Im so happy I found your channel. It feels very comforting hearing someone else’s experience and that I’m not alone because No one around me understand it’s not as easy as drinking a coffee and just think I’m lazy etc. hearing your acceptance and fear and facing it and being optimistic is so helpful. Also it’s so good to have a resource to learn.
I had the best time recently when I got to meet a few others on a zoom call. It's a montly meeting and I feel it isn't enough. I wanted it but even more need it. I definitely want to make more videos about the subject. 🤞 Hope I have the energy tomorrow. These past few days I feel like I might need another up of mg or a change of meds again. 😕 But it could be a hinch because of my cycle I always get worst before and during... Anyhow. You look amazing. 😊
I can absolutely relate. I can have a few decent days and then suddenly I feel like a melting marshmallow. I used to get upset whenever I couldn’t get things done on my marshmallow days. Lately, as soon as I know the plans I made won’t be executed, I pick something chill to do, binge watch The Mandalorian, bust out a simple artsy, fun project or write. They’re things I enjoy that sometimes end up inspiring or motivating me. It can feel like a full time job being kind to ourselves (at least it is for me) but it’s so worth it. I’m not a tattoo girl but if I got one, it’d say “You’re exactly where you’re supposed to be right now. Everything’s gonna be okay.”
Everyone act's different to news like this. For me it was freeing to findout about my narcolepsy. Cause I then had a name and something I could look up about. As soon as I started researching, everything was just clicking in my head. I go into rem in 4-8min. The first time I heard people don't go into rem till being asleep for like a hour and they go through a sleep cycle. That was just funny to me.
You are so right. Ultimately, it WAS comforting to know what the heck was going on. I had a feeling I had some hidden superpowers. Turns out, I can get to REM sleep in 30 seconds. At least that's what happened on one of my MSLT naps. I thought that was a good thing when I first saw it. However, like you, once I saw "normal" sleepers don't get there for nearly an hour, I think I laughed!
Hello, about to start XYREM to treat N w/ C. Like many I have tried a million stimulants at deadly high doses. After watching your videos and reading comments (everyone here is so helpful!!) I realize the importance of finding a dose and # of doses that works for me. On top of that, do you use a stimulant during the day or afternoon? Am I allowed to use caffeine? (I’m have N so I started a coffee company haha!) Thank you
Hi Benjamin! I'm so glad you're finding the videos and comments helpful. You are EXACTLY why I do this. As far as Xyrem plus stimulants goes, I only combined one stimulant with Xyrem, modafinil (Provigil), and it was for a very short period of time when I had lowered my Xyrem dose super low and needed help staying alert. I stopped taking Xyrem a while ago, my memory sucks, thanks narcolepsy, but I think I stopped about 8 months ago. I couldn't deal with the side effects that slowly creeped up on me. However, I thought it was god's gift to mankind when I first started it. Yes, I did sleep with Xyrem but I got to the point where I was so miserable when I was awake I had to stop it altogether. I do drink coffee. Some people with narcolepsy avoid caffeine completely along with other things like, gluten, soy, sugar, etc. If I was you, I'd do an experiment and see if you feel better without it. I do feel better without coffee and yet, there I am every morning, excitedly awaiting the beep on my Mr Coffee with my mug in hand. :)
