Index Support Center Forums Diagnosis Process Is it possible I have narcolepsy? Any advice?

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    SnufkinSnufkin
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    Hello!
    I am happy to have found this forum, and I would like to ask for some input, as I am considering if it’s possible I have narcolepsy and if I should look into it more.
    Sorry for the long text! And for any mistakes, as English is not my first language (I live in Sweden).

    My main question right now, that I can’t seem to find much about when I search, is if narcolepsy can come and go in periods?

    The thing is, I’ve been so damn tired ever since about 2013 (I was 26 then, now 33).
    But I do have periods when I am feeling less tired, sometimes for a few days, or weeks, or even a couple/few months. (All of these timeframes I am unsure about, because I feel my memory and sense of time is so crappy. So I have recently started keeping a diary of my sleep habits.)
    Those periods of more energy seem to come hand in hand with a better mood – if I am feeling better because I am less sleepy or the other way around, I am not sure!

    I would appreciate so much if anyone could chime in with their thoughts. Is it possible I have narcolepsy?

    Depressions etc:
    I feel like I have been tired and/or exhausted for so long that I’m unsure what is ”normal” or not.
    Around 2012-2013 I started very slowly feeling more and more exhausted. After some time I discovered I had iron deficiency – I got treated for this and I thought it helped but probably just weeks later I started feeling tired again.
    About the same time I was also getting burnt out from stress, which led to also depression and increased anxiety. Eventually got over this (sort of).
    But I also have periods of depression or just feeling low every now and then, and general anxiety (probably ever since teenage years and still today). And recently I may have experienced another burnout and/or depression. So it’s all a bit of a mess to figure out what is what.

    Tiredness:
    I often feel like I am exhausted, and/or like a wave of super heavy tiredness comes over me and I have to fight very hard to stay awake – often happens when I sit still and do something and can be fought off if I manage to get up and move around and stay active – but sometimes I can’t fight it and simply nod off, and at that point I give up and go and lay down on the couch.
    Sometimes I am just desperate for a nap which can be quite weird in social situations.
    (I have been working from home ever since 2013 – with exception of a few months here and there for project work at an actual workplace – so I can easily take naps when needed which I often do.)

    I usually feel rested after short naps, I fall asleep quickly and have dreams during the naps. A nice nap can be 20 min, or sometimes knocks me out for 3h.
    I usually sleep a lot and can sleep for veery long if I have no alarm and still don’t feel rested. When I sometimes do wake up feeling rested, I often feel very sleepy again just an hour or two after waking up in the morning.
    I feel like I can go very quickly from feeling awake to feeling sleepy and wanting to nap asap.

    Often I wake up a lot during the night but fall back asleep quickly. But sometimes I go out like a light and sleep very heavily and for very long. Some nights I sleep 11-13h, sometimes I have an alarm wake me up after 8h or 9h but I still feel exhausted and just fall back asleep, sometimes I don’t even remember the alarms going off.
    But then some periods (when Im in a good head space?) I can sleep 7-8 hours and be quite alert the whole day and feeling good – but this usually lasts for maybe days to a week or two at most, I think. Generally I do sleep a lot and still feel tired.

    Also, if it is relevant, I have quite poor memory, both short term and also long term. Also brain fog and often feel like my mind is very slow.

    Cataplexy:
    This is the reason I started considering if I have narcolepsy. I have experienced a feeling like all my muscles go weak and my knees bend under me for just a second, while I am standing up and suddenly laughing out loud.
    It’s not so much that I fall to the ground, I regain control after a sec in mid-fall. This has happened maybe 5 times in total and first time about a year ago. I suspect that I just don’t notice it if I sit down, it has only happened when I’ve been standing and laughing.
    I wonder if this is cataplexy and/or if there could be any other explanation for it.

    Hypnagogic hallucinations?
    Another thing I read about on this forum that I hadn’t actually thought much about, but sometimes I see or hear things as I am about to fall asleep.
    Like I see totally random and weird images before me and sounds/voices. I am still awake when it happens. Often it is faces I see and/or hear someone speaking. It’s not like I think there is actually someone in the room or hear a voice from outside myself, it’s more soort of like a dream. It happens when I have closed my eyes, but not yet fallen asleep, and I am still in control of my body.

    But I also have periods of energy?
    What makes me uncertain of narcolepsy, are these periods when I feel quite energized.
    But I feel I have such poor memory and sense of time, so it’s hard to pinpoint and explain!
    But what I can say right now is that the last couple of months I believe I have been depressed – and because of it been very tired/exhausted.
    Now the last two weeks I’ve been in a better mood and I don’t feel very tired, most days I have not felt a great need for naps during the days. Does this mean I can’t have narcolepsy, and it is just connected to my mood, I don’t know.

    If anyone managed to read all of this: thank you! 😀

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