Index Support Center Forums Living with N Narcoleptic Sleep & Dreaming

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  • #8386
    AvatarD@G
    Participant

    I wanted to create a place where people could discuss their experiences with dreaming be it lucid or otherwise.

    I have a few things I wanted to discuss but for now I wanted to know if anyone else experienced feeling really crappy after sleeping in a physical sense (not just being tired still) and having to almost wait 10 or so minutes to “reboot” and things to return to normal?

    #9135
    WV_narcolepticWV_narcoleptic
    Participant

    Started symptoms of narcolepsy around 1987. Diagnosed 1999. Started Xyrem 2011. Between symptoms and diagnosis I had dreams that were very vivid in color and I had all senses. If something happened in the dream I could actually feel it. I used to dream I dropped something and then, while still asleep, would leap out of bed to catch it.
    A few years after diagnosis, my symptoms changed and I couldn’t get to sleep at all. I would lie awake all night and if I did fall asleep I would be asleep for a couple hours then wake up. I had no dreams then. Since I started taking Xyrem I dream what I would consider normal dreams.

    #9159
    AvatarIDreamofNapping
    Participant

    My experience before Xyrem was that I seemed to be dreaming all night long, in one continuous saga that changed characters and plot points gradually over a long stretch, instead of separate, distinct dream stories. And I could wake up slightly and decide to go back into the same dream I came out of. And the next night, as soon as my head hit the pillow, I’d flashback right into the last dream I was having that morning when I woke up.

    I had dreams within dreams… in my dream, I decide to take a nap, then I have another dream, then I “wake up” and tell my dream-mates about the dream I just had! On more than one occasion, I had a dream-within-a-dream-within-a-dream! I out-dreamed “Inception”!

    Nightmares were never really scary, because when things got bad, I could tell myself it was just a dream, so I could change it! That was convenient!
    Now that I’m on Xyrem, I don’t notice any dreams until it’s almost time to wake up, so they’re not so long anymore. I still flashback to them as soon as I lie down again, though.

    #9169
    Avatarnincolorado
    Participant

    Ah the dreams! The one thing about narcolepsy I miss. I’ve been on Xyrem for the last several months and my dream have becoming boringly normal.

    I used to revel in my dreams; interacting with them and changing them as I liked. It was better than watching a movie because I could feel, hear, and taste them with such vivid realness. And in the morning I could recount every detail such as the color of eyes or the stitching in my jeans.

    The musical ones were best. Has anyone experienced a dream like this? Music is playing and I could hear the music and feel the music because I was music. The most beautiful otherworldly songs composed of light that left me anticipating what the next note would feel like. Such joy and peace; i do miss it.

    My last recurring dream before Xyrem lasted about 9 months. Several times per week I dreamed I was wolverine from the Xmen. It was about the time the Logan movie came out and I’m not gonna lie; it was pretty awesome. I was Logan and could feel those claws coming out of my knuckles. They hurt at first but after 9 months I got really good at it in my dream and could make them come right out.

    Sounds crazy…I know…

    #9222
    WV_narcolepticWV_narcoleptic
    Participant

    Yes! I used to dream dreams with original music. Songs with original lyrics that actually made sense.

    #10930
    sweettsunadesweettsunade
    Participant

    I do feel crappy in the morning and am very happy that my doc has kept me on armodafinil. I also use caffeine when necessary.
    I don’t have lucid dreams, but my dreams are crazy ridiculous. I have them 2 or 3 times a night, and thankfully they dont follow me far into the waking world. I have dreams that involve death, rape, murder, and not the action-adventure/ cheer the hero kind. But I take it as an indication I’ve gotten some sleep because I used to get no slow-wave sleep and little REM sleep, just going in and out all night long.

    #20041
    AvatarLaces1989
    Participant

    I have been diagnosed with IH due to sleep latency under 8 min, a few naps under 4 min, but with no early rem periods on my psg and mslt with no obvious positive signs of cataplexy (although some signs of maybe having it). Most of the dreams I remember are what I would describe as very scary or emotion nightmares. Dreams that don’t make sense (my son is dead but he floats around the house bobbing up and down like a balloon-I cry because I’m so overcome with grief knowing he is dead and seeing him when I know he can’t be real and that the dream can’t be real-but I can’t stop crying anyway). I often cry in my sleep and come “in and out” of dreams. Sometimes I wake up from a nightmare so scary I feel sick and I’m sweating. I often can’t fall back asleep for hours. I have “reoccurring dreams” where I feel I dream the same thing or that they basically have the same story line-also nightmares. I also have dreams inside dreams, where I think I have a bad dream and then I wake up, tell my husband about the dream because I feel so scared, only to realize there is a boy in my room staring at me and I’m just frozen in terror and can’t speak. I then wake up and realize I was really still asleep, and I’m facing the same direction I was when I saw the boy. I’ve either slept walked into different rooms when I semi-consciously thought I was heading to the bathroom and then got very frightened and ran back to my bed panicking that I wasn’t in control of my own body. My husband then tells me he thinks I dreamed the whole thing and that I didn’t go anywhere or leave my bed-but I remember feeling the clothes when I realized I was in a closet and not opening the door to the bathroom.

    Sometimes I have a very hard time waking up and I’m confused for quite some time. I used to have a problem where I would turn my alarm clocks off across the room and not even remember it, being late for work. I would set multiple. Sometimes I hear noises in my dream and slowly wake up to hear them in real life. Once I was watching someone’s kids and I fell asleep (after kids were in bed). The parents came home and tried to wake me. They said I was hard to wake. When I came to I could hear the questions they were asking and I tried to respond but I couldn’t talk. It went on for about 5 minutes before I started talking and was slurring my speech. I was worried they would think I was on drugs!

    Before I started stimulants I would often fall asleep and realize I was dreaming. Like I would realize I was hearing or seeing funny things but I would be aware of it. That’s how I knew I was leaving consciousness. Not sure if it was dreams or thoughts or what but they were never bad. Since I started modafanil and adderall I rarely have these dreams or visions as I fall asleep. They haven’t changed my nightmares much. I do feel a lot more rested in the day and I can wake up without the headaches or confusion. I have a harder time falling back asleep when I do wake up at night then before the meds but I wake up just as much as before the meds. Some nights I wake up over 15 times a night and remember it. I toss and turn a lot. Not sure how much is normal but it seems excessive. It’s often during dreams but not always during one, at least not that I remember. I’m not sure why I wake up. During my psg they said I had a normal amount of arousals.

    Thanks for listening! I’m happy I’ve gotten treatment and I’ve had a significantly quality of life improvement. I still sleep about 10-11 hrs a day.

    #20308
    FerretFerret
    Moderator

    I have had Narcolepsy with Cataplexy for a very long time… was diagnosed in 1985. That said, I have had LOTS of time to experiment with choices in foods etc.
    The ONE thing that will guarantee me to dream and toss and turn all night is eating ANYTHING with monosodium glutamate in it. It has many, many names so be careful. Artificial food colourings are another. We are all unique but those two food additions really do a number on me in terms of quality of sleep and they are found in the majority of pre packaged convenience foods… no soup for me unless I make it from scratch… same for Mac ‘n Cheese.
    Alcohol also screws with your sleep.
    And so does sugar. I will still have uncontrollable sleep episodes during the day IF I consume sugar.
    Make choices that make you the best you can be and that starts with improving the quality of your sleep. Stimulants are only half the battle.

    #24779
    Pereise1Pereise1
    Participant

    Nice to read all of your experiences with sleep and dreaming, it lines up with my own experience pretty good. Since starting stimulants 5 years ago, I also stopped having hallucinations and paralysis before going to sleep. They didn’t help with the dreams though and I’ve more or less managed those with baclofen and CBD. I’ve dabbled in trying to lucid dream before but have never actually achieved and instead, have had deeper dreams that leave me feeling completely unrefreshed in the mornings. The subject matter of my dreams is usually never enjoyable. Lots of dreams where someone is pursuing my wife and I. Death and destruction are common. Sometimes on the “lighter” side, I’ll have these really realistic dreams where I’m hanging out with a long lost friend who I’ve either had a falling out with or who have died. When I wake up, it usually takes a few crushing minutes before I realize that it was just a dream.

    It’d be nice to know why my dreams took a turn for the worse when I developed Narcolepsy. I would have constant nightmares as a kid when I lived in a house with mold growing on the walls but when we moved out when I was 9, my dreams became like everyone else’s dreams I guess until the first Narcolepsy symptoms showed up at age 17.

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