- 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
- July 18, 2017 at 12:55 pm #1888JackyParticipant
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?July 18, 2017 at 1:10 pm #1890TheRabbitKingKeymaster
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.July 18, 2017 at 4:40 pm #1906JackyParticipant
So when EDS gets stronger at some point(s) in the day – what do you call that?July 18, 2017 at 4:44 pm #1907TheRabbitKingKeymaster
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 🙂July 18, 2017 at 5:22 pm #1912JackyParticipant
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 awakeJuly 18, 2017 at 5:33 pm #1915TheRabbitKingKeymaster
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/July 18, 2017 at 6:04 pm #1920JackyParticipant
Liking the codex page!!July 20, 2017 at 10:42 am #2009JasonKeymaster
@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.July 20, 2017 at 11:02 am #2012TheRabbitKingKeymaster
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.July 20, 2017 at 11:33 am #2014FerretModerator
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?July 20, 2017 at 11:46 am #2017JasonKeymaster
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.
Classic cataplexy vs sleep attack confusion.July 20, 2017 at 5:25 pm #2049JackyParticipant
I think we have an opportunity here with DeathRabbit’s codex for PwN to create the definitions Def worth a shot!July 20, 2017 at 5:51 pm #2050TheRabbitKingKeymaster
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.July 29, 2017 at 7:38 am #2401MelsterParticipant
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!August 15, 2017 at 9:57 am #3075WonderfulworldParticipant
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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