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Libertiene
Libertiene

Hi, I have had sleep problems my entire life however now they are affecting me majorly. I am quite healthy and i quit smoking 6 months ago. I am only mid 20's.

On Monday I had a goods night sleep but had to get up at 6am. I felt fine for about 1.5 hours then felt like I had not slept at all. I was at work and i could not concentrate, and could barely keep my eyes open. I would say I felt tired that i have not slept for 24 hours or more.

This happens if i force myself to get up early in the morning. If i get up at my own pace i do not get extremely tired during the day. I think i am getting around 7 - 8 hours sleep normally sometimes more.

This morning I was woken by my alarm and had a crazy experience trying to get up. I was not sure if i was awake or asleep and it was like battle to get up. I think i called out for help at some point but this may have been a dream. I eventually managed to get up and then starting from about 11am I have been very tired and cannot concentrate. I have been to the Doctors several times over the past few years and I get blank faces. I have tried loads of things but nothing seems to make any difference. Any ideas or know where I can get help?   

0 likes, 5 replies

5 Replies

  • craig84609
    craig84609 Libertiene

    Posted

    Have you been evaluated by a sleep doctor? You may have a form of narcolepsy. If you are in the USA then I would suggest trying a major University that has a medical school such as UCLA or UW. This can be very serious due to falling asleep at an instant. This can cause an auto accident .
  • richard89308
    richard89308 Libertiene

    Posted

    maybe you should look up chronic fatigue syndrome. that may be something to do with this.
  • lily65668
    lily65668 Libertiene

    Posted

    Sounds like it might be narcolepsy. The clincher for me is that false awakening you described. This is part of the Sleep Paralysis condition. Although almost everyone has at least one episode of this in their life, it's symptomatic of narcolepsy. And you're around the age where this condition tends to manifest (mid-teens to mid-twenties).

    If it is narcolepsy it can be managed - though not cured - by medication. General practitioners are notoriously ignorant of sleep disorders. I can only suggest that you absolutely insist on being referred to a sleep clinic, or refer yourself if you're in a country where you can do that.

    • Libertiene
      Libertiene lily65668

      Posted

      I mentioned narcolepsy to the doctor before and they said i don't have this because i don't randomly fall asleep during the day. However i can become uncontrollably tired but this is normally only in certain situations, for example a passenger on a long car journey or in a lecture. I remember lectures where i had to hold my eyelids open. I never previously thought this might have been part of the problem.

      I do have episodes when i am not sure if i am asleep or not. I was asleep once in a makeshift dormitory and i thought that the persons on either side of me jumped on me. This did not happen but i woke up in a panic like state.

    • lily65668
      lily65668 Libertiene

      Posted

      That's interesting. I have all the same problems as you, and so did my father and several members of his family. I have particular problems with sleep paralysis accompanied by hallucinations of the type you describe in the incident in the dorm, only very much worse in my case. Ditto my father.

      I too find it difficult to stay awake during periods when my mind isn't fully engaged. For this reason I've never dared drive. My father was even worse than me - fell asleep twice while riding his bike. I've also had two episodes of cataplexy during my life, which is another symptom of narcolepsy. As you probably know, sudden episodes of completely uncontrollable daytime sleep, sleep paralysis (including false awakenings) and cataplexy are the triad of symptoms required for a narcolepsy diagnosis.

      Like you, I was also told it couldn't be narcolepsy, and my father was told the same. We were both told it was hypersomnolence.

      I originally trained as a nurse (many years ago!) and specialised in neuro after I got my general qualification. Having had my first terrifying attack of sleep paralysis hallucination during the stressful run-up to my general exams, I was anxious to research this once I got access to the library in the neuro unit in those pre-internet days. What I read was that sleep scientists in those days (the books were written in the 1950/60s) believed that hypersomnolence was closely related to narcolepsy, and was probably a minor version of it.

      As far as I can make out from internet research, things have moved on since then and scientists now believe that hypersomnolence (more often called hypersomnia these days) is totally unrelated to narcolepsy, which is a REM sleep disorder. I'm not so sure, however, particularly having heard your story. It wouldn't be the first time sufferers of a particular condition have known far more about it than the scientists researching it!

      A grain of hope has now presented itself for me. In the past 25 years I seem to have had increasing problems with sleep apnoea. I have recently convinced my new doctor to refer me to a sleep lab, the previous one having always insisted I couldn't have sleep apnoea because women can't get it! (Doctors, eh...?) Unfortunately, the first appointment I was given coincided with my holiday so I'm now awaiting another one for the autumn. I'm really looking forward to the results of the sleep study, as I have a hunch it might show up some kind of anomaly of REM sleep. That's if I manage to get to sleep, of course. Paradoxically, I've often found it hard to sleep at night, even when I haven't allowed myself to sleep during the day!

      So, how does one cope with our problem? With great difficulty sometimes, but it's quite possible. I've never dared drive so have always made sure to live in areas with good public transport. I too can remember falling asleep in lectures, concerts, at the cinema etc., but this has in fact improved a bit with age (though I can still embarrass myself sometimes!) The sleep paralysis episodes come much less frequently with age too, and I've also learned how to cope with the related hallucinations, which can be quite terrifying.

      If you're interested, I can send you a private message with the results of the sleep test, but it won't be for quite a few months yet. You can private message me via this site any time you want to. To do that, just click on the envelope icon under the person's avatar. PMs don't reveal the email address or other details of either party.

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