Question On How 'awake' Narcoleptics Are Pre-Diagnosis

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Dear members of the Narcolepsy Network,


I've been pretty seriously ill for several years now and my neurologist (a sleep specialist) recently suggested I might have narcolepsy, (with or without cataplexy). I've done lots of reading about narcolepsy and in many ways it could fit - EDS, constant exhaustion, episodes of sudden muscle weakness (previously thought to be epilepcy, but now considered potentially cataplexy), and what appear to be hypnagogic hallucinations, to name a few examples.


But what I'm trying to understand, and what countless medical journals and 'advice' websites can't tell me, is how really 'awake' or 'fully conscious' a narcoleptic is before they are diagnosed and being treated.


While obviously EDS and exhaustion can both render an 'altered state of consciousness', in which people go into forms of automatic behaviour and semi-automatic behaviour (both of which happens to me), I'm trying to understand whether people with untreated narcolepsy ever just feel 'normal'. Just as there are points in the day when I'm far less sleepy than at others, there are points where I feel more 'awake' than at others. Additionally at the moment I'm being trialled on Modafinil, which is reducing a fair bit of the 'sleepiness'. But it's not making me feel more awake - I'm still groggy, confused, and more like an animated corpse most of the time than a real human being. I'm just not falling asleep or being at that point just before falling asleep as much.


I can't recall the last time I genuinely felt properly awake, alert and mentally able - completely present or in the moment. I remember from childhood what that is/was like, but I can't recall the last time I experienced it. Comparatively it feels like life is more like a half-way point between being 'awake' and 'asleep', and often it feels more like dreaming. Except that some dreams are so vivid they feel more 'real' than reality.


Have any of you any thoughts on how this does/ does not fit with narcolepsy, and/or have simliar experiences? I'm trying to get a sense of whether this is something other people who have gone on to develop narcolepsy have also felt or experienced, or if I'm being led down another rabbit hole!


Thanks in advance!

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A lot of what you say, sounds very relate-able to many aspects of the experience, which I've had having Narcolepsy with Cataplexy.

As for the, or a, 'rabbit hole' - couldn't agree more- but unfortunately that's all there seems to be and maybe there are multiple or endless holes; in fact I refer to it as a possible 'black hole'.!


Since the tetrad 4 symptoms (EDS, Sleep Paralysis, Hypnagognic Hallucinations and Cataplexy) are quite odd and very hard to really grasp at all, or begin to recognize, that is until you've grasped an understanding of how they're occurring and/or what is perhaps causing/influencing/relating, to why such all occurs (all being related to the brains hypothalamus, and specifically the neurotransmitter Hypocretin which regulates a lot of important functions including sleep states); it can be really difficult to accept as well as feel comfortable, believe, that Narcolepsy or Narcolepsy with Cataplexy is there.  It seems hard to recognize at first, or was definitely hard for me yet the Cataplexy was finally explained by such.  It seems a common thing on the forums for other too (to an extent), to be in disbelief and/or with complete confusion of the symptoms.


Regarding Cataplexy specifically, it is a very confusable and difficult thing to understand or have familiarity with, unless you experience it.

I think the terminology around both Narcolepsy and Cataplexy really needs some updating as it is broadly variable and different in so many varying ways, for each person with Narcolepsy or Narcolepsy with Cataplexy.  That is to say Cataplexy can be anything from a light bobble of the head (or head/facial spasm/weakness, or such of any part of the body) to complete (sometimes immediate/instant or within seconds, like a freeze then collapse) temporary paralysis (mine is usually 15 seconds or so but I am fully conscious and able to think, hear, often see too; while there are some who will fall into actual REM sleep and not awaken for hours).  Cataplexy 'occurs only from some trigger' though, it seems to be commonly like 90% of the time from pleasurable interactions (vast variation/s and endless degree/s of things).  It varies from person to person though in both how they're triggered and what is triggered and there is no consistency or predictability, or hardly ever at least, when it comes to Cataplexy besides for pleasure being related.


What you mention about vivid dreaming feeling more 'real' than reality; what I can relate there is only that my dreams can almost feel like an entire day or, ordeal, awakening exhausted from the dream.  Thankfully, I've never had any difficulty in differentiating the dreams from reality (besides while having perhaps a Hypnagognic Dream with Sleep Paralysis, yet upon actual awakening it is clear), but they can be so exhausting and can be very easily remembered at times, often mixing familiar places and persons/friends within the dream.  I won't say that they're controllable, but there is at times obvious mannerism or thought processes, which would be how I'd (or what I'd) think normally if I were awake.  And, they can be unusual in manners like, awakening within one dream, thinking that you've awoken, then finding yourself awakening again, and possibly even again; like dreams within dreams.


Now,  I do not want to discourage you in any way, but Polysomnography (sleep study) and the Multiple Sleep Latency Test (MSLT - a series of naps to determine how quickly you fall into REM and more, to determine if you have Narcolepsy) are what is used to determine it all.  They can do a spinal tap to measure the Hypocretin levels, this seems to relate more specifically to when Cataplexy is present and am not sure how often it is done.?  There is no 100% test to determine it though, and there seems like the terminology a lot of confusion; and there is still a lot of unknown/s and misunderstanding all over regarding it all...  As you may see by searching around on the forum/s there's not always success in treatments, but there is some.  Personally I've not had much or any success with them, so I basically have found lifestyle adjustments, food/routine/stress-avoiding/sleep-hygiene/recognition/paying-close-attention, to help.  I should mention I have many other health matters which come and go (plethora of ENT matters plus migraines and headaches, depression), some are persistent (neck pains/allergies/many sensitivities/tremors).

Please don't take what I'm saying with too much weight.

Do what you need to do, take whatever test and try what you're comfortable with.


The best of luck.

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Dear members of the Narcolepsy Network,



But what I'm trying to understand, and what countless medical journals and 'advice' websites can't tell me, is how really 'awake' or 'fully conscious' a narcoleptic is before they are diagnosed and being treated.

I was recently having a discussion with someone who has Fibromyalgia, we were both trying/thinking/wishing we could see how everyone else felt so that we could see just how a normal person feels pain/wakefulness.  Its hard to do when you don't remember a time when you have felt rested to compare what normal feels like. 


With all that being said I am always sleepy I don't have moments where I think to myself gosh I am not in the least bit tired!  Sometimes right before bed I am a little more alert than I am around 2:00/3:00 pm.  Now my tiredness has many different levels and since being on Xyrem I have more of the semi tired rather than full blown haze of sleepiness. Before treatment I had a hard time driving without falling asleep, classes, meetings, ect where a struggle (used to down 5 hour energies).  


When I didn't know what was wrong with me I thought everyone felt just as tired as I did... little did I know it wasn't the norm at all.

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Well said.  -> "When I didn't know what was wrong with me I thought everyone felt just as tired as I did... little did I know it wasn't the norm at all."


I knew something was off, but the tiredness for me seemed somehow more like fatigue and other health matters definitely were sporadic and too often, so paying close attention to such did not occur till after the diagnosis (that is the only thing that changed from having the diagnosis, which allows me to juggle things better, by understanding and recognizing).

Often, I feel mentally strong, yet when I immerse myself in some place or group, I find that mental strength to quickly dissipate.

It is rare that I feel physically strong, yet here and there, I do (thankfully).

The combination of being both mentally and physically strong simultaneously, is too rare.


Sorry am about to go off topic (tantrum!) here, perhaps.  Please disregard this, and/or do not take it heavily, I do mean absolutely no offense, nor insult...

I just can't help think in these terms...

Often, I wonder about the word 'normal' and to be very honest 'I really do not like the word as I don't believe such a thing actually exist.'

Does any 'normal' exist?  Are we talking specific to region, to gender, to nation; there's just too much for any such thing. (sorry I am more than a bit stubborn)

Is there actually, ever, such a thing/action/occurrence?  Words like typical, standard, usual, ordinary and common, all ring a bit more realistic somehow, to me.

Who decides what is 'normal?' 

Is it some statistical equation, regarding the mean and/or average?

Perhaps it may be like the word time?

Which is really more of a tool than an actual thing. 

Being born in a city that didn't ever change its clock for daylight savings time, till a few years back when the state decided it should partake in such, I found it unusual having to do such.

That comes down to agriculture from what I understand...

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