Index Support Center Forums Living with N Excessive Daytime Sleepiness ……

  • This topic has 14 replies, 6 voices, and was last updated 3 years, 1 month ago by Wonderfulworld. This post has been viewed 608 times
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  • #1888
    AvatarJacky
    Participant

    Continuing this discussion from NN days – and the term sleep attack – can EDS be referred to as an episode?? Some episodes result in falling asleep, some episodes don’t, some last for a long time, others are shorter?

    #1890
    TheRabbitKingTheRabbitKing
    Keymaster

    I think about it in reverse of most people. I think of EDS as constant, but I get respites just like normal ppl will get second and third winds if they stay up way late.

    My current jam: Anathema - Springfield

    #1906
    AvatarJacky
    Participant

    So when EDS gets stronger at some point(s) in the day – what do you call that?

    #1907
    TheRabbitKingTheRabbitKing
    Keymaster

    I usually call it a wave of EDS/sleepiness. I don’t like “sleep attack” because it can lead to confusion among new PWN who might conflate it with cataplexy. However episode is probably even better. EDS episode…I like it 🙂

    My current jam: Anathema - Springfield

    #1912
    AvatarJacky
    Participant

    I’m just throwing words around here – I think improving the labels may help with awareness – Excessive Daytime Sleepiness is a poor label – makes people think you sometimes feel excessively sleepy – ie when you’re sleeping, but other times not – when you’re awake.
    Without wanting to over word it(!!):- an acute EDS episode is when you can’t stay awake

    #1915
    TheRabbitKingTheRabbitKing
    Keymaster

    If you want to submit an official write-up for EDS to add to here and talk about the difference between chronic and acute episodes, I will absolutely add it to this page 😀 https://www.narcolepsysupport.org/resources/sleep-disorder-codex/

    My current jam: Anathema - Springfield

    #1920
    AvatarJacky
    Participant

    Liking the codex page!!

    #2009
    JasonJason
    Keymaster

    @jacky I couldn’t agree more about the crappy labels. My favorite is irresistible sleep attacks. Like huh? You can’t resist them? Ever? There have only been a few times I absolutely couldn’t fight one. But based on the description, you’d think it’d be impossible. Sleep attacks tend to make me anxious weirdly, just like sleep paralysis. I feel like my body is betraying me so I have to fight. I feel a lot better if I give in but my God it’s hard for me to let go and give in.

    It seems most people associate sleep attacks as episodes of cataplexy, which is a totally separate entity. I blame the media.

    #2012
    TheRabbitKingTheRabbitKing
    Keymaster

    I get the anxiety during “sleep attacks” too, if they happen at work or some other time/place where I am forced to fight them. Even when the episode its over, it seems like I cant keep a salient thought in my head for the rest of the day. It just trashes my brain.

    My current jam: Anathema - Springfield

    #2014
    FerretFerret
    Moderator

    I don’t blame the media so much as I blame the “official” descriptions. Descriptions, incidentally, probably made by people who have not experienced the problems.
    I don’t get attacked by sleep episodes… but I do get “ambushed”. Anybody else feel this subtlety in language?

    #2017
    JasonJason
    Keymaster

    I feel like both are to blame. The media hurts it for laypersons and the official description hurts medical professionals that rarely encounter N like primary care physician.

    https://youtu.be/X0h2nleWTwI

    Classic cataplexy vs sleep attack confusion.

    #2049
    AvatarJacky
    Participant

    I think we have an opportunity here with DeathRabbit’s codex for PwN to create the definitions Def worth a shot!

    #2050
    TheRabbitKingTheRabbitKing
    Keymaster

    I’m gonna work on the medication section over the weekend. Figured I’d cover TCAs, SARIs, Stimulants (might break this up into amphetamine-based and ritalin-class drugs), the vigils, and Xyrem. If anybody has any good source material they know of and trust that I could use to write some good summaries, that’d be awesome.

    My current jam: Anathema - Springfield

    #2401
    AvatarMelster
    Participant

    Does anyone use wearables to try and bring you back to reality during EDS? I’m I’m looking for something I can wear that I can set a timer on to preferably vibrate vs. make any audible noise (I’ll be using this in an office setting). Fitbit works great but I can’t set and change the frequency of the reminders. Having a cell phone out all the time isn’t ideal either. Thanks in advance for the ideas!

    #3075
    AvatarWonderfulworld
    Participant

    EDS is that when you are tired all day or when you are okay and all of a sudden feel so tired you just want to sleep? Or is that sleep attack? I get anxiety, too, when I keep going. I usually go to bed if possible to avoid that.

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