects the many misconceptions people have about narcolepsy.
I think it’s just a tad bit irresponsible to say that the perception of narcolepsy is faulty based on her own physical symptoms. The same symptoms that she is asserting as “not how narcolepsy works” are the exact same symptoms are suffered for years before being officially diagnosed. I would be at work, sit down to eat for lunch with coworkers in the food court and literally doze off while eating. My coworkers would ask me if I was ok because they never saw anything like that before. At the time I just brushed it off and said “oh this just happens to me when I eat”. I would also drift off to sleep, not a weakening of the muscle which I get that as well but literally drifting off while driving. One of my sexes would catch me and snap me out of it. He would get mad at me for falling asleep while driving and I tried to explain to him that I couldn’t control it. Again at that time I didn’t know I had narcolepsy neither did he. As soon as I get in a car within minutes I would fall asleep even if the distance I was traveling wasn’t very far. Every holiday when it came time to watch the holiday movies after dinner I would literally fall asleep several times during the movie. It got to the point where during those times I would just go to sleep in the spare bedroom because I knew I would fall asleep while watching the movie and it was really embarrassing because no one knew what was wrong with me. Finally after being diagnosed my family understands what I’ve been telling them all along and that is I can’t control it. The sleepiness just creeps up on me and sometimes I really try to fight it when I feel it coming on especially the cataplexy but it’s nothing I can do. So again, I really didn’t appreciate this doctor coming on here and acting as if the stereotypical portrayal of narcolepsy isn’t real just because SHE never had those symptoms. It would be better for her to acknowledge that a very small percentage of folks who suffer from narcolepsy have those “stereotypical” symptoms rather than saying that’s not how narcolepsy works.
Very interesting. I wish all physicians could become more advised in this area. No telling how many patients fall through the cracks on being truly diagnosed with this condition. Thank you for this valuable information.
So much more than tired, Nightmare on Rem St. Often trapped inside my own paralysis prison. I knew I had N before I sought a sleep study. it happened like a thief in the night, the very week of 9/11
I think you are confusing a lot of people with Narcolepsy. You stated that falling asleep in plates and even walking across streets just doesn’t happen in Narcolepsy??? HUH? You added that for yourself you’ve never fallen asleep in the middle of dinner, or in the middle of a conversation. I think you are extremely lucky because most Narcoleptics that I have read about, or spoken to have those very complaints (symptoms) including myself. These symptoms are the most debilitating to a persons lifestyle and of course can be very dangerous. Am I missing something?
I have never fallen asleep in my dinner or crossing the road. What she is saying is that is caused by the cataplexy trait and not all narcoleptics have it full blown which is what makes that happen.Every Narcoleptic is different, no 2 are the same which makes it even harder for people to understand.Trust me I have been on Meds for nearly 25 years and have met loads of us and we are all different. Hollywood ain’t done me any favors in the way they have betrayed Narcolepsy that’s for sure.
Best piece I have every read in 25 years of reading everything I could get my hands on. I wish this was written 25 years ago when I found out at 19 I had Narcolepsy.
I was finally diagnosed with narcolepsy. I work at the Dept. of Health in Florida. They did their best to fire me, saying I was a poor employee even though I never missed a deadline, had anyone unhappy with my work and have won lots of national awards for my video work. While I am in theory protected by the ADA, I have been repeatedly told that regardless of my diagnosis, I can not sleep at work (as if it’s something I enjoy). For me, most times I just blank out. Often I’m not even aware it happened. My supervisor would get livid and tell me to go home. The situation is absurd. Even the EEOC person told me I cannot sleep. I try to explain that for me, it is just a blank-out. Usually my head doesn’t even move. I don’t dream as far as I know. One second I can be looking at my monitor, then suddenly I become alert again. They act like I curl up with a pillow and blanket. And in extreme cases, sometimes even when I have taken my medication, I just blank for a few minutes at most. Thank heaven I will be retiring this year. The lack of compassion is ridiculous. Another employee has epilepsy and they don’t tell her she can’t fall to the floor and convulse. For me this experience has been a nightmare made worse by managers who don’t care that I have almost zero control over this. One claims I am sleeping if I am just bent over reading something important. I take Nuvigil, which works, but has some side effects I don’t care for (nausea, irritability are just two). My supervisor has a hearing aid. You’d think he’d understand this is a neurological disability that I didn’t ask for. Good luck to all who have narcolepsy. I hope you work in a more compassionate place!
Thank you! Even on narcolepsy meds for 16 years I often struggle – it takes vigilance and self-discipline to maintain a strict sleep routine, and that helps me immensely. I sometimes start to get anxious before bedtime because I’m afraid I will not sleep well and the daytime ‘zone-outs’ or falling asleep will be worse the next day. Then I stay up too late because I’m anxious and it happens anyway. It’s self-defeating, but from what I understand that’s what happens with some insomniacs. Anyway, I’ve found that audio meditations with hypnosis are GREAT for these times. I’ve been using the ones on the audible channels lately. I fall asleep quickly and stay asleep, usually all night! As a result I have fewer narcolepsy episodes the following day if I do this consistently. I’m a trained psychotherapist and a skeptic, so I don’t usually buy in to things like hypnosis, but I’ve been amazed and wanted to share with others who may have this issue.
I have hypnogogic hallucinations and excessive daytime sleepiness. On a sleep latency test I fell asleep in less than 3 minutes 4 out of 5 times (and about 7 or 8 minutes the first of the five times). I was told I don’t have narcolepsy because although I fell asleep that quickly each time, I didn’t go into REM sleep. I wonder if that is an accurate diagnosis or if I do have narcolepsy despite the failure to go into REM sleep on the test. I often feel like if I don’t fall asleep right this second I’m going to die. Then I do fall asleep instantly. Could I have narcolepsy despite the REM results?
Most likely no. Going into REM shortly after falling asleep is basically what they are testing for in the MSLT. Narcoleptics will fall asleep within 5 minutes of laying down to nap, and within 10 minutes of falling asleep they will go into REM. I can even tell when I sleep every day that I go directly into REM a lot of the time.
Also, I by no means ever feel like if I don’t sleep I will die. It’s more like so overwhelming that my brain forces its self to sleep. It feels more like what I would describe feeling like as a child when you’re so sleepy and need a nap. Remember when as a kid you would be out with your parents sitting in the cart at the grocery or something kinda boring and fairy sedentary? Do you ever remember beginning to feel kinda like a nap because it wasn’t just so boring watching your parents do these tasks that were no fun to be involved in at all? Or even when you were on your way home, in the back of the car, and you all of a sudden feel mesmerized by riding in the back of the car and get tired. Now, if you can remember a time like that, do you ever remember trying to keep your eyes open because you know it’s time to be awake but you’re trying so hard and the drowsiness in your eyes is just too strong and bam you’re out… almost don’t even remember falling asleep! That’s what narcolepsy feels like… only not on occasion… every day. Those sleep spells always feel good falling into, and coming out of for the most part. The part that feels like death is functioning on a daily basis doing “normal” required life tasks and managing responsibilities only doing so on little to no rest. I’m irritable, tired, constantly ready for bed, unable to concentrate, feeling like everyone around me is moving and functioning with an extra battery than I have. That feels like death… because I have everything they do from the looks of it… but underneath it all, I don’t and I still have to find a way to fuctionon at that same pace.
So, over the summer of 2018 I was diagnosed with mild narcolepsy. During my sleep test I entered REM sleep more quickly and more often than normal people should. But it was really during the 5 nap test that I realized something was definitely not normal about my sleep.
On average, after a full night of sleep, I fell asleep after around 2-7 minutes, but only during one 30-minute nap did I enter REM sleep and even had sleep paralysis.
If not for that one time, I’m afraid I may not have been diagnosed with mild narcolepsy at all.
During my first year of University and even back in high school, I would often feel an overwhelming and all-consuming need to sleep, even if I was very interested in the lecture being taught or homework I was doing. Then when I would nod off, I would say it’s more similar to passing out and not even remembering when you fell asleep, even if you fight so hard to stay awake. It made it impossible to get my assignments done, made me look bad as a student, and in general I was concerned for my future career as well.
Now I take meds for narcolepsy, Nuvigil, and the difference in my life is quite literally like night and day. I would suggest if you feel the way you do to go back to the doctor and ask for a retest. Because it can be hellish going through every day like that.
Very well written article. I was diagnosed about three years ago. I am 53 so i went all those years just thinking I was tired and not getting enough sleep. I am still tired but at least I know why. Thankfully my “zone out” episodes seem not to be as frequent with the medication. Some days I feel almost what I assume to be normal, others I feel extra tired..even with hmthe meds. Going for a follow up next week. May be time to adjust the meds or try something different. The cost of the meds are ridiculous!
I sleepwalk, sleep talk, and sleep eat. I have dozed off on dates, at parties, etc. I think it may be related to my hypoglycemia. I wake up in the kitchen with my head in the refrigerator, eating. My mother would sleepwalk as child and my father would doze off in his chair and suddenly jump into the conversation with an inappropriate comment. I have done that. I was watching TV with a friend trying to stay awake and suddenly I said “How many times have YOU seen Star Wars?” Nobody was talking about star wars and she had no idea what I was talking about.
I have had narcolepsy since age 12 I’m now 66 I take18 desoxyn ,9 twice a day. I still feel like a freak. I use to take biphetamine 20 4x a day which I think made me as close to normal as I ever felt but they discontinued it in the 90s.Im so great ful that it’s getting noticed now .!!!
I saw three different sleep specialists who all dismissed my symptoms. I have a history of anxiety, so they all simply said that my sleep problems and excessive sleepiness were anxiety symptoms and told me to seek therapy (though my anxiety was already under very good control through medication). One sleep neurologist laughed at me and rolled her eyes when I told her how I was falling asleep constantly, but yet had horrible, disturbed nighttime sleep. Finally my fourth sleep specialist had sense to get a multi-night EEG and saw that my sleep latencies were under five minutes, I’d go into REM almost immediately, and the rest of my sleep was horribly fragmented. So, even sleep neurologists often don’t recognize narcolepsy or dismiss symptoms, particularly if you’ve ever had any sort of mood disorder in your past.
Absolutely, I’ve delt with doctors dismissing my concerns, being rude, or condescending towards me when I explain my symptoms and just tell me to get out of their office. This is very unfortunate and I don’t have an anxiety disorder but narcolepsy can absolutely cause anxiety. I have had periods of time where I have several attacks a day. I will pass out in class, in the library, and even outside on a bench after lunch and long lectures all day. I’m concerned for my safety and my academic performance. I hope doctors get better at recognizing and helping patients with narcolepsy. For everyone who suffers, keep your head up, advocate for yourself & hopefully you will find a good practitioner who can help you out.
I am now in high school recently got diagnosed with narcolepsy. I am positive I have at least four out of the five symptoms of narcolepsy. I have read that you can get the side affects of cataplexy later on after being diagnosed with narcolepsy. I am unsure if I have cataplexy or not, at least minor cataplexy with my narcolepsy. I notice my mouth always tends to be open but without me noticing or wanting it to be. I also have sudden and strong twitches. I always thought that cataplexy was very obvious to tell if you had and it was only serve attacks like completely falling on to the ground. Now reading about people who have minor cataplexy and looking back on old memories I am very unsure if I have the cataplexy symptom too, although I feel in my gut I at least have some minor and somewhat often movements that are because of cataplexy. I’ve always shrugged off these “irrelevant” symptoms, like cataplexy attacks because I think it’s just something I do or don’t always realize it myself. Not sure what to think about it, if I have cataplexy or not. I believe I have a minor version of the cataplexy part, although I know I have other very serious symptoms of narcolepsy. I can not find the right articles or videos that talk about small subtle signs that I may be used to but aren’t normal for someone who doesn’t have narcolepsy with cataplexy. Honestly I am confused and don’t know what to think. Do I have narcolepsy with cataplexy? I feel like I do but also am unsure.
I was recently diagnosed with type 2 after a sleep study/daytime nap study. I was hitting rem sleep in under a minute during four of the five studies that they did. I’ve struggled as far as I can remember with the abrupt excessive need to take a nap and inability to sleep for any length of time. I’m a nurse , and it has almost cost me my job, thankfully now I have protection with ADA and FMLA but I still worry. My biggest problem is that my fiancée doesn’t seem to understand that when I do fall asleep , to not wake me up. He is constantly waking me up because “it’s not an appropriate time to be sleeping or he wants me to move” then it takes me forever to fall back to sleep .
I am booked in to a sleep study after having an apnea test. The Dr I spoke with asked alot of questions about my sleep. I have always gone immediately into REM sleep and will sleep talk walk and even go outside. Even in school I would get in trouble for sleeping or zoning out. I have fallen asleep while driving which is extremely frightening. I have fallen asleep during sex and conversations. I have tried not to but it’s impossible and I haveno doubt the test will be positive for narcolepsy.
I have sleep apnea, have had heart surgery. I can sleep 12 to 15 hours a day. I have asked my doctor how can I feel good one minute and then it is like someone pulled the plug and can’t function. I fall asleep in my chair, is an effort to even move at times, all which is so frustrating. Granted I am 66 years old, but have been complaining about this for 3 years. I also have fibromyalgia. I am so tired of being tired all the time. Any suggestions would be greatly appreciated.
So Jazz Pharmaceuticals sponsors this website morethantired.com, and you brush off the question about Xyrem (made by Jazz pharmaceuticals)? Hmmmm isn’t that convenient?
I used to be on Xyrem years ago & it cost somewhere around $1500 a bottle…and I got 3 bottles a month…so that’s $4,500 A MONTH!
If I wasn’t on Medicaid…I would have NEVER been able to afford it. I take (generic) provigil now & have for years…& last time I checked…the price for a bottle was something like $800!
It’s disgusting how these drug companies prey on people’s suffering…they can charge any outrageous price because they know people are so desperate for relief that they will pay any price to get it.
When my Medicaid lapsed at one point…it was an absolute nightmare trying to get by each month…if I didn’t have my Mom to run down “coupons”/”charity”…I would’ve likely had no solutions…as I’m not nearly as resourceful as her…& it’s hard to get much done when you only wake up when everyone else is going to sleep & all the businesses are closed.
Anyways I’m not surprised that Jazz Pharmaceuticals wants to raise awareness for Narcolepsy…the more people diagnosed with narcolepsy…the more likely that people are prescribed Xyrem…and the more $ they make.
I’m sure the $ they spend on raising awareness for narcolepsy is a drop in the bucket compared to how much $ they’ll make when people are prescribed Xyrem once diagnosed.
I was diagnosed with Narcolepsy in my early 30’s. At the time I had insurance and was able to get all the tests and medication for it. I stayed on the medication for about 5 years then I lost my insurance. I had to go off the medicine and resorted to coffee/energy drinks/herbal supplements whatever helped me stay awake. I am 53 years old now and have saved to be able to go back to the dr for treatment. The records showing my initial diagnosis are gone and now I am afraid I will have to go through all the tests again in order to go back on the medication. Is there a way to be diagnosed without the high cost of sleep studies?
Great pre-nap, never napped, but still thinking about napping read! I love when someone shares their personal experience living with Narcolepsy. Especially one like this! It was clear, concise, and informative. Thank you!
my whole life I’ve had been tired. I have fallen through the cracks my doctors would say. I currently feel like my life has been a blurr because of alot of horrible things doctors would prescribe and pass me on. I was constantly tired never did good in school also dealing with anxiety disorder night terror my whole life. Iam 34 now and at the age of 32 I was told I have a TBI injury front of my head and also narcolepsy to add on. I never remembered stuff in my past or given any type of help for my problems. I was just told I was a lazy scumbag that will fail. ADD MAKES MY ANXIETY SKYROCKET AND TIREDNESS MAKES MY DEPRESSION AND ANXIETY SKYROCKET. I DONT DO ANYTHING BUT GET YELLED AT BY MY FAMILY MEMEBERS. WHAT SHOULDNI DO