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Can You Have Narcolepsy Without Cataplexy?


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#1 nike0518

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Posted 18 March 2013 - 06:49 PM

im 16yrs old and just got diagnosed the beginning of this school yr (junior in hs) and i was just wondering if you can have narcolepsy without cataplexy.

 

Now dont get me wrong im not questioning rather i have a condition because i know personally that there is something very wrong with me and that i should not be so sleepy if i follow rigorous healthy habits.

 

i dont have cataplexy but i did two sleep studies and a day study which led to my diagnosis.

 

1st sleep study was without cpap type devices and results were sleep onset of .4 of one minute.  + mild apnea

2nd study included a day study right after , included cpap whole night , sleep onset was 4.8min

day study naps = 3.0min, 6.0min, 3.5min, 9.5min, with no sleep rem onset during any of the naps

 

i am new to these forums too btw .

ill appreciate any help



#2 Hank

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Posted 18 March 2013 - 08:12 PM

You can have N with or without Cataplexy.

 

I am very glad for you that you have been diagnosed early in your life.



#3 nike0518

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Posted 18 March 2013 - 08:33 PM

thnx and yeah im very glad too but it has caused alot of damage already.

I wish there was more awareness so i would of known earlier.

 

i ask because i read on here about similar conditions like idiopathic hypersomnia and i just want to know out of curiousity purposes if what i have is truly narcolepsy because i dont want to claim i have a condition if i dont?



#4 nike0518

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Posted 18 March 2013 - 08:37 PM

btw i already asked my dr and he said yeah i have narcolepsy w/o cataplexy based of process of elimanation but i still ask here because i wonder if he just diagonosed me just because nothing else seem to fit in my category or i really do have narcolepsy?



#5 sweetest_shone

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Posted 18 March 2013 - 09:03 PM

http://braindiseases...e-need-to-care/

According to this site to be Dx Narcoleptic you have to have sleep latency of usually less than 5 minutes and immediate onset REM. For the Idiopathic Hypersomnia Dx there is also a short sleep latency time but no onset REM.
Please re-read for yourself as I am definitely sleepy. But this info is towards the bottom of the page.
The treatments for both Dx's are the same but anyways.... Hope it helps.

#6 Hank

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Posted 19 March 2013 - 07:22 AM

You have not mentioned if you have experienced sleep paraylsis or hypnogogic hallucinations (visual or auditory just before or just after sleep).

 

It is not uncommon for people to not hit REM during an MSLT- and a repeat test is then needed. Some medications interfere with REM. Doctors are generally reluctant to make the N diagnosis.

There are other differences that make Idiopathic Hypersomnia different from N: 

  • Daytime naps that do not relieve drowsiness in IH
  • Difficulty waking from a long sleep -- may feel confused or disoriented (also called Sleep Drunkenness)
  • Increased need for sleep during the day -- even while at work, or during a meal or conversation
  • Increased sleep time -- up to 14 - 18 hours per day (more than N

Keep asking questions and educating yourself. Ask your MD questions so you feel more comfortable with your diagnosis. 



#7 DeathRabbit

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Posted 19 March 2013 - 10:42 AM

I read somewhere that actually only 1/3 of diagnosed narcoleptics present with cataplexy. It's a bit of a misnomer that the two (N and cat) have to correlate.



#8 sweetest_shone

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Posted 19 March 2013 - 05:08 PM

[*]Difficulty waking from a long sleep -- may feel confused or disoriented (also called Sleep Drunkenness)
[*]Increased need for sleep during the day -- even while at work, or during a meal or conversation
[*]Increased sleep time -- up to 14 - 18 hours per day (more than N

I wanted to ask you about these things...
I definitely have a hard time waking up. I personally think it is b/c of the stimulants I am on and my Dr confirmed his as well. But I never feel confused, etc.
Also, I definitely have EDS, is this the same things as the increased need for sleep you are talking about?
And last, I do not sleep 14-18 hrs per day but I really want to and I'm pretty sure I could!

As I have said, my MSLT was consistent w/ N so since everyone is different And meds effect everyone so differently, couldn't those things also be present in someone w/ N Dx?
I'm not attacking you, I'm just curious. You seem very knowledgable. And I would like to know what you honk about that.

#9 nike0518

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Posted 19 March 2013 - 05:50 PM

well i dont sleep 14 hrs non stop maybe if i took a nap in the afternoon like i used to before my diagnosis.

and paralysis im not sure bc if i took a nap during the day after school and set my alarm to only a 30 min nap, i would always turn alarm off and continue to sleep and sleep and would usually wake up after a 3 hour nap which is bad if i have alot of hw that day.

 

I used to always have graphic nightmares and when i took melatonin at before i went to bed, my nightmare would be very graphic.

most would include see specific family members murdered in detail before my eyes from a spectator view and feel very believable even when i woke up.

 

whenever i wake up from either a nap or in the morning  i have to really push and motivate. i would describe it as a strong gravity pulling on me towards the bed or tremendous weight on my body making it very difficult to wake up

 

before treatment/meds if i took a a nap in the afternoon 3 hrs i would wake in the middle of the night not be able to sleep all the way through



#10 munky

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Posted 20 March 2013 - 08:15 PM

I read somewhere that actually only 1/3 of diagnosed narcoleptics present with cataplexy. It's a bit of a misnomer that the two (N and cat) have to correlate.

 

As I understand it, it's really more a case of if you have cataplexy, you more than likely have narcolepsy, not the other way around. That's based on no one yet having been found to have cataplexy who doesn't also have narcolepsy.

 

So, as doctors currently see it, you can't have cataplexy without narcolepsy. However, you can have narcolepsy without cataplexy.



#11 sk8aplexy

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Posted 21 March 2013 - 11:39 AM

There is very rarely cases of 'Idiopathic Cataplexy' which basically is Cataplexy occurring for no underlying, or rather unknown, reason.

Very much that is what I thought my case would turn out to be, prior to getting the 'Probable N w/ C' dx.

Once though, I understood the different symptoms of N and that each person with N experiences different variations of the 4 symptoms and sometimes not all 4 of the symptoms.

That understanding, combined with lots of reflecting and gauging within my past experiences and also symptoms; it became clear that Narcolepsy with Cataplexy is part of what all I have and experience.

For me, the EDS has always been there but I learned to mentally mask it until it had been fatigue for years and years, it then took an 'Idiopathic Central Sleep Apnea' diagnosis along with multiple test to rule out that the Cataplexy was not epileptic seizures, and finally the MSLT resulting in the dx I have.

Really, in my mind it feels like the terminology needs to be updated dramatically, and somehow be much more specific yet broad, if that makes any sense...

In my mind it's so much more than a 'sleep disorder' and that labeling/terminology causes so much difficulty; maybe I'm alone in thinking such, or maybe the other matters I have contribute to my thinking such.



#12 munky

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Posted 21 March 2013 - 10:17 PM

Don't want to hijack this thread, but wanted to say I agree with that last. I don't tell people it's a sleep disorder. I tell them it's a neurological disorder that affects sleep and is most likely caused by an auto-immune reaction. Say 'sleep disorder' and people automatically think, 'Oh, you just have to sleep more/better."



#13 lkl

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Posted 22 March 2013 - 04:48 AM

That's a good idea munky. After a new co-worker (everyone else in my department has had a couple of years to get used to me sleeping through my breaks) commented about my lunchtime nap, being a "good habit", I told her that I had a sleep disorder, and that it wasn't so much a good habit, but a necessity, as  I literally can't get through the afternoon without it. At first she thought I was joking, but then she realized I wasn't, and said said, "you're serious, aren't you? Are you sleeping at night?" I said I was, and she said it was good to get lots of sleep. I said it wasn't good, since even though I sleep a lot, I still feel sleepy all the time. I don't think she really understood. Maybe if I had called it a neurological disorder, so might have got a better idea.

 

And then today, she told me that she mentioned to her husband (who is an orthopedic surgeon, that has patients on the ward I am working on at the moment), that I sleep like a baby at lunchtime. She didn't mean that in a negative way, I don't think. But I felt so embarrassed; it is going to be awkward for me, next time I see her husband. Not sure if she also mentioned to him about the reason for my daytime naps.



#14 Megssosleepy

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Posted 22 March 2013 - 10:22 AM

Don't want to hijack this thread, but wanted to say I agree with that last. I don't tell people it's a sleep disorder. I tell them it's a neurological disorder that affects sleep and is most likely caused by an auto-immune reaction. Say 'sleep disorder' and people automatically think, 'Oh, you just have to sleep more/better."

 

I do the same thing... I hardly tell anyone but if I do I wont ever say sleep disorder.  I also never name the Disorder N.  I simpley keep it at a neurological disorder where I am missing the cells that regulate sleep.

 

Also I wonder if more people actually have Cateplexy then know it.  I think a lot of us figure it out after being Dxed or our N progress and we start having it more.



#15 sk8aplexy

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Posted 22 March 2013 - 10:58 AM

Edit -> Hopefully, this won't surprise many or any of you, and/or cause you distress...

Awareness is important and it is part of my frustration with the terminology, still being used. <-End Edit

 

Notice 'the last line' (which I bolded, italicized and underlined - it's what I've been telling people) down below, copied and pasted from the following link:

http://stanfordhospi...l_faculty.htmld

 

"                    Mignot, Emmanuel                                                  


Clinical Focus
  • Sleep Disorders
  • Narcolepsy Cataplexy Syndrome
  • Kleine-Levin Syndrome
Research Interest

The research focus of the laboratory is the study of sleep and sleep
disorders such as narcolepsy and Kleine Levin syndrome. We also study
the neurobiological and genetic basis of the EEG and develop new tools
to study sleep using nocturnal polysomnography. Approaches mostly
involve human genetic studies (GWAS, sequencing), EEG signal analysis,
and immunology (as narcolepsy is an autoimmune disease of the brain)."



#16 nike0518

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Posted 22 March 2013 - 06:48 PM

also i wanted to ask if anyone feels the same i do as in a symptom..

  • theres one symptom, that i think is bc of narcolepsy, that really makes "lazy and tired" 
  • the back of my neck becomes very "weak in a sense" makes me want to lay down and sleep and/or not work and/or have head while walking .
  • this is what breaks me into "lazy/sleepy" , ive told my sleep specialist and he said that is my body telling me im sleepy and/or bc its a effect of sleepines.... now i know they correlate but ive wondered if it might be a sort of cataplexy, bc my neck just gives up and gets very weak and makes very tired and sleepy .
  • this my sign that i use to let me know when my meds has stopped working for the day and to take another pill( ritalin 20mg 3 a day is what im currently prescribed) nuvigil works great at getting rid of this symptom but these low dosages of ritalin/concerta med  requires me higher dosages for this specific symptom ... nuvugil is too expensive
  • but thats why i would prefer ritalin and or concerta ( tried both already 18 mg and 20 mg respectively) so im going to need higher dosage ..

 

but my quesetion is does anyone have this symptom that i have??????

bc i havent heard ppl talk about it specificaly online and my dr told me its not cataplexy 

 

and i would also like to ask if anybody knows about this symptom and the best way and/or med for this symptom bc this is what breaks me down to sleepiness????



#17 munky

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Posted 22 March 2013 - 09:24 PM

@sk8aplexy:

Narcolepsy with cataplexy is an autoimmune disorder. As I understand it, no one yet knows the cause of narcolepsy without cataplexy. Unfortunately, in most of the articles written about these studies, the authors will only make reference once in the beginning to the fact that they are studying, specifically, narcolepsy with cataplexy, and that confuses the issue. I've more than once had to re-read some of these studies to know whether they're studing narcolepsy with cataplexy or narcolepsy without cataplexy--and it almost always turns out to be narcolepsy with cataplexy. I've found very little research on narcolepsy without cataplexy, beyond the studies that established there may be at least one different cause for narcolepsy without cataplexy, unrelated to the autoimmune reaction they now believe causes narcolepsy with cataplexy.

 

@nike0518:

I just had a recheck with my doctor, and asked him about cataplexy, since it's a subject I don't have much understanding of and I was wondering about one particular incident in my own case. That incident involved me standing in a line at a store, mildly annoyed because there was only one register open and the lady in front of me had three carts crammed full of stuff. While standing there, I shifted my weight--and just fell over. I sat there for a second, surprised, then stood back up again. I blew it off--I have weak ankles, and it isn't the first time one gave out under me--but others here suggested it might have been cataplexy. My doctor thinks not, however, because there was no "strong emotional trigger." And, frankly, if I collapsed every time I got even mildly annoyed at someone, I wouldn't be able to walk. So, from what the doctor said, unless there's some sort of strong emotion that might be triggering the attacks, it's unlikely to be cataplexy.

 

Note, I did not say it isn't cataplexy. There are people here with a lot more experience with cataplexy that will hopefully be along to give you some advice. But my understanding is that, while you may feel more sleepy after a cataplexy attack, and being sleepy might increase the likelihood of them occuring, sleepiness itself is not a trigger. So, my advice would be to think about whether or not you've experience any particular emotion--not sleepiness, but emotion: happiness, sadness, laughter, anger, etc.--immediately prior to your neck feeling weak. I know, in my case, when I have a sleep attack, it's awfully hard to keep my head up and my eyes open ... but it isn't cataplexy, it's just my body wanting to lie down and sleep.



#18 sk8aplexy

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Posted 22 March 2013 - 10:05 PM

Good explanations/clarification. 

I left out the 'with cataplexy' and only quoted the text in the link; part of that was not wanting to explain it in the manner you did, again well said.

I deal with Cataplexy that causes me brief 5-15 seconds of complete temporary paralysis, after awkward collapse; but it also can be as minimal as a spasm-like of the face, or bobbing of the neck forwards, it has a sensation like a flickering of the muscles.    Some fall into REM during Cataplexy and are out for up to hours, that I can not imagine...

 

I know that 'encephalitis lethargica' is commonly used in regards (studies) to similarities to Nw/C, but also perhaps as a prior cause or  (like strep is described also) triggering of  Nw/C...

 

Like you say in your last sentence: "in my case, when I have a sleep attack, it's awfully hard to keep my head up and my eyes open ... but it isn't cataplexy, it's just my body wanting to lie down and sleep"... That specific effect/feeling, is what I mention as 'bobbing of the neck forwards' during Cataplexy yet during such my thoughts, thinking, hearing and, most always too, my vision is completely there and controllable, unlike the dreaming/clouded effect when nodding off.  The Cataplexy is always reacting to or after some, 'triggering occurrence'; be that something said, visual, an action I am doing or another does, unanticipated/unexpected, sillyness, pleasure, frustration - but near always unpredictable and not when expected, there are weird varying parameters of the conscious and subconscious states(!).

 

Here's an interesting, recent article:

http://well.blogs.ny...s-to-happiness/

 

The best of luck to you all.



#19 nike0518

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Posted 23 March 2013 - 11:07 AM

also i wanted to just add that i was reviewing my copy of my first sleep study and saw that the  sleep stages in % section 

  • n1- 17.1%
  • n2- 39.6%
  • n3- 42.4%
  • r(rem)- 0.9%

now im shocked i only have .9 % rem and i have literally 0 of n4 ... now  does anybody know if thats bad / not normal ????

i thought mayb the n4 is included in n-3 but on the 2nd page is shows the data( graph) and yup no stage 4 at all 

i only hit rem at one point in the graph and the graph just took a straight dip to rem breifly  and then back n-2 and n3 and never hit rem again....

anybody can help explain how bad this effects my eds?



#20 h.wynn

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Posted 31 March 2013 - 05:22 PM

So glad you got diagnosed so erly. I was 31 when I was diagnosed. Im 41 now. Thinking back I had it when I was your age. I new back then that something was wrong onbody should be that tired. I rember that is around when the cataplexy started. I would drop things when I would laugh. The cataplexy dident get any worse than that till around 25. The point is you might have cataplexy and not know it or it might show up later on in life.