narcolepsy..and everything that comes along with it

By ash01 Latest Activity March 18, 2011 at 6:31 pm Views 17,143 Replies 10 Likes 3


First off, I have narcolepsy, so I know why I'm so dang tired. But one thing I'm not sure of is why I get so scared at the LITTLEST things! When I'm sleeping, if the phone goes off, town siren, someone yells, or anything else that might wake someone up…I react almost as if im over-exaggerating being scared. I usually jump/ tense up really quickly and my heart starts beating "90 miles an hour." It's usually the result of loud sounds, sudden movements by someone else, something jumping in front of me, or startling me - so basically scaring me. It wouldn't bother me so much if it wasn't a regular occurance…sometimes over 20 times a day. It's very annoying and it's starting to affect my daily life because it happens so often. Any clues on if it's cataplexy or not? What I can do about it? Oh, and I would owe it to medication, but I'm not on any, that's why I'm so baffled.

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Replies (10 replies)

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  • sleepie girl
    sleepie girl February 9, 2014 at 6:31 pm   

    I get startled easily. I jump out of my skin when I'm sleepy and the phone rings or someone knocks on the door. I think it's because I'm not really awake when this happens, and it jars me back to reality. When I'm really asleep, however- I don't hear anything at all. Not thunder, my phone, ANYTHING. If I'm just falling asleep or waking up, I about go through the roof at any noise.

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  • NikoleJ
    NikoleJ May 26, 2011 at 6:41 am   

    I have the same problem! I've been diagnosed with mild narcolepsy. I usually take naps at work and my co workers are fully aware of not to startle me. I also am extremely jumpy like if someone walks up behind me and starts talking or if I turn the corner and not know someone is there. Not only does my heart race but I have a bad problem of actually screaming. It happens at least 10-15 times a day. I'm not in any meds as well and I've always chalked it up to bad nerves or anxiety I've also noticed I wake up extremely cold to were my teeth are chattering dont know if it's related but I've always assumed it was just some of those "everything that comes with it thing". I do def feel it's indirectly related to narco such as anxiety developed due to having narco not so much catpalexy. What I do to calm myself is relax breathing techniques http://www.chinese-holistic-health-exercises.... they really help.

  • tSquare
    tSquare March 21, 2011 at 11:32 pm   

    I agree with PlanetN that what you describe above isn't cataplexy at all. I have a friend, who doesn't have a sleep disorder, but they are hyper-sensitive to sudden noises and such and it gives them quite a startle and fright each time. I'm not sure if its something related to anxiety as PlanetN suggests, but it definitely isn't part of cataplexy. And, I doubt it is directly related to your narcalepsy either. That said, however, I could imagine (if this reaction hasn't always been part of you and only appeared with the narcalepsy) that you might be taking a bit of a micro-sleep snooz moment and the sudden noise kind of startles you awake perhaps. That is streatching things a bit to think that perhaps is going on. If you have always been startled the way you note to such things, since you were a kid or such, then it for sure wouldn't be a part of your narcolepsy but maybe only more noticed now by you. My friend has always been effected by sudden noises and things since they were a little kid.

  • Avera
    Avera March 21, 2011 at 12:34 am   

    Thanks for the excellent answer, PlanetN.

  • PlanetN
    PlanetN March 18, 2011 at 7:16 pm   

    Well, I can tell you it is NOT cataplexy. Cataplexy is losing control of your muscles while awake. Although it is commonly triggered by surprise, your description of jumping and tensing immediately rule out cataplexy.

    A heightened startle response is not exactly a symptom of Narcolepsy. It can be a symptom of an anxiety disorder, which could certainly be secondary to sleep deprivation from Narcolepsy. It could also be that you are such a light sleeper because of your Narcolepsy that you are easily startled out of sleep and that has spiraled to become a hypersensitivity that carries on through the day.

    You say you are not on any medications, but do you take vitamins? Herbs? Teas? Have a lot of caffeine? Many of those can trigger anxiety, nervousness, and increased heart rate.

    You may also have a tendency to have microsleeps or very short attacks of automatic behavior. You (and anyone else) may not even realize that you are not fully awake and aware, in which case it is startling to suddenly be snapped out of that state. Episodes like that can also have some hallucinatory aspects. I personally am constantly thinking I see movement out of the corner of my eye, people darting across the street when I'm driving, and animals in the road that aren't there. And that's not counting the all out hallucinations with sleep paralysis.

    As for how to prevent it from happening, that I don't know. You may want to look into meditation, yoga, or even biofeedback to help you relax more, manage stress, and just generally unwind. I doubt that would eliminate the incidents, but it would hopefully lessen them and make them less severe.

    Good luck!

  • fehin
    fehin March 21, 2011 at 2:43 pm   

    also with cataplexy you tend to live your dreams exp i often try push myself out of bed when i dream of getting out of a train and have often ended up hurting my self when i have banged into things i often get cataplexy attacks when i am playing a joke or telling a lie in fun my daughters can tell because my eyes flutter

  • tSquare
    tSquare March 21, 2011 at 11:43 pm   

    Yep, that sudden thump on the floor is a real 'eye-opener' when you were dreaming leaping off something and upon impact on the floor you go 'ouch!' and more sometimes. That isn't part of the cataplexy as I understand things, but likely more an aspect of the miss-placed REM state with our awake minds. That is part of narcolepsy, that our REM sleep state is TOO much into our awake state and such. That is why one can have the hypnagogic hallucinations even when you are supposedly 'awake' in the day. Narcoleptics basically dream while awake to a degree in one way to look at it more or less.

  • Chad's Mum
    Chad's Mum January 15, 2012 at 9:59 am   

    I know this might sound dumb, but I've had those hallucinations almost exactly how you described and I just figured it was a paranoia secondary to the Adderall I take to keep me from falling asleep at inappropriate times. Hmmmm…

  • fehin
    fehin March 22, 2011 at 4:17 pm   

    it was a neurologist who suspected i had cataplexy my doc sent me to have various tests and to see various docs i even had a cataplexy attack in one of the docs offices went all the way to the ground i had a bad habbit of walking with my hands in my pockets so i could not stop myself going down and he still did not diag it he thought i had had a fit anyway i saw a neurologist and had various tests with numerous leads attached to different parts of body which proved nothing but he was asking me questions and asked me about my dreams an if they were vivid he suspected i had caaplexy and i went to see a sleep spec and did some sleep studies and was diag me with narcopsey and cataplexy it got so bad if someone stoped me to ask for time or even a light i would get an attack my daughters would come looking fo me if i was gone too long when i walked to he shops i twice had ambulances clled for me .

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