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Surprising Symptoms of Narcolepsy

What are your most surprising symptoms of narcolepsy? How do you manage them?

  1. I process emotions extremely fast.
    - I believe that might be related to REM sleep and me feeling like I always have that going in the background (I can close my eyes and basically see dreamlike scenes, sometimes even with sound). I also have way too much REM in general (over 60% at my first testing and I tend to switch between REM and deep sleep all the time).
    On one hand, it's nice to "forget" the emotional attachment quickly and not hold small grudges. On the other, it has lead to weird situations where I basically forgot I had a fight with someone (usually my sister).
    - Also, I'm socially awkward with suspected autism, which helps about as much as my bad short time memory.

    1. She used to be confused by it more than anything. We don't fight often anymore. We also live a few hundred kilometers apart XD

    2. I am glad you don't argue so much anymore, . It would be very confusing for her, I am sure! - Lori (Team Member)

  2. For the 1st 30 years cataplexy only ever occurred around silliness and laughter. Not long into my dad’s diagnosis with Lewy Body Dementia one of his symptoms was not being able to find objects that were literally right where he’d already checked. The 1st time I went to look for an item that he’d already looked for and found it EXACTLY where I told him it was I hit the floor(well actually the bed as it was on his nights stand so I was lucky that time)!! When I described the incident to my specialist asking if “frustration” was a common trigger he grinned and said to me “nope, that’s mad\anger!! It continued to be a trigger(only I learnt to expect it) until my father could no longer do these things for himself and passed away; that was 7 years ago and anger/frustration has not triggered me since😳🙄🤷‍♀️

    1. Unfortunately vascular is one of the top 3 most prominent dementia’s; SO sorry for your loss. I took my PSW(healthcare worker) soon after my dad was diagnosed (ironically I was already considering the program!) so we could keep him home as long as possible and have worked privately with many families. Also why I am constantly 2nd guessing myself and my own mind after improper sleep cycles for 40 years😬😬

    2. Thank you, . How wonderful that you did that for your father. I am glad it has turned into a career path for you. Everything is always harder when you are the patient. You will probably second-guess yourself for another 40 years. 😀 But don't worry. We're here for you! Best wishes. - Lori (Team Member)

  3. Sleep anxiety. Waking up is such a horrible experience everyday that I've come to dread it to the point where I fight going to sleep at night.

    1. I can stress myself into waking up for important appointments - not for everyday use. Otherwise I do tend to wake up around 7.5-8h in, but staying awake is a problem. It's often a gamble of having enough energy to sit up and take my meds (and them helping enough - I'm currently switching stuff).

    2. I hope whatever medication you switch to is more effective and more reliable. How awesome that you are able to wake yourself up sometime. I hope you never lose that ability. - Lori (Team Member)

  4. Olfactory hallucinations

    1. Many people are surprised to hear they happen to anyone at all, . Olfactory hallucinations can be hard to conceptualize. I am sure it was strange to experience them those first few times. Best wishes. - Lori (Team Member)

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