Narcolepsy or cataplexy anyone?

Are you ready for more research via social media? :)

I've heard this too many times now to ignore it. Do you or your kids have a diagnosis of cataplexy and/or narcolepsy?

Thank you in advance! We'll get to the bottom of this!

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Hi Spdytalk,

This paralysis that we get while supine, along with the inability to speak may be neurogenic shock due to compression of our vegas nerve in that position. ( Did you see The Driscoll Theory - Part 2? Lots of good pics in there to explain it). This is EXTREMELY common, but is not sleep paralysis (which was my first thought, too, when it happened to me).

Part 2 is still at 99 cents through my website. Check it out!

:) Diana

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Lorrie, her MDs dx'd cataplexy. But your distinction is correct. Her first episode was while on the phone; the last one was getting into her car .... which became a 911 call since she coukdn't talk and explain to strangers that she was probably okay.

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Hi Dr Diana, yes I have read part I of your theory and am now slowly going thru part 2--when i joined this group, all I had any knowledge about was narcolepsy/cataplexy and the sometimes accompanying phenomena like sleep paralysis and hypnogogic/hypnopompic hallucinations--so when I first read posts about these nighttime episodes I thought maybe they were sleep paralysis--however, the more I read, the more it is clear that these nighttime episodes of vasovagal paralysis or syncope (or whichever terms you want to use! there are a lot of terms--neurocardiogenic paralysis/shock) it seems very clear that what is being described by people here is not sleep paralysis at all, as you say. Since the cause of narcolepsy/cataplexy and other related symptoms remains not known (there are theories but the cause is not definitely known yet), and the causes of these other phenomena are not proven so far, it gets terribly confusing and difficult to sort it all out. In your experience would you say it is always true that when someone has sleep paralysis it is described as waking up and finding that you cannot move at all and are literally paralyzed, but with no other symptoms described, whereas with nighttime neurocardiogenic (vasovagal?) paralysis/syncope there seem to be other symptoms experienced at the same time? An article whose link IceLizard posted in another discussion described subjects in a study of nighttime vasovagal syncope as sometimes waking up with nausea and feelings of having to have a bowel movement (both vasovagal symptoms) followed by syncope as well as convulsive movements in some cases. (I am sure there are other symptoms I am forgetting--just writing what I remember). Would love to understand this stuff better!

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I get episodes where all of the sudden my face feels "way too weak to use expression." My face gets very heavy and tired. I have brought this to several doctors attention and they just look at me like I am crazy. I also lose the ability to speak- way more frequently. I will not even be able to get words out of my mouth to explain why I can't talk anymore. Can this be cataplexy?

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Hi Mattiesmommie, your symptoms do sound like something that needs to be explored by a specialist, probably a neurologist...is it only your face that is involved when this happens or are other parts or your body weak/not normal at the same time? Sounds like could be cataplexy the way cat. is described online, but think it could be other things as well that only a specialist can differentiate. It is hard to get doctors to pay attention when you go to them "looking fine" and tell them about something unusual that happens to you/especially if you are female!....but you should persist with it, even if the doctor acts like that--they shouldn't even though they often do--it is terribly unprofessional of them.

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Hi I am not diagnosed with cataplexy but after reading several stories on peoples experiences I do believe that this is what has been ailing me for over 14 years. It is crazy to say that I feel relieved that I am not alone. I went to the doctors 4-5 times over the years explaining my episodes and everytime I get the same look. They could not understand what I was going through unless they could actually see it. I just gave up and figured that it was just something that happens to me. Laughter is one of my triggers I know that as a fact because I lose my abilty to hold something if I am laughing really hard. I usually put my face down because I feel that my face must look distorted. I think that sugar might be of my triggers also because if I consume a good amount I have what to me felt like a mini seizure. I loose the ability to focus, my head drops down and my speech becomes slurred. To anyone who passes by while I am having an episode thinks that I am falling asleep. Once the episode passes I feel rested with a burst of energy. This has happened to me in a bar in which someone asked my friend if I was doped up. I realize that if I am tired I may have an episode. Oddly the side to side movement of my eyes while reading can trigger an episode. If I have been upset crying that also will trigger an episode. I had a sleep study where I was diagnosed with sleep apnea. I have always been a night person so I am up all hours of the night with mini maps that last 30- 45 min sometimes longer. I realize that my primetime to sleep is from 6- 10 in the morning. I sometimes thought that it was because during my mini naps I would have vivid dreams that would freak me out so I felt safer to fall asleep during the morning hours. I am known to fall asleep anywhere. I have to always be stimulated if not I am nodding off. I used to work 3rd shift stocking. I would fall asleep with a box in my hand standing up. I would walk to other departments without even knowing that I fell asleep. I blame that on extreme exhaustion and monotony. I can't tolerate monotonous movement, I will fall asleep. But what baffled me the most was the episodes. I am so glad that I can now go to the doctors and give them information on cataplexy and let them know that this is what I been trying to explain to them all these years.

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My mom was diagnosed with narcolepsy w/cataplexy at the age of 28. She is 67 and has needed to nap about an hour 2-3 times a day and is up a good portion of the night for at least 25 years. Prior to that she needed to nap once a day. She was diagnosed after nearly dozing off while driving! Her cataplexy episodes have become less frequent with age. She would virtually collapse from a good laugh :( She also has frequent vivid dreams.

She has struggled her whole life getting people to understand what narcolepsy is and how she is affected by it. Sound familiar? Even my father, her mother and sister would often get annoyed by her need to nap, especially when she was younger. Now that she is older there is more understanding.

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For those of you with narcolepsy, when you say sudden onset with no warning, what exactly do you mean? Do you just feel tired all of a sudden and fall asleep irresistibly?

I have been having problems recently, but I am not sure what direction to take. I have ideopathic hypoglycemia. I would have these episodes where I would feel very cold, often with goosebumps all over, sometimes this is followed by a quick onset of extreme drowiness or just nodding off. I will sometimes do this while working on something boring on the computer and I will just keep clicking on the trackball. I don't usually wake up tired, unless I go to bed too late. I was waking up in the middle of the night freezing cold and covered with goosebumps. I thought it was menopause, but my doc said my blood sugar was dropping during the night. So I have started eating some peanut butter before bed and that has pretty much resolved.

As for the daytime sleepiness and goosebumps, I check my BS and when it happens my BS is all over the charts, so I am not sure that it is related. It seems to happen most often when I am doing something boring and I am relaxed. I have always also had a problem with road hypnosis, mostly over long distances, I will pull over and take a 15-30 min nap if necessary.

Like I said, my real question is: what is the onset like?

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I don't realize that I'm sleeping/napping during the day. An example would be driving down the highway on autopilot, when you suddenly realize that your exit is coming up, but you don't remember the drive. Another example would be while taking notes in a meeting, you continue to write while napping, but your handwriting becomes illegibile and you don't remember what anyone said.

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Hi Bcksbest,

isn't it amazing that you could have cataplexy for so many yrs, tell doctors your classic symptoms, and no one got it? wow. I wanted to tell you how interesting I find your sleep pattern since I have the same exact thing about having my best quality sleep always occurring between the hours of 6a and 10 a.m. Although I have never had any symptoms of cataplexy, I do have narcolepsy and like you, can fall asleep anyplace/anytime. This is pretty typical of narcolepsy, but of course someone who didn't get enough sleep might do the same thing...sometimes it's a matter of degree and looking at the whole picture. When my sleep attacks got more and more numerous, occurring no matter how well rested I was, and began to happen when I was driving, it was clear that something was really wrong. And since you do pretty clearly have cataplexy, then it seems like you pretty much surely must have narcolepsy. The good news is that certain stimulants that are prescribed to treat narcolepsy do work for many people. I first was put on provigil which just didn't work for me...finally I was put on adderall, which does help me to a certain extent...enough that I can safely drive for 30-45 minutes and be safe/not at risk to fall asleep behind the wheel. At this point, if I don't take my adderall, my whole day will be spent in a foggy sleepy state, where I have to nap on and off the entire day. Not good for functioning. The hard part of getting appropriate treatment is getting the diagnosis officially so that a doctor can responsibly prescribe these meds...although provigil is also prescribed for shift work sleep disorder, which I don't think needs testing to prove. If you are interested in treatment, your best bet would be to make an appointment to see a sleep disorders specialist (often a pulmonologist or neurologist and usually associated with a hospital that has sleep lab testing)--because of the nature of your symptoms, would be best for you to actually be seen by a sleep specialist before any tests are ordered--I say this because a lot of internists these days are going ahead and ordering overnight sleep lab testing (Polysomnograms) for their pts without the pt being seen by the sleep specialist. Maybe ok for something like uncomplicated obstructive sleep apnea, but not for narcolepsy/cataplexy.

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Thanks for the feedback LorrieL. The heavy face thing actually has happened just recently again a couple times. I feel weak and tired all over, but most noticeably in my face. Now reading what others have posted here, I have had times where I am driving and suddenly realize I don't remember the drive, and it has freaked me out that I apparently zoned out that badly. Goodness, I guess I will add a neurologist to my list of specialists I believe I need to see. And I absolutely agree with "It is hard to get doctors to pay attention when you go to them "looking fine" and tell them about something unusual that happens to you/especially if you are female!"

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I believe I have narcolepsy or something like it. I have very mild sleep apnea and then my sleep doc scheduled me for a nap study because I have many symptoms of narcolepsy but my insurance (Tricare military insurance) denied coverage of it so I have to wait on getting it approved. I actually kind of hope I do have narcolepsy as then I can be treated and hopefully be less sleepy all the time! It's really messing with my life and has been for years! If I get the nap test done I'll let you know what my results are! =]

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Thanks LorrieL, I will look into seeing a sleep disorder specialist. What you stated is correct. I did get a sleep study but didn't speak to any specialist. I don't think I mention before but I realize that several people have mention is driving. I drive to NY which is about an hour and half from where I live every other weekend. Now as long as I take a little nap or feeling this rush of energy I can make it there with no problem. But there has been sometimes where I don't remember the drive at all. As if the car drove by itself or aliens picked my car up and placed it in NY, lol. I always drive at night because I feel that is my prime time. When I am alert the most and to avoid traffic. Bumper to bumper traffic has cause me to feel extremely exhausted. I also pray at the beginning of all my rode trips and do believe that its the grace of God that gets me to my destination safely especially the days that I can't remember my trip at all. One thing about living like this is that my whole life seems to have passed me by. My children are getting older and so am I. I am considered morbidly obese and I feel partly its because I am to tired to do anything. I use to go to the gym and fall asleep on the treadmill to many times that embarrassment has kept me away. I hope that I can be given some type of medicine to at least keep me up during the day. People who do not have these issues do not understand. I have been laughed at by those who see me fall asleep. There have been those who take pictures as if its some type of joke. My children are embarrassed of me because they know I will fall asleep. Does anyone know if narcolepsy/ cataplexy can be cured if I lose weight just like sleep apnea??

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There is no cure, just treatment. I take a stimulant during the day for energy, and take Xyrem at night to reset my REM sleep pattern .

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Hi Lorrie L, and everyone else. I am no expert on cataplexy, but my understanding is that it is much like the "fainting goats" -- have you heard of them? They are wide awake, as we are. When we are triggered by almost any emotion, we can collapse, which is obviously HORRIBLE, especially for kids/teens who must learn to avoid all emotions if they are not responsive to medications.

The paralysis and inability to speak at about the time we fall asleep sounds like neurogenic shock secondary to vagus nerve compression. That is easy to test for my having someone who knows what to do ahead of time -- immediately check your BP and heart rate. It should be rock bottom (not true for cataplexy). If so, sit you up and stimulate you, give you lots of fluid, caffeine, and if you decide to do it, a call to 911 may be in order. They can help get everything back up in no time, and likely won't have to take you to the hospital. (Please check with your doctors. Disclaimers, disclaimers).

Some of us may have a narcolepsy-like presentation (BEEN THERE). We fall asleep at the drop of a hat, and I became horribly hypothermic at the same time. I was able to get rid of that, thank Heavens, and that is part of my next two studies coming up. I believe I hit on the cause, and reversed it -- get this -- in TWO DAYS. After 6 months where I couldn't stay awake!! Period.

So many similar conditions, but slightly different presentations... Heavens.

Hang in, my friends,
:) Diana

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Hi SueRN,
You're right -- there ARE no studies with us on these conditions, so I'M GOING TO START ONE! It's too prevalent to ignore in our population.

This is one of the GREAT things about social media and science -- we are able to find links that many have overlooked, and Heaven knows, we need more studies on this.

No studies does not mean no correlation, of course. Hence the importance of us all comparing notes and our symptoms, testing etc.

Fascinating discussion,
:) Diana

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Hi theschema....

My son was diagnosed with narcolepsy after his sleep study, both done by our neurologist. Tricare covered both the study and the appointment with the neurologist. We had to switch neurologists but are still covered (the docs are both listed as tricare providers). I hope you are able to convince tricare to let you get treatment (and shouldn't have to convince them, that stinks). Good luck!

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Hi Dr Diana, yes now that I have read so many different posts in many different discussions and read your theories, I can see that what may at first appear similar can be VERY different, like sleep paralysis and cataplexy vs. neurocardiogenic shock. One thing that I am finding particularly fascinating is that it seems like even tho' these things are so different, it does seem possible that all of the above occur more often than usual in people with EDS. The one thing I can think of that they all have in common is that the exact etiology of each one is not known for sure! I have always been especially interested in very complex medical puzzles, but had no idea that EDS was one until I began to read discussions on this site. I especially appreciate the way you are going about investigating ideas and your theories, i.e., by listening to the patients talking in these discussions and noticing patterns and unexplained symptoms shared by lots and lots of people. Makes me wonder if other researchers routinely follow message boards by people who actually have the disease/disorder they are studying. Or as you say "research by social media". Seems like perhaps they ought to since this may be a method of accelerating new information/new findings/ and helping researchers determine which aspects to focus on/study. It does seem that there has been a rather fast increase in knowledge about certain aspects of eds in the last 5-10 yrs, like EDS being associated with POTS, dysautonomia and chronic fatigue. I thank you very much for the research you are doing which goes so much further.

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Hi, DrDiana.

I've had 2 sleep studies (no obstructive sleep apnea)--done in 2 different sleep labs by different companies. Both of mine showed alpha waves intruding all throughout my sleep phase. I do not get into the deep stage of sleep and very little REM. I have hypersomnolance and fall asleep very rapidly (which was explained to me by the sleep doctor as 'mild narcolepsy). My studies were done a few years apart. I also have cataplexy. My DH often thinks I am awake when I am asleep and other times I am 'awake' but semi-dreaming without sleeping, and feel that my eyes are open/can hear/feel my heart pounding/cannot make more than utterance (sometimes not even an utterance) and cannot move to 'wake up' from this state. I am yet aware (sometimes may think I heard a noise or see somebody in doorway--I think triggered by TV when it's on as I'd started to drift to sleep). I don't plan on napping, yet I cannot avoid falling asleep sporadically.

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Perfect day for me to notice this thread.

I was just looking up some recent symptoms. It seems that I'm experiencing hypnagogic hallucinations, in combination with sleep paralysis. This site described my symptoms pretty well:
http://www.dreamdictionary.org/sleep/paralysis/

I really thought I was going crazy, because I was having hallucinations in the mornings, along with feeling paralyzed. When I have mornings like this (about half the time), I will have much more severe POTS symptoms that day. I also feel that I haven't slept much at all...more tired upon waking than I could ever be at night time.

I do have a history of narcolepsy based on clinical symptoms and irregular sleep cycles.

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