18 replies to this topic

[wisher]

I had a follow-up appointment with my doctor today, to discuss the results of my PSG and MSLT. According to the sleep studies, my REM was fine and there's no signs of narcolepsy. She tested my blood for the narcolepsy markers and said I was positive for 2 out of the 3, but that this didn't necessarily mean that I have narcolepsy.

I asked my doctor "what about the cataplexy then?" and she didn't really seem to know what to say. I asked her if it was possible that I could have cataplexy without having narcolepsy. She said it would be extremely rare. I looked at her like "okay, what then?" and she sat there kind of stumped for a minute. Then she told me to note the cataplexy on my sleep diary that she's tasked me with keeping for the next 6 weeks.

So, friends, now I am super confused. I was almost certain, as was my doctor, that I had narcolepsy. But the sleep studies are saying otherwise. Is it possible I have cataplexy but no narcolepsy, and that I just happen to have other EDS and sleep disorder problems? Is it possible that what I am experiencing isn't actually cataplexy after all? I know cataplexy is different for everyone, but I'm hoping someone can help me figure this out better. I read some stories on here that sound exactly like me, and others that I can't really relate to (like the cataplexy lasting 30 minutes, or 3 hours).

A description of what I experience that I assumed was cataplexy:
Ever since I can remember, my knees have buckled when I laugh at something especially hilarious. Sometimes it gets to the point where I am halfway to the ground on my knees. Recently it has gotten to the point where I will actually collapse onto the floor. It's like it has spread from just my knees/legs to more parts of my body. If I am sitting down and watching tv and I laugh, my arms, shoulders, and legs will just go limp and tingly. If my back is not supported, I'll kind of flop backwards off the arm of the couch or whatever and my head will dangle too because my neck won't be able to hold my head up. If it gets to the point where I am flopping backwards or collapsing onto the floor, it usually goes like this: I laugh, I feel the flimsiness/tingling, I drop, I try to get up, I can't because I'm still feeling flimsy/tingly, sometimes I flop multiple times. Lately I've just been kind of giving up and stay collapsed until the hilarity is over. Usually during this, I am still laughing. I don't look like I am passing out or whatever, because I am laughing (or at least smiling, I think), and I just collapse and it feels like my muscles were replaced with jelly. Also, tickling is HORRIBLE. I hate being tickled and kind of dread it because every time I get tickled, I just kind of... er... well, I fall useless, pretty much. I'm limp and weak and can't breathe and can't do anything to try to make them stop. It's like when someone tickles me they press this "seize" button and I'm left at their mercy with no way to show/explain that I can't breathe or move and that I'm actually not having fun. God, that would be a horrible way to be assaulted, wouldn't it?

When I get into arguments or whatever with my boyfriend, it also happens. One time he said something that shocked me so completely that I just fell straight forward onto the floor (and luckily I just barely missed faceplanting onto the back of my couch). I lay there for about a minute before I was able to try to get up, and even then I felt the same kind of flimsy feeling as I tried to get up. Often times if I get sad, I will have similar issues, where I won't be able to move or speak or respond and it is very frustrating. Usually with that, there is so sudden collapse because I am already sitting or lying down, then I just realize I can't move and can't speak. One night I was very sad and was kind of in this weird state for a few hours. I wasn't paralyzed, but just about. All I could do was sit and not move (it took a LOT of effort to try to move the tip of my finger, even) and not speak or anything. It was terribly frustrating because it just made me more sad and in turn that just made it worse.

Also, after all of these "cataplexy" episodes, I feel very exhausted and just want to go to sleep.

This is all very frustrating for both me and my boyfriend, so it was a relief when I realized it could be explained by cataplexy.

And now I'm being told that I don't have narcolepsy and so I probably *don't* have cataplexy? Can anyone offer some insight?

[Kathleen]

That is strange based on all the symptoms you have described. The only thing that I can think of is if you were on some type of medication the suppressed REM during the naps. But again, you said you were dreaming during the naps. Hmmmm?

I am guessing you go back in 6 weeks with your little Cataplexy diary? While there, I would ask for a copy of the reports, just so you have a copy. Someday you may want to have another doctor review them.
I'm curious though what she thought was wrong with you.

Good luck

[wisher]

That is strange based on all the symptoms you have described. The only thing that I can think of is if you were on some type of medication the suppressed REM during the naps. But again, you said you were dreaming during the naps. Hmmmm?

I am guessing you go back in 6 weeks with your little Cataplexy diary? While there, I would ask for a copy of the reports, just so you have a copy. Someday you may want to have another doctor review them.
I'm curious though what she thought was wrong with you.

Good luck

Yeah, I don't know because the only medication I'm taking is for thyroid and PCOS, and I don't *think* they should affect my REM patterns at all, but who knows. I asked her how come I was dreaming during the naps if it wasn't REM and she said that you can also dream during the lower stages of sleep. But then I'm wondering how they even track REM then because I thought they used the little nodes stuck near my eyes to determine eye movement, and don't your eyes move when you're dreaming? I don't exactly understand it.

Yes, I'll be going back with my cataplexy/sleep diary and see what she says. She also gave me copies of the reports without me even having to ask for them! Since the reports looked rather normal, she seemed to zero in on the periodic limb movement issue, which, earlier in the report seemed to say that it wasn't a big deal, but it was like the only thing she could think of as a source for the EDS or whatever. So... we'll see.

In the mean time, do you think my descriptions of cataplexy sound like cataplexy? I mean if that's not what I'm experiencing, then I can more readily accept her diagnosis of "not narcolepsy". =/

[Enginerd]

Yeah, I don't know because the only medication I'm taking is for thyroid and PCOS, and I don't *think* they should affect my REM patterns at all, but who knows. I asked her how come I was dreaming during the naps if it wasn't REM and she said that you can also dream during the lower stages of sleep. But then I'm wondering how they even track REM then because I thought they used the little nodes stuck near my eyes to determine eye movement, and don't your eyes move when you're dreaming? I don't exactly understand it.

Yes, I'll be going back with my cataplexy/sleep diary and see what she says. She also gave me copies of the reports without me even having to ask for them! Since the reports looked rather normal, she seemed to zero in on the periodic limb movement issue, which, earlier in the report seemed to say that it wasn't a big deal, but it was like the only thing she could think of as a source for the EDS or whatever. So... we'll see.

In the mean time, do you think my descriptions of cataplexy sound like cataplexy? I mean if that's not what I'm experiencing, then I can more readily accept her diagnosis of "not narcolepsy". =/

It sure sounds like cataplexy to me. Did your doctor discuss the possibility that you could still have narcolepsy but it just didn't show up on this MSLT? I did some reading after my diagnosis and learned that narcoleptics don't enter REM sleep during every nap, or even every day, making it difficult to diagnose by the current standard--the MSLT. Given your obvious symptoms I'm surprised your doctor didn't suggest repeating the MSLT in the future just to see what happens. Even though I hadn't complained of any cataplexy-like symptoms, my sleep doctor insisted on having another MSLT when I returned to her two years after my initial sleep study/MSLT still complaining of EDS (and a few recent episodes of sleep paralysis). That's when REM sleep finally showed up in 3/5 naps. I had had two MSLTs prior to this one and while I had fallen asleep during every single nap, I never went into REM until my most recent MSLT. I thought it was odd, but I guess the disease either hadn't progressed enough or was hiding.

It's still possible you have narcolepsy but it evaded this test. Maybe ask your doctor about this possibility when you see them next? You definitely have a lot of suspicious symptoms.

[okami]

This sounds like another episode of "Doctor's Don't Know S***"

Here's a link (scroll down to page 280, end of paragraph 1) that states that a negative MSLT does NOT rule out Narcolepsy. 20-40% of narcoleptics with cataplexy fail the MSLT on average. THERE IS NO TEST 100% POSITIVE IN THE DIAGNOSES OF NARCOLEPSY. Blood test, Spinal tap, or sleep study; there is nothing current to be a fool proof test for Narcolepsy. Anyone suggesting otherwise doesn't know what they're talking about.

Sorry if I sound forceful but sleep doctors don't know a lot about Narcolepsy/Cataplexy. You (to me) are clearly experiencing Cataplexy. The fact that you can identify emotions triggering your collapses is the indicator.

The results you got are something I would expect to get myself since I don't have clear cut collapses during emotional duress. I just get wobbly, slur my speech, and rarely fall down laughing.

Like the technician said, it IS possible to have Cataplexy without Narcolepsy but it is VERY rare. So more likely they misdiagnosed you since you didn't show REM during the MSLT. I hope they start listening to you better and make sure to bring in a copy of the link I sent you when you next see them. I will be tomorrow when I do (just in case they say the same )

Hope I helped

[wisher]

It sure sounds like cataplexy to me. Did your doctor discuss the possibility that you could still have narcolepsy but it just didn't show up on this MSLT? I did some reading after my diagnosis and learned that narcoleptics don't enter REM sleep during every nap, or even every day, making it difficult to diagnose by the current standard--the MSLT. Given your obvious symptoms I'm surprised your doctor didn't suggest repeating the MSLT in the future just to see what happens. Even though I hadn't complained of any cataplexy-like symptoms, my sleep doctor insisted on having another MSLT when I returned to her two years after my initial sleep study/MSLT still complaining of EDS (and a few recent episodes of sleep paralysis). That's when REM sleep finally showed up in 3/5 naps. I had had two MSLTs prior to this one and while I had fallen asleep during every single nap, I never went into REM until my most recent MSLT. I thought it was odd, but I guess the disease either hadn't progressed enough or was hiding.

It's still possible you have narcolepsy but it evaded this test. Maybe ask your doctor about this possibility when you see them next? You definitely have a lot of suspicious symptoms.

Oh my gosh, thank you so much for that information! I found it interesting (and of course, disappointing) that my doctor was so ready to throw the possibility of narcolepsy out the window. Especially since when I first met her, she seemed very knowledgeable about sleep disorders, including narcolepsy, and very open and interested in helping me. She's even part of the Narcolepsy Network (or whatever it's called) for doctors, and told me to come to this site/forum! I'm hoping that after I come back to her with the sleep diary, she'll want to investigate N further and possibly do another MSLT.

[wisher]

This sounds like another episode of "Doctor's Don't Know S***"

Here's a link (scroll down to page 280, end of paragraph 1) that states that a negative MSLT does NOT rule out Narcolepsy. 20-40% of narcoleptics with cataplexy fail the MSLT on average. THERE IS NO TEST 100% POSITIVE IN THE DIAGNOSES OF NARCOLEPSY. Blood test, Spinal tap, or sleep study; there is nothing current to be a fool proof test for Narcolepsy. Anyone suggesting otherwise doesn't know what they're talking about.

Sorry if I sound forceful but sleep doctors don't know a lot about Narcolepsy/Cataplexy. You (to me) are clearly experiencing Cataplexy. The fact that you can identify emotions triggering your collapses is the indicator.

The results you got are something I would expect to get myself since I don't have clear cut collapses during emotional duress. I just get wobbly, slur my speech, and rarely fall down laughing.

Like the technician said, it IS possible to have Cataplexy without Narcolepsy but it is VERY rare. So more likely they misdiagnosed you since you didn't show REM during the MSLT. I hope they start listening to you better and make sure to bring in a copy of the link I sent you when you next see them. I will be tomorrow when I do (just in case they say the same )

Hope I helped

Thanks for that link! I'm going to print it out and keep it with me! I was actually thinking about suggesting the spinal tap to my doctor as well. I've already had 3 spinal taps a coupel of years ago when all my symptoms first came up. Of course, back then, the neurologist was looking for MS and checking the pressure of the spinal fluid, not looking for hypocretins or whatever. But he DID send my spinal fluid to the lab, so I'm hoping that would be sufficient information to send to this doctor. Because I *really* don't want to go through another spinal tap. In any case, yes, it is very frustrating because during my first meeting with this doctor she was basically acting like I had narcolepsy and sent me home with a bunch of information about it and about Xyrem, especially for the cataplexy. It's like she forgot who I was when I met her for the follow-up after the sleep study!

[wisher]

Okay, there is just no way that what I have is NOT cataplexy. It's getting worse, and much more frequent and more apparent. It's happened twice at the house of some relatively new friends, and it's kind of embarrassing.

On Saturday, my boyfriend and I were at this couple's house, and we were all playing Catchphrase at the kitchen table. I got up to take a sip of my drink, which was on the counter a couple feet from the table. We were all laughing cause the game was just fun/funny in general, but then one of them said something that just struck me (it usually seems to happen when the funny thing catches me off-guard) and there I was falling to the floor, trying desperately to set my glass on the counter before my arm fell too low to reach it. I was on the floor, relieved my glass was safe on the counter, and after a moment I recovered and sat back down in my seat at the table. Then my friend asks "why'd you fall down?" -- I was so embarrassed that I just kind of tried to change the subject. I couldn't even think of a good line like "that just happens when I laugh".

[Sleepingcrow]

Okay, there is just no way that what I have is NOT cataplexy. It's getting worse, and much more frequent and more apparent. It's happened twice at the house of some relatively new friends, and it's kind of embarrassing.

On Saturday, my boyfriend and I were at this couple's house, and we were all playing Catchphrase at the kitchen table. I got up to take a sip of my drink, which was on the counter a couple feet from the table. We were all laughing cause the game was just fun/funny in general, but then one of them said something that just struck me (it usually seems to happen when the funny thing catches me off-guard) and there I was falling to the floor, trying desperately to set my glass on the counter before my arm fell too low to reach it. I was on the floor, relieved my glass was safe on the counter, and after a moment I recovered and sat back down in my seat at the table. Then my friend asks "why'd you fall down?" -- I was so embarrassed that I just kind of tried to change the subject. I couldn't even think of a good line like "that just happens when I laugh".

Yeah, that all sounds like cataplexy to me. And please, don't be embarrassed, you have nothing to be embarrassed about, besides you have a lot of other things to worry about. I found having narcolepsy and cataplexy was so upsetting to me, that focussing on it actually makes it worst, rather than just accepting it when it happens, waiting until it's done and simply going along with your day.

Not a lot of people have narcolepsy, so it's hard for people to understand we all experience it slightly differently i.e. some people develop cataplexy before they have any narcoleptic symptoms. I suspect your narcolepsy isn't, how shall I say, fully developed yet, or maybe you will be lucky and it won't get worse. But I've heard a lot of people say they think they have narcolepsy (especially after I say I do ) and out of all of them, there was maybe one who borderline might have it, the rest just need a good night's sleep. Your words are too dead on for it not to be, unless you're cutting a pasting someone else's posts.

Good luck with it all, and let us know how you do!

[wisher]

Yeah, that all sounds like cataplexy to me. And please, don't be embarrassed, you have nothing to be embarrassed about, besides you have a lot of other things to worry about. I found having narcolepsy and cataplexy was so upsetting to me, that focussing on it actually makes it worst, rather than just accepting it when it happens, waiting until it's done and simply going along with your day.

Not a lot of people have narcolepsy, so it's hard for people to understand we all experience it slightly differently i.e. some people develop cataplexy before they have any narcoleptic symptoms. I suspect your narcolepsy isn't, how shall I say, fully developed yet, or maybe you will be lucky and it won't get worse. But I've heard a lot of people say they think they have narcolepsy (especially after I say I do ) and out of all of them, there was maybe one who borderline might have it, the rest just need a good night's sleep. Your words are too dead on for it not to be, unless you're cutting a pasting someone else's posts.

Good luck with it all, and let us know how you do!

Thank you for making me feel better about this! I'm certainly not cutting/pasting anyone else's posts, so your sentiment pretty much mirrors mine: this is definitely cataplexy.

What confuses me, though, is that I've been having other sleep-related symptoms for almost 3 years, but my sleep study results don't really point to Narcolepsy. I find it strange that I would have cataplexy and some other, non-Narcolepsy, sleep disorder. So maybe it is like you said and the N hasn't fully developed yet. Or maybe I just got unlucky with the sleep study results. I just don't know. In any case, it is such a relief to know that I'm not mistaken about this being cataplexy. Thanks again.

[okami]

Thank you for making me feel better about this! I'm certainly not cutting/pasting anyone else's posts, so your sentiment pretty much mirrors mine: this is definitely cataplexy.

What confuses me, though, is that I've been having other sleep-related symptoms for almost 3 years, but my sleep study results don't really point to Narcolepsy. I find it strange that I would have cataplexy and some other, non-Narcolepsy, sleep disorder. So maybe it is like you said and the N hasn't fully developed yet. Or maybe I just got unlucky with the sleep study results. I just don't know. In any case, it is such a relief to know that I'm not mistaken about this being cataplexy. Thanks again.

I am in the same boat you are wisher! This is very frustrating!!

So I suspected I had Cataplexy since I first looked into Narcolepsy. As I posted before, I didn't show any REM during the MSLT and my SOREM period for the PSG was smack dab in 'normal.' Nothing is pointing to Narcolepsy.

Back when I was first researching about Cataplexy, I could only point to past episodes and not much recent. This, however, is changing and I think it's because of the Ritalin. I know it sounds weird, but I think I now have the energy to actually 'feel emotions.' Before I was just so tired I didn't care much.

I've been experiencing weakness in my arms and legs (legs the most) whenever I feel nervous or scared. This is happening more and more recently now that I'm going to companies to get paper applications. I would walk up to them, ask for the app, and then proceed to feel like I'm going to collapse. It's getting to the point where I can't play my video games anymore (or at least not as well) because I get so nervous and my hands slow down and won't respond! I've started to notice my head bobbing when laughing and when I find something funny (like you when I'm not expecting it), I get an instant weak-ish feeling go through my body that goes away before anything noticeable happens.

I'm kinda stuck on where to go from here. I love the reaction I'm getting from Ritalin but I really hate all this cataplexic symptoms. Does this sound like Cataplexy to anyone else? I'm going to find a new doctor because I don't think the one I have really cares about these symptoms.

In fact, I'm setting up an appointment with a Neurologist tomorrow since I have a referral from my PCP for my migraines. I'll talk with that doctor to see if they know about N/C or knows someone they can refer me to.

I wanted to scream today because my dad was yelling at me about not finding a job or talking to our neighbors about work I can do for them. Each time I approach someone new, I get all jello-legged and I hate that. I hated it even more because I don't know how to tell my dad that. They can't even understand why I need the Ritalin.

Oh and a question about Cataplexy. Does anyone who get it feel light-headed/dizzy when it starts? I thought I read about a lady (who had cataplexy but not Narcolepsy) where she felt like they were only dizzy spells. I'm almost constantly feeling some form of dizziness/vertigo. It's getting worse just sitting here thinking about earlier. I don't know if it's from blood pressure changing from emotions or if it's something to do with cataplexy. Just another thing that's making me angry.

[magpie]

What was your MSLT time? If cataplexy is present, the diagnosis of Narcolepsy may be made even without the daytime REM- you only need one or the other. So maybe your MLST wasn't low enough for a narcolepsy diagnosis, or hypersomnia? There might be other causes of cataplexy, anything from tumors, to panic attacks so ask if the doctor thinks there is something else you should look into ruling out too. Good luck

[wisher]

What was your MSLT time? If cataplexy is present, the diagnosis of Narcolepsy may be made even without the daytime REM- you only need one or the other. So maybe your MLST wasn't low enough for a narcolepsy diagnosis, or hypersomnia? There might be other causes of cataplexy, anything from tumors, to panic attacks so ask if the doctor thinks there is something else you should look into ruling out too. Good luck

My MSLT latency was horrible, because I was so worried about being able to fall asleep that t kept me from falling asleep.

I've been tested for tumors. I don't see how panic attacks would cause cataplexy from laughter. Especially since I've had it my whole life. But if we can find another cause for the cataplexy, and thus treat it, and also find the cause for my other sleep disorder issues and treat those, that would be brilliant.

[Naptimenow]

Hi Wisher,

I know your frustration, my MSLT latency was 12 min (normal). I had trouble falling asleep on my first nap and I didn't fall asleep at all on my second. The tech was about to release me after my fourth nap and that's when I went into REM in about 7min and had to stay for my fifth nap. I got scared that I went into REM and I thought I didn't fall asleep on fifth nap but the tech said I did. Needles to say my MSLT came in as normal. On my PSG showed no apnea, snoring or PLM. The only thing that constantly showed up was reduced stages of deep sleep in my N3 and REM sleep; 15% total during my PSG. I also reached REM in 66 min from falling asleep. My only symptom is EDS and maybe sleep paralysis (not sure).

I just saw my Doc and after he saw the results he asked me what I thought; I said, it seemed that it was the beginning of something, he was in total agreement. I've been put on lunesta 2mg and raised my concerta to 36 mg.

I hope my experience can help you. You can read more about how it got started in my blog " tell me what you think". Good luck.

[wisher]

Hi Wisher,

I know your frustration, my MSLT latency was 12 min (normal). I had trouble falling asleep on my first nap and I didn't fall asleep at all on my second. The tech was about to release me after my fourth nap and that's when I went into REM in about 7min and had to stay for my fifth nap. I got scared that I went into REM and I thought I didn't fall asleep on fifth nap but the tech said I did. Needles to say my MSLT came in as normal. On my PSG showed no apnea, snoring or PLM. The only thing that constantly showed up was reduced stages of deep sleep in my N3 and REM sleep; 15% total during my PSG. I also reached REM in 66 min from falling asleep. My only symptom is EDS and maybe sleep paralysis (not sure).

I just saw my Doc and after he saw the results he asked me what I thought; I said, it seemed that it was the beginning of something, he was in total agreement. I've been put on lunesta 2mg and raised my concerta to 36 mg.

I hope my experience can help you. You can read more about how it got started in my blog " tell me what you think". Good luck.

Thanks for sharing your experience. It gives me hope, at least, for my appointment this coming Friday. Although your results were more abnormal than mine. My PSG REM latency was like 93 minutes (normal), my MSLT average latency was 12 minutes, and I didn't have REM in any of my 4 naps. Sigh!

Also, where is our blog? I couldn't find it anywhere.

[angeline]

Did you have any stimulant of any kind within 24 hours of the test? coffee, tea, soda, cold medicine, gensing, ephedra, guarana, green tea, white tea, olong tea....

also did the sleep technician check your wires regularly during the test? My wires came unstuck a few times during all 3 of my sleep studies and they had to come to my room several times to reapply the goopy stuff and restick the leads to my skull & face...

[wisher]

Did you have any stimulant of any kind within 24 hours of the test? coffee, tea, soda, cold medicine, gensing, ephedra, guarana, green tea, white tea, olong tea....

also did the sleep technician check your wires regularly during the test? My wires came unstuck a few times during all 3 of my sleep studies and they had to come to my room several times to reapply the goopy stuff and restick the leads to my skull & face...

I did have caffeine the day before the test. The lady told me not to have any after 6:00 pm or something. Also, yes, my wires did come loose a couple times.

[angeline]

I did have caffeine the day before the test. The lady told me not to have any after 6:00 pm or something. Also, yes, my wires did come loose a couple times.

My clinic instructed me to lay off caffeine for 24hrs and I couldn't take any sedating meds for 2 weeks even melatonin. It was so hard for me the last few days before the test.

I sure hate that your test did not show the truth about your condition. What will you do now?

[sueno]

I did have caffeine the day before the test.

I also had caffeine the night before the test.

Oh my gosh, thank you so much for that information! I found it interesting (and of course, disappointing) that my doctor was so ready to throw the possibility of narcolepsy out the window. Especially since when I first met her, she seemed very knowledgeable about sleep disorders, including narcolepsy, and very open and interested in helping me.

This exact same thing happened to me.