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Awake but not awake

Posted , 6 users are following.

drowsybunny
drowsybunny

Hi, I'm a 16 year old teen and I was diagnosed with narcolepsy with cataplexy a year ago.

Recently I've been noticing something kind of strange. I sometimes take naps in the afternoon and my mom will wake me up sometimes to ask me if I want to go if she's going out somewhere. I usually have no memory of this.

I'm told I'll sit up and speak as if I normally would and my eyes are open and I look normal and awake. I'll go back to sleep when I'm left alone I guess, but I do not recall this. I often wake up and freak out about the house being empty so I'll call my mom and she'll tell me I told her I wanted to stay home and sleep or that I told her I didn't want to go.

What do you think is causing this? I'm sort of frightened by the thought of being conscious but having no memory of it.

1 like, 13 replies

13 Replies

  • Theg
    Theg drowsybunny

    Posted

    Mayb you need to get the drs to explain the conditions you have been diagnosed with. Maybe what you are experiencing is a part of those disorders. Mayb they can tell you how to manage it. Good luck.....
  • Lawdawg
    Lawdawg drowsybunny

    Posted

    Sounds like something that needs to be discussed with your doctor
  • Lee1988
    Lee1988 drowsybunny

    Posted

    Yes this is beyond what we can tell you I'm afraid. See you doctor, good luck and for what it's worth some people can be very forgetful when woken up from a deep sleep so hopefully it's just that.

    Lee.

  • lily65668
    lily65668 drowsybunny

    Posted

    Hi drowsybunny (lovely name btw!)

    You say you've been diagnosed with narcolepsy/cataplexy, but you don't say whether or not you're receiving medication. I'm wondering whether you're on ritalin or similar, as this can cause sleep effects.

    I'm also wondering whether you might be suffering a disorder of non-REM sleep as well, related to sleepwalking. Narcolepsy tends to be tied in to disorders of REM (dreaming) sleep but a lot of people have both. Speaking from personal experience here. I have both sleep disorders myself, though my REM sleep disorder only goes as far as hypersomnolence, not full-scale narcolepsy, and I've only had two attacks of cataplexy in my entire life (both under extreme stress).

    Can you ask your mom whether you sleepwalked as a child? If the answer is yes, this is going to be an extension of your sleepwalking, possibly heightened by medications.

    You should tell your doctor about this, as you might need a change of medication, but it's nothing to be scared about.

     

    • drowsybunny
      drowsybunny lily65668

      Posted

      Hi (thank you c: )

      I'm currently on 40mg of Vyvanse for narcolepsy and I think 75mg of Venaflaxine for the cataplexy (not sure if you know what Venaflaxine is but it's an antidepressant that works for both my depression and cataplexy and the vyvanse is a stimulant).

      I've been told I've slept walk a few times as a child, but not often but I don't anymore. Recently my grandmother and mom gave told me every few months I'll scream my mom's name really loud in my sleep like I'm scared but I don't recall it. I've also been told sometimes I sleep talk or laugh in my sleep.

    • lily65668
      lily65668 drowsybunny

      Posted

      Sounds like this is just an exaggeration of a tendency you already had, possibly brought on by the meds. People who sleepwalked as children usually stop doing it as they get older, but in some of these individuals the sleepwalking is replaced in adult life by other disturbances of non-REM sleep. The talking, laughing, screaming in your sleep is typical of a minor non-REM sleep disorder, and nothing to worry about. I've done that kind of thing (and worse!) all my life, and I'm still here at age 72.

      But as you have a diagnosis and are on medication, you should still mention this to your doctor at the next visit.

    • AnxietyJess
      AnxietyJess drowsybunny

      Posted

      Hi,

      I would speak to your doctor about it! But from experience my best friend used to and still sometimes suffers with night terrors! She'll wake up in the middle of the night screaming and shouting and then often doesn't remember what has happened when I used to tell her in the morning! So sounds to me the screaming part sounds like that, as for the waking up and talking Could be linked with night terrors but I'd deffo speak to a doctor!

      Hope you get better soon x

    • lily65668
      lily65668 AnxietyJess

      Posted

      Yes, that's what I was referring to in my earlier posts, where I referred to a "non-REM" sleep disorder. I didn't want to panic drowsybunny any further, but I've suffered from night terrors all my life, doing just what you're describing, and more. The only difference is that I remember most of my episodes, though I'm often a bit hazy as to why I was behaving like that. NT sufferers are divided approximately half-and-half between those who remember their episodes and those who don't.

      While I agree that drowsybunny should mention this to her sleep doctor next time she sees him, I'd also say that the condition isn't serious and is in fact notoriously difficult to treat - unlike narcolepsy, which can be managed with medication. It does, however, tend to wear off with age. There's absolutely no urgency about seeing a doctor. I've had NTs all my adult life and have chosen never to seek medical advice, since I know there's so little that can be done about them. (I'm a former neuro nurse, btw.)

      Don't worry too much about all this, drowsybunny. You're being treated for your narcolepsy, which would be the greater problem if it went untreated. By all means mention this latest development to your doc at the next opportunity, but it's nothing to be scared about.

      And I'm sorry if I'm getting your gender wrong, drowsybunny - I'm just guessing you're a girl. No judgement intended if you're a boy. I'm an old lady now, but I've known some gorgeous bunnymen in my time!wink

  • Lizzie46881
    Lizzie46881 drowsybunny

    Posted

    Hi there

    I used to share a house with a friend who had narcolepsy/catplecsy and who had exactly the symtpoms you described.  We woukld have conversations and she would totally have no recollectiopns of them.  She is an intellugent woamn without demenbtia or anything like that so it was kind of odd at first but she just alerted her friends to it and we all look out for her.

    Good luck, hoping that you realise you aren't alone in this helps

    Lizzie

    • lily65668
      lily65668 Lizzie46881

      Posted

      That just reminded me of another point. I inherited my mild tendency to narcolepsy from my father, who had it far worse than me. His mother and a couple of his brothers had it too. He often told me that when his youngest brother talked in his sleep, the others were able to have an intelligent conversation with him by holding one of his big toes. It seems the big-toe holding was essential for this to work!

      They all grew up quite normal, apart from a tendency to fall asleep very easily.

    • drowsybunny
      drowsybunny lily65668

      Posted

      Really? I've never heard of something like that, that's interesting. I had split homes as a kid so I was raised in two households in two very different ways. My stepmother was an awful insomniac and when I'd stay with her I'd stay up extremely late when I was really little, and sleep until 2pm. When I'd go back to my mother's I'd still do that but I was suppose to be sleeping and wasn't allowed to sleep so late.

      None of my family members really have any sleep issues other than my grandma and stepmother. My grandma use to sleep eat.

    • lily65668
      lily65668 drowsybunny

      Posted

      Sleep-eating is another part of the non-REM sleep disorder, though narcolepsy is associated with REM sleep disorders. I didn't find out till my mid-50s that it was relatively common to have both types of disorder. Since my REM sleep disorder is the one that causes most problems, I'd always kept quiet about the other one, as I didn't want to feel like I was some kind of weird hypochondriac, claiming every sleep disorder known to man! It wasn't till I joined a forum for the REM disorder that I noticed something like a third of posters reported both.

      I suspect your childhood sleep disruption might have a lot to do with some of your sleep problems, though I think it's unlikely it would have caused narcolepsy. At least two of us posting on this particular thread had circumstances that severely disrupted our sleep pattern - in early adulthood in our cases, rather than childhood - and are now stuck with sleep problems as a result.

      But the good news is that it's possible to work around most sleep disorders and have a perfectly normal life, even if they can't be completely cured.

  • richard89308
    richard89308 drowsybunny

    Posted

    I feel really sorry for how you are suffering with this. you must be in hell. At least your mother is around most of the time to help.  But she has to work I guess so it wont be easy for her either.  Try to go with the flow of your illness and learn how to cope with it. Hard I know but I am thinking about you. Good name drowsy bunny very appropriate.

    rich

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