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Does anyone here have, or live with someone, or have experience with narcolepsy?

Does anyone here have, or live with someone, or have experience with narcolepsy?

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Old Mar 24th 2014, 12:45 pm
  #31  
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Default Re: Does anyone here have, or live with someone, or have experience with narcolepsy?

Originally Posted by cresta57
Maybe I should do a little more research then lol. It's not been a problem but lately I've found I sleep so heavily I wake up with pins & needles in my arm as I've laid on it for way to long. I put it down to working 3 weeks straight the first time. Weird until I read this thread I hadn't even considered it a problem.

Via Mr SC;
Do you have difficulty staying awake when you need to? another sign is the inability to stay awake, even if you are standing up, no matter how hard you try. The sleep doc explained that if you look at wakefulness and sleeping as either ends of a piece of string then narcoleptics have a small shoelace and normal sleepers have a tow rope.

Last edited by scottishcelts; Mar 24th 2014 at 12:51 pm.
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Old Mar 24th 2014, 2:21 pm
  #32  
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Default Re: Does anyone here have, or live with someone, or have experience with narcolepsy?

Originally Posted by scottishcelts
It's the whole straight to REM thing Cresta. Usually only narcoleptics that do that.
Then to confuse things even more, recent studies show that not all narcoleptics (without C) go straight to REM and folk with sleep apnea can experience straight to REM - my hubby has this but it's an easy one to spot because of the snoring and gasping
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Old Mar 24th 2014, 3:09 pm
  #33  
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Default Re: Does anyone here have, or live with someone, or have experience with narcolepsy?

Originally Posted by Rural Hungary
Then to confuse things even more, recent studies show that not all narcoleptics (without C) go straight to REM and folk with sleep apnea can experience straight to REM - my hubby has this but it's an easy one to spot because of the snoring and gasping
Agreed.

I meant to reply to you earlier actually. Yes Mr SC was doing the slurred speech before the meds (he reckons), I'm not entirely sure though, I can't remember him being that bad. I think the Dexy's and a combo of sleepyness cause the drunk effect.
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Old Mar 24th 2014, 9:15 pm
  #34  
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Default Re: Does anyone here have, or live with someone, or have experience with narcolepsy?

Originally Posted by Rural Hungary
Then to confuse things even more, recent studies show that not all narcoleptics (without C) go straight to REM and folk with sleep apnea can experience straight to REM - my hubby has this but it's an easy one to spot because of the snoring and gasping
Snoring & gasping sounds more like it. The O/H reckons I stop breathing some nights
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Old Mar 24th 2014, 9:53 pm
  #35  
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Default Re: Does anyone here have, or live with someone, or have experience with narcolepsy?

Originally Posted by cresta57
Snoring & gasping sounds more like it. The O/H reckons I stop breathing some nights
....but you start again ok when she removes the pillow from your face?
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Old Mar 24th 2014, 10:56 pm
  #36  
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Default Re: Does anyone here have, or live with someone, or have experience with narcolepsy?

Originally Posted by cresta57
Snoring & gasping sounds more like it. The O/H reckons I stop breathing some nights
Does sound more like apnea.
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Old Mar 25th 2014, 6:40 am
  #37  
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Default Re: Does anyone here have, or live with someone, or have experience with narcolepsy?

Originally Posted by Pollyana
....but you start again ok when she removes the pillow from your face?
Yep I often wake up with a sore throat, Deb blames the snoring but it doesn't account for the bruising around my neck....
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Old Mar 25th 2014, 12:17 pm
  #38  
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Default Re: Does anyone here have, or live with someone, or have experience with narcolepsy?

Originally Posted by cresta57
Snoring & gasping sounds more like it. The O/H reckons I stop breathing some nights
Classic apnea, hubby stops breathing 7 or 8 times a night - though he doesn't realise he is doing it.... I usually dig him with an elbow to get him started again A Cpap machine should sort it out for you though there are different causes of sleep apnea and surgery is available depending on the cause. Definitely worth speaking with your doctor as it can be sorted without meds.
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Old Mar 25th 2014, 8:57 pm
  #39  
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Default Re: Does anyone here have, or live with someone, or have experience with narcolepsy?

Originally Posted by scottishcelts
Agreed.

I meant to reply to you earlier actually. Yes Mr SC was doing the slurred speech before the meds (he reckons), I'm not entirely sure though, I can't remember him being that bad. I think the Dexy's and a combo of sleepyness cause the drunk effect.
I can only speak from my personal experience and whilst slurred speech is normally associated with N +C, I'm 99% certain I don't have C though I do have slurred speech and "dream talk" as the kids call it. From memory, if I did have it pre meds, it wasn't to the extent it is now as I can't really recall many episodes of it. So, either the meds are causing it or it is worsening as time goes by.
What I think might be happening is that when I have an episode of slurred speech, usually followed by "dream talking" then sleeping, the meds are preventing me from falling asleep as I would have done pre meds. At that time, the meds aren't strong enough to stop me having a sleep attack but there is enough in my system to create a state where I am slipping into REM but still functioning, this would explain the slurred speech as the muscles start relaxing. The only solution is an increase in medication
There was a recent study showing they think both N without C and IH are connected to the GABA receptors, I was going to ask my consultant about the possibility of trying Flumazenil - though I believe it is only available as an injection.
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