Index Support Center Forums Treating Narcolepsy Cataplexy and now Narcolepsy around the corner?

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    Hi everyone!

    I am 30 years old and can not claim that I suffer from Narcolepsy even if I have my suspiciouns about some weak form of it that seems to intensify with time lately.

    One thing I am certain about on the other hand, is the cataplexy. It started about 4 years ago, at the age of 26. At first, it would trigger whenever I found something “hilariously funny” or even whenever I expected that reaction from someone else as a result from something I was about to say or do. The first few days these symptoms started showing, It was like if my legs turned into spaghetti and I was struggling real hard to regain control…. a few days in, simply every single muscle just lost it´s power and I fell flat to the ground whenever it would trigger. Before I got used to it and started putting a lot of focus in my daily life focusing on my emotions, trying to control them, this could some times happen 10 times a day and even more. Over the years, I´m not “allowing” myself into the situations, states of minds, where im threatened by it. But obviously it does still happen one or a few times every week, at the very least I find myself struggling/glitching in between an attack and some control, which is almost worst than loosing control completely. The triggering has also spread to cover a lot of emotions including anger, sadness and especially anything related to strong empathy. When I try to get someone to feel better or say something that really has an impact on them in a way you “feel”, I´m gone right away.

    Now about my sleeping…. I´ve had over 50 jobs in my so far pretty short life and lost most of them for one and the same reason, oversleeping… More than anyone else, I overslept more often than I managed to get in time. And it´s not because I am or was lazy, I just fall asleep really really easy. Now add to this that I´ve always had very vivid dreams, the first lucid dream I can remember occured already at the age of 5 or 6 (I was explaining to the 7 dwarves from snowwhite how they did only exist in my head and that they were not for real, and how sorry I was about it and that I probably won´t ever see them again)….

    Long story short, I many times wake up and fall alseep again without even realizing, continuing my daily agenda but IN A DREAM, only to wake up from this dream a bit later, realizing I´m still in bed and all, and at this point, I am already very late for work….

    Over the last years, a majority of my dreams are highly lucid and I am able to just lay down at any point of the day and either just fall asleep normally or trigger a lucid dream for fun, all this in less than a minute. On top of that, at least once a day, mostly twice, I suddenly loose all my energy and become extremely fatiqued, in a way where I feel I urgently have to find a place to lay down or I will just fall asleep right over my plate with food, standing at the bus station, or wherever I am, whatever I am doing, I know for certain that I will fall asleep whether I want to or not within the next cpl of minutes. The cataplexy atacks are frequent in this state and many times trigger from the extreme fatique alone somehow…..I have felt a sleep while standing, eating, working at the computer, in the middle of a conversation, even in the middle of my own sentences, in the passenger seat of a car…. Now I don´t know at what point it does count as Narcolepsy, but I am also aware of how rare it is with Cataplexy as a isolated phenomena, as it´s usually always connected to Narcolepsy.

    And as a last thing, I want to add Nicotine to all this…. I´ve been smoking for the last 10 years and decided to stop about 2 weeks ago. While quiting smoking, I have been using “snus” instead, swedish chewing tobacco basically. This morning I was out of it, and told myself I am done with both cigarettes and snus at this point, so I did not go to buy any new ones. I have since not been able to stay awake for more than 10-15 minutes at a time. I am EXTREMELY tired and only want to sleep all the time…. I´ve been going through some hard times over the last couple of years and at times not been able to afford cigarettes, and that led to the exact same result. I can go to bed now and sleep for two days, and many times I have. Even 3 or 4 days, with the exception of waking up for 30 mins to visit the toilet, eat something, going back to bed and then instantly continuing to sleep….

    I am looking for some answers…..or guidance, that I have not been able to get anywhere. People are not taking this seriously, when I say the word “cataplexy” to a doctor they basically excuse themselves for 2 minutes, google the word on their phone and then explain what it is to me and that it´s highly unlikely that I would have it…. I am 100% undiagnosed for any of this, and always felt it´s something I have to deal with myself in one way or another. But today when I googled “Nicotine Cataplexy” and “Nicotine Narcolepsy”, another piece of the puzzle fell into place for me and I feel this is a fight I have been fighting alone for too long. It has cost me too many lost relationships, friends, jobs, careers…. I am not getting anywhere and I don´t know where to go or what to do to have this properly checked up/confirmed/treated…

    With that said, thank you for reading this wall of text to whomever did so, I deeply appreciate any related comments really


    Hi and welcome to the forum! If you have cataplexy, you almost certainly have narcolepsy. Nicotine is a stimulant that can inhibit many symptoms of narcolepsy, including daytime sleepiness and cataplexy so it can make diagnosis more difficult. The fall on the floor type of cataplexy is rather rare. It’s usually just some weakness during emotional stimuli. Based on how often and how quickly you’re falling asleep, it’s almost a certainty you have a textbook case. Unfortunately there’s a lot of misinformation and most general physicians have a poor understanding of the condition, which is why historically the diagnostic lag has been over a decade.

    What I’d suggest is getting a referral to a sleep medicine specialist that treats people with narcolepsy. A regular sleep apnea clinic isn’t sufficient. If you don’t mind sharing your geographic location, someone might be able to make a recommendation for a good physician. If someone came into my sleep doctor and described what you have on here, I can guarantee you, he’d be doing the testing for narcolepsy in a heartbeat.


    I’m having some computer issues here so I’ll be brief and blunt.
    You most likely have N with C because you have described a classic text book case BUT you also won’t get the help you need without proof and that means taking the psg/mslt and it being pretty conclusive.
    Nicotine is a drug and, like any drug, you shouldn’t stop it cold turkey. I need you to read the “Nicotine Cheat Sheet” and the “Cannabis Cheat Sheet” under the category “Non Prescription (RX) Strategies”.
    Nicotine may be the only way that you can partially control your cataplexy and I would suggest vaping if at all possible.
    Gonna post this while I can.


    Thank you for the quick replies, it´s the first time I reach out about it really.
    I live in Sweden (In the “Malmö” area) which should be as good as it gets in regards of healthcare in general, but I have also been living for the last 3 years in Malta and just recently got back to sweden two weeks ago and am not yet up to date with what I have available nearby, but I will start looking into it right away. After all I found you guys, if there is a clinic such as you are describing anywhere near I should be able to find it. Any help is of course welcomed here too

    Regarding the cataplexy, it was “partial” really only a few days, after that I had friends and exgirlfriends panicking whenever they thought it might trigger since I really couldn´t even move a finger or blink with my eye. I´ve been tickled while in this “powerless” state, feeling, everything without being able to move at all, which was a terrible experience as the tickling itself felt just like it would at any other given time. It usually lasts anywhere between 5 to 15-20 seconds.

    As for the nicotine, I will read the links you posted, and just to clarify the severeness of today;

    I stopped smoking but instantly started replacing it with this Swedish “Snus”, almost like chewing tobacco you put under your lip. So I did not quit nicotine, just the smoking. However this snus main point for me was to ease the withdrawal symptoms to actually manage stop smoking for real this time, and it worked great for me. This morning when I was out of the “snus” however, I felt confident I could get rid of that too as it´s nothing I did plan on keeping up. I have now bought more and function normally again but it was a huge struggle to even finnish writing that initial post here without it.

    Thank you guys again! Feels really good to get some feedback by people who actually know a thing or two about thi


    @Pavel very happy to help! Believe it or not, 30 is not an uncommon age to get diagnosed because the symptoms are frequently overlooked. On the upside, if you get properly diagnosed and treated, you’ll likely feel a whole hell of a lot better. I’m not sure what treatments are available in your country besides modafinil but just that can be a complete game changer.

    If you’re looking to stop nicotine (you probably need to so it doesn’t mess up the testing), there are a few medications that can help, such as bupropion (which should help with sleepiness as well). Snus is less toxic than smoking but may not be ideal for stopping since it also causes cancer and can contain even more nicotine. The patches are pretty effective if they are available there.

    Your best bet for finding a good sleep medicine physician is probably finding a neurologist that specializes in sleep disorders. In the US at least, there’s generally two types of sleep specialists, pulmonologists and neurologists. Diagnosis is fairly straight forward once you find a find a physician that is familiar with the condition.

    Good luck and let us know if you need anything. Please let us know how it goes!


    Thank you again!

    I did some research on both the nicotine “cheat sheet” @ferret ; it made sense of a lot of things to me and I also @Jason did my research on how to get treatment/diagnos in sweden.

    There is no real clinics focused on narcolepsy/sleeping disorders, nerological clincs is the closest I get and there is some organisation that got put together after a few hundred kids developed narcolepsy as a direct effect of having been administrated the “swine flu-vaccine” in 2006 , but all in all I could find a total of two doctors all over sweden that seem to have some in depth expertise or knowledge about narcolepsy with/without cataplexy. I will make some calls on monday and see what can be done.

    As my symptoms intensified over the years, the explanation I was telling myself was something I always thought would be some kind of chronical depression …. I´ve been telling myself that I don´t wake up in the mornings because I´m depressed and would rather sleep than be awake, that I was hiding from the life I love because I was mentally sick and maybe that I deep inside felt I did not deserve to be alive, awake and live a joyful life. It was the only reasonable explanation for so many question marks in my life that I think it might have become a placebo effect that later on turned into real depression. At the same time, I´ve never even considered suicide or other similar extreme measures, so It still didn´t add upp. My family, employers and partners throughout times have always denied any talk about narcolepsy/cataplexy as things I am making up, excuses…. Especially my family are giving me a hard time about this, there is no condition unless I have it on paper, I´m simply nothing but a lazy failure…. It has gotten to the point of a identity crisis and real depression, questioning myself and slowly starting to identify me as a failure. At the same time I am really creative, super productive when I work and somewhat brilliant at whatever I do if I may say so myself. I´ve always been top of the class, loved to learn, super curious and strive to understand all and everyone, trying to grasp as many perspectives as possible constantly expanding an open mind full of understanding.

    These two things have unfortunately always collided, and at many points of my life I´ve been on the brink of great success, reaching life goals, but never been able to cross that finnish line no matter how close I´ve been. Because of the “failure” I apparently am ….. Getting a diagnosis is something I hope would greatly benefit my today really poor self esteem and mental health. I think I´m right, I think I understand many things, but at the end when it really matters, I always question myself in the complete absense of any kind of confirmation.
    From a healthy life style and more or less athlete level physique, I have during long periods of time completely replaced healthy food and water with energy drinks and aptite-killing cigarettes. Whenever under a heavy workload, smoking nonstop for days until the work is finnished and today I am really worried about my physical health after years of abusing my body with poor diet, too much sleep and to little productivity. Just reading that it might be very likely I actually have narcolepsy makes a huge difference for me. Just did the Epsworth test, ESS, scoring 22 where anything over 15 is really bad the way I interprate that test..

    (Edit: ESS score from 24 to 22)


    You are NOT a failure! Think of all that you have accomplished WITH A DISABILITY!
    Unfortunately, this is a diagnosis that is still unacceptable to family even when it’s written on paper.
    You answer only to yourself and your wellbeing.
    Jason is correct. To get a clean psg/mslt, the nicotine must be stopped (just like any other med) otherwise it will interfere with the results.
    You are in the very awkward position of needing to fall apart before you get help. Take it one step at a time. Find a Neurologist who specializes in sleep studies and get an appointment. Then you will have a starting point for what to do next.
    It’s a process but ya gotta start somewhere. We get it and we understand so just think of us as your surrogate family when you need to vent. We don’t judge. Whatever works for YOU!


    @pavel Sorry you’ve had a rough time. I and many of us can totally relate to your experience. Because narcolepsy is invisible, people often times get accused of being lazy, etc. It causes a lot of self disappointment.

    There’s overlap between the symptoms of depression and narcolepsy and depression is extremely common in people with narcolepsy. Often times people with narcolepsy get misdiagnosed as depressed. Untreated narcolepsy is a ticking time bomb for the development of depression because narcolepsy has a huge detrimental impact on quality of life. It causes work and relationship problems, which add to the problem.

    And yes, that Epworth sleep score indicates extremely severe sleepiness so you definitely need to get some sleep studies performed. I’m not surprised you weren’t able to find many places that specifically treat narcolepsy. It’s a rare condition so there’s virtually no one that specializes in it exclusively. You just want to make sure the sleep lab is able to diagnose it, which requires an overnight sleep study and then a daytime nap test called the MSLT. Most sleep specialists should be able to figure it out considering you have what sounds like a pretty classic case.

    While there’s no cure for narcolepsy, treatment can really be life changing. I think you just need to get the sleep tests booked. I doubt you’re going to have any trouble getting diagnosed.


    Want to say there is a ‘path’ that works for each of us, it’s tricky to find but one exist, trial and error, day to day, being attentive, focusing in when need be, distracting away when need be, eating right, eliminating allergies, learning about the disease and the terminology as well as especially others experiences.

    Similarities are all over the place in your story.
    Got my ‘Probable N w/ Definitive C’ dx from Mayo Clinic, along with a ‘idiopathic central apnea’ and ‘delayed sleep phase onset disorder’ at the age of 30.
    Cataplexy was my complaint and I only sought confirmation, I will not go into the horrid year I went through but I had to go extremely out of my way (16 hrs and thousands of $ I did not have) to Mayo Clinic for more expertise.

    As an infant, had 95%+ of Pancreas removed due to growth of islets creating too much insulin which cause Hypoglycemic Seizures for months; the doctors in my state thought I just had Epilepsy but seizures got worse, eventually a at 2 months old my parents drove me to Mayo Clinic where I was fixed, got very very lucky.
    With that all said and in my mind as a child, while being tickled in belly, pits or under feet, my arms would stop reacting and go entirely limp while odd sensations went throughout my body (attributed to laughing hard but it sure seemed odd). No one ever thought or said anything when I told them what I was feeling (or rather not feeling my arms), so I adjusted and ignored it.
    At 20 I began to awkwardly collapse from just laughing at home with my Mom and step Dad. It wasn’t till I was 28 that I really collapsed in front of a friend, but all of those years at home it happened regularly.
    The Cataplexy was and is so clear cut, but I couldn’t besides for recognize that laughing or sillyness was triggering it, really describe it. Basically, I just did what I’ve always done and just adjusted however I could.
    Finally though, and the night that I’d collapsed in front of a friend for the first time, being 28 years old, found an article online about Cataplexy.
    Game changer. My 20’s were RougH, even my mid to late teens were full of depression, it all got worse till around 32.
    At the time, late 20’s, I thought I was a good sleeper aside from insomnia if I ‘tried’ to sleep, I only go into bed when I know I’m gonna fall into sleep still. How I think and describe sleep today is so so different than I would have at age 28.
    I’ve learned a great deal over the past 10 years, trying to grasp my own situation and condition, I’m 38 now and improved my overall health more than I expected.
    I had so many other chronic health matters going on, physical and mental, but much of it aside from allergies tied back to this broken sleep, Narcolepsy. For years I skateboarded deep bowls knowing there was a risk, I still do!

    The main thing I think I can say is, Lifestyle adjustments can really benefit us, and may be one of the few or only real solid methods to. Yet, like with meds be attentive, always for positives outweighing negatives (side effects and overall). A step backwards can result in a step, or steps, forward/s. Meditation and reducing stresses, anxieties, drama in life, can and will help a lot. Being comfortable with what you have and deal with, is critical. You may have already figured out, but resisting/fighting Cataplexy amplifies, intensifies, prolongs it. Hope that I’m not being repetitive or sounding like some horn, nor thorn.

    Ever since I started to dive into it 10 years ago, I’m actually quite fascinated by this disease, I think living ‘neurotically healthy’ has done me wonders and so has the time spent reading online, interacting with others and even venting through art, and writing…

    Jason and Ferret give great advice.



    I just realized through this thread that yeah, it´s quite obvious im suffering from Narcolepsy…. The signs actually started long before the cataplexy, only I was somewhat oblivious to it. Increasing how much energy drinks I would drink, and whenever I would run out of cigarettes I panicked on a whole nother level than any other smoker I know would. The whispering colleuges situations “Is he really sleeping now?” were not uncommon and I am confident I will get the right diagnos this time around. With this time around, I have brought up the Cataplexy as a isolated symptom and even stood my ground that I absolutely not have any narcolepsy-related problems, it quickly got waved of as having to be something else, I didn´t even get sent to the neurologist at that time.

    Just reading my own words in this thread and looking at it from a less defensive perspective makes it pretty clear, mainly thanks to the amazing replies you guys seem to have put a lot of energy into. Thank you once again for all that support!

    @Sk8aplexy –
    I also think that everything in life happens for a reason and in one way or another, as long as you keep on moving, good things happen and the paths you end up on lead to something good or even better than where you´d end up not having the life´s struggles to deal with on the way. Your story inspires me, and I get the feeling that despite all that life has thrown at you, you live a meaningful much valueable life. Lifestyle adjustments due to misfortunate circumstances have made wonders for me after an accident I had at the age of 15 that almost left me paralyzed for life, falling on my had with such impact that my spine was compressed, 5 or 6 cms if I recall but the force luckily didn´t crack more than one of my discs(?) …. The crack went straight through a big nerve and all in all, it led to my working out, going to the gym, rebuilding my phisque in a way that led to that earlier mentioned “athlete-level” fitness.

    I am sure healthy lifestyle adjustments from a neurological point taking the narcolepsy in consideration could greatly improve my life in ways I can´t imagine.

    Regarding; ” You may have already figured out, but resisting/fighting Cataplexy amplifies, intensifies, prolongs it.”

    I am really happy you said it, I can relate to it now when you mentioned it, but did not think about before. Depending on situations, if they have been ockward and public, I have fought the cataplexy with all my power leading to almost spasmic reactions where I loose and regain the power in my muscles briefly for what feels like 50 times back and forth during a few seconds only. Something that obviously both feels and looks way worse than just falling down and getting up again after a brief moment. At other times, when alone or with people familiar with my “symptoms”, I tend to as quickly as possible sit down with my back towards a wall or just lay down on the ground willingly before the muscle power is lost completely, which as you state also makes the effects at least “smoother” so to speak. This is something I will have in mind and I will try to not fight it as furiously as I use to even in emberassing situations.

    Today I have the job of my dreams, all I need is a computer and I can literally make a months salary in 2 days, if I was productive with full focus 8 hours a day. It´s nothing I have been able to do very well and I am lucky to still have this opportunity, with my productivity level and the hours I get every day where I can fully focus, I just about manage to cover all my living costs/expenses in a months time and this would have been impossible for me with any other job taking how little effective time I manage to put into it. If I get the right help now and it leads to improvements, if I can break destructive routines, an unhealthy lifestyle, have more energy, more focus and be more productive, I am looking towards a potentially really bright future where I have all I need to keep on chasing childhood dreams I´ve never really been able to let go of. That gives me great motivation and I am looking forward to see what impact any coming treatments/medicine will have.

    Thank you everyone, I did not know how much I needed this and I am really happy I stumbled upon this forum. Maybe one day I´ll be the one contributing here in a way that will help other people in a similar situation of the one I am in, nothing would make me happier.

    All the best to all of you and @sk8 ; keep at the skateboarding showing that even when life throws the most odd challenges at you, there is not much that can take away something one is truly passionate about!


    @pavel I think I speak for everyone when I say how very happy to help we are and thank you very much for the kind words! Helping people like you get diagnosed, receive proper treatment and support is why we created this little project. I was in the same position as you years ago and the veterans on here like ferret, sk8 and many others helped guide me to through the process. It was a huge relief to have the support of this community and I’m forever grateful. I’m a firm believer we have to stick together and help each other. After all, not many people can relate to the condition.

    Getting diagnosed is the first step and while there’s no perfect treatment or cure, if you do all of the lifestyle recommendations and respond well to medication, many people can achieve around 80-90% treatment effectiveness. It usually takes some time to find the right combination of medications but we’re here to help if you need any. Usually people feel better pretty quickly. Please keep us posted on your progress and I hope you stick around.


    Alright so a lot of things have been going on in my mind over the last couple of days. Before I can take the MSLT tests It´s going to take quite some while, no shortcuts here in Sweden that I am aware of. First I need a referal from an ordinary doctor to get an appointment with a neurologist/neurofysiologist. I´ve been calling all day and at last managed to get a time booked with a normal doctor in about 6 weeks…. Hopefully that will give me the referal I need so I can meet the neurologist, which then will decide if he thinks I should go and do the MSLT, which then also will take some time. From the research I´ve done, they will monitor me on five different occurances where I have to fall asleep within 2 minutes at least three out of these five times to qualify for the “Narcolepsy” diagnos. And the REM sleep has to start instantly. I am a little bit worried about falling a sleep on command I have to say, normally it wouldn´t be a problem to fall asleep at any time of the day, but on command? It feels weird…. The REM part however is a walk in the park. All in all, I can´t see it happening earlier than in 2 months time….

    I´ve learned so much about myself in these days, so many things I have been blaming myself for things that now actually have reasonable explanations. And the instant REM part of narcolepsy, that I am even fascinated by!
    We have a different sleepcycle and jump straight to REM, normal people don´t…..And here I thought it was the same for everyone, only that I somehow had become a master in the art of lucid dreaming. Talk about fooling there 🙂

    But the time until I can actually get a diagnosis, its right now really tough. I´ve had my suspions but my mind has been in a defensive mode and I´ve been telling myself I absolutely do not have narcolepsy, that I only suffer from the cataplexy somehow. The past days have been like a revelation and I really don´t have anyone to talk to…my cure for depression has been to constantly restart my life, change enviroments, change jobs, change friends, jump from relationship to relationship, living of that “new change energy -boost” as much as possible. It has worked but at the loss of any close relationships the way people I grew up with have. I wan´t to talk about this, how it has affected me in my life, but also some of the things it has given me….. I think we live and learn in our dreams as well as in our waken state, and I have dreamt a LOT, something I am thankful for.

    However, even trying to talk to my family only causes extreme frustration from their side. They refuse to have any conversation with me about narcolepsy, “if it´s not on a paper, it doesn´t exist” ….
    I feel like it´s telling a suicidial person that he is not suicidal until a doctor writes it on a paper. It doesn´t make sense…. It´s extremely frustrating

    So sharing the feelings, the thoughts here, knowing that at least someone reads it, that someone can relate and that I won´t just be dismissed as If I was trying to do I don´t even know what…

    One thing that made me really happy today and that I wanted to share has to do with one of the effects for me with that instant REM sleep during daytime naps…Today I fell asleep with a speaker next to me, playing wonderful chillstep music that I really love. After the nap I was in a really good mood and went to the kitchen on the opposite side of the house. I realized the music was still just as loud and clear as when I was laying right next to the speaker in my bed. And then it hit me, “I am still sleeping!” I have always fantasized about how it would be if life was like a movie, having a invisible speaker floating above your head playing suitable music wherever you go, whatever you do. This was just like it! Upon realization, I went out the door, and everything was just so insanely beautiful. It´s really rainy, dark and cold outside, but in my dream the sun was shining, I was wearing only a T-shirt, and I just took a walk around the block enjoying the sun, knowing, but not caring, that I was still in my bed taking that nap. It was one out of many great experiences I´ve had while sleeping, only today I understood it in a different way. How do you even tell someone a story like that without sounding absolutely crazy? I want to, I think the best experiences are the ones you can share, but I don´t think I can…. I´m forced to just shut my mouth about anything narcolepsy/sleep/dream related for two months before I get it on paper and just maybe at that point, I will get some acceptance from someone that means a lot to me. But to be honest I doub´t even that will make a difference….. The only thing that has made any difference at all lately, was finding this forum.

    Sorry for this enourmus wall of text that maybe doesn´t really add anything to anyone, but without this ventilation I would explode on the inside. Having written this alone makes me feel a lot better than I did 20 minutes ago.

    I am now going to see if I can find other experiences people have been sharing, surely I will stumble upon a few in this forum, and I am much looking forward to read it!


    Keep writing Pavel!
    There are a couple of down to earth facts that I want to share with you. Cataplexy trumps the psg/mslt. IF you take a witness to your cataplexy with you to your Doctor’s appointment it may make the Doctor more flexible. I took my hubby and, wow, did that expedite things. Or you can have someone take a video of you experiencing cataplexy and that is VERY diagnostic. Everyone’s got a cell phone glued to their hands these days.
    You can’t just have an mslt… the psg must happen the night before. Both have to be booked BUT, if there is any sign of sleep apnea, then the mslt will be cancelled and the apnea dealt with first. It doesn’t mean you don’t have narcolepsy because you can have both. It just means that the apnea has to be controlled first.
    Carry on dreamin’.


    Hi everyone. I’ve been taking xyrem for a few yrs now for my narcolepsy. It seems to not be working as well. What are some other sleep meds you guys take??

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