Index › Support Center Forums › Diagnosis Process › Is it possible I have narcolepsy? Any advice?
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- January 26, 2021 at 1:34 pm #20689
Snufkin
ParticipantHello!
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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