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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?

Old Mar 18th 2014, 2:56 pm
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Default Re: Does anyone here have, or live with someone, or have experience with narcolepsy?

Originally Posted by scottishcelts
19 is quite young for the diagnosis. Many take till they are in their 30's before they even have an incline there is summit wrong. Mr SC put it down to babies and lack of sleep during the uni days. It reached it's peak 3 yrs ago and I forced him to go see the doc. Finally got the diagnosis last yr. It takes ages, lots of tests and sleep therapy but we got there.
I think it was the fact that a group of us were so concerned about him falling asleep at the drop of a hat that we almost dragged him to the doctor! He was a really keen student, but would regularly nod off in the middle of a lecture, and we gave him no peace till he did what we told him
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Old Mar 21st 2014, 1:24 pm
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Default Re: Does anyone here have, or live with someone, or have experience with narcolepsy?

Originally Posted by Pollyana
I think it was the fact that a group of us were so concerned about him falling asleep at the drop of a hat that we almost dragged him to the doctor! He was a really keen student, but would regularly nod off in the middle of a lecture, and we gave him no peace till he did what we told him
Wish I had known you at school, I went from A grade student to drop out due to falling asleep in every class Teachers labelled me everything from lazy to a waste of space, diagnosis wasn't confirmed till I was in my 30's.
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Old Mar 21st 2014, 1:42 pm
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Default Re: Does anyone here have, or live with someone, or have experience with narcolepsy?

Originally Posted by scottishcelts
My hubby has full blown narcolepsy (minus the cataplexy), and I was just wondering what others' traits are.
Hi from one Scot to another Pollyana pointed me this way as I just mentioned elsewhere that I have narcolepsy/idiopathic hypersomnolence with a sleep latency of just over a minute
Nobody really seems to know whether it's narcolepsy or IH as though I don't drop straight to REM, I do experience night time paralysis and hypnogonic hallucinations which are normally only associated with narcolepsy. Like your husband, my sleep episodes, up to 8 a day if not medicated, begin with me talking gobbledygook and slurring my speech - not just dropping straight to sleep as some people imagine narcoleptics do. The most embarrassing time was in the middle of Tesco, I started talking about castles and clouds before falling asleep across the trolley
When I was diagnosed, modafinil was the new wonder drug and said to have fewer long term side effects, after 13 years on modafinil I am not so sure....

Sorry your husband has been diagnosed with it and if there is anything I can do or any questions I can answer, just give me a shout on here or via PM.
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Old Mar 22nd 2014, 12:31 am
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Default Re: Does anyone here have, or live with someone, or have experience with narcolepsy?

Originally Posted by Rural Hungary
Hi from one Scot to another Pollyana pointed me this way as I just mentioned elsewhere that I have narcolepsy/idiopathic hypersomnolence with a sleep latency of just over a minute
Nobody really seems to know whether it's narcolepsy or IH as though I don't drop straight to REM, I do experience night time paralysis and hypnogonic hallucinations which are normally only associated with narcolepsy. Like your husband, my sleep episodes, up to 8 a day if not medicated, begin with me talking gobbledygook and slurring my speech - not just dropping straight to sleep as some people imagine narcoleptics do. The most embarrassing time was in the middle of Tesco, I started talking about castles and clouds before falling asleep across the trolley
When I was diagnosed, modafinil was the new wonder drug and said to have fewer long term side effects, after 13 years on modafinil I am not so sure....

Sorry your husband has been diagnosed with it and if there is anything I can do or any questions I can answer, just give me a shout on here or via PM.
Hi there

Mr SC goes straight to REM, never fails, which is so weird to see. That's how they pinpoint narcolepsy bang on. He has tried the Modifanol, worked for a while then basically didn't. He is happier on the Dexy's, considering they know more about them as they have been using them since the 1700's or whatever.
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Old Mar 22nd 2014, 10:19 am
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Default Re: Does anyone here have, or live with someone, or have experience with narcolepsy?

I'd pretend to sleep if i had to listen to you all day
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Old Mar 22nd 2014, 10:23 am
  #21  
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Default Re: Does anyone here have, or live with someone, or have experience with narcolepsy?

Originally Posted by Bernieboy
I'd pretend to sleep if i had to listen to you all day
I'd have drugged you anyway, then tortured you.
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Old Mar 22nd 2014, 10:24 am
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Default Re: Does anyone here have, or live with someone, or have experience with narcolepsy?

Originally Posted by scottishcelts
I'd have drugged you anyway, then tortured you.
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Old Mar 22nd 2014, 10:24 am
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Default Re: Does anyone here have, or live with someone, or have experience with narcolepsy?

Originally Posted by scottishcelts
I'd have drugged you anyway, then tortured you.
Now that could've been fun! Think of the profit from selling the photos
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Old Mar 22nd 2014, 10:28 am
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Default Re: Does anyone here have, or live with someone, or have experience with narcolepsy?

Originally Posted by Pollyana
Now that could've been fun! Think of the profit from selling the photos
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Old Mar 24th 2014, 10:44 am
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Default Re: Does anyone here have, or live with someone, or have experience with narcolepsy?

Originally Posted by scottishcelts
Hi there

Mr SC goes straight to REM, never fails, which is so weird to see. That's how they pinpoint narcolepsy bang on. He has tried the Modifanol, worked for a while then basically didn't. He is happier on the Dexy's, considering they know more about them as they have been using them since the 1700's or whatever.
Even in the time I have been diagnosed, the classifications have changed and IH is now believed to overlap with narcolepsy without cataplexy, which wasn't the case when I was diagnosed. On my medical records I'm diagnosed with narcolepsy though I don't fulfill the REM onset requirement for diagnosis. I do not feel rested after naps - which is normally only present in IH.
Amphetamine wasn't an option for me due to a family history of cardiomyopathy.
Modafinil has a different effect from the dexy's in that you don't essentially have extra energy, you just feel awake and extremely alert. What dosage of modafinil did they put him on?
If he is still experiencing sleep drunkenness on his meds then I would ask the doc to look at his dosage again as I only see it return if I miss my afternoon tablet. I'm supposed to take 1 on waking, 1 midday and 1 at 3pm but I find 2 on waking works better for me and I should really take the third around about 1pm but I usually forget and so skip it as if I take it at 3pm, I won't sleep until after midnight. When I miss this one, I can have episodes of sleep drunkenness or a sleep attack around about 5-6pm.
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Old Mar 24th 2014, 10:56 am
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Default Re: Does anyone here have, or live with someone, or have experience with narcolepsy?

I just re-read one of your posts scottishcelt, did your husband only start slurring his speech and speaking nonsense after starting the medication or have his sleep attacks always followed this pattern?
If it's only since starting the meds then it sounds as though the dosage isn't high enough or he is quickly growing tolerant to them.
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Old Mar 24th 2014, 11:55 am
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Default Re: Does anyone here have, or live with someone, or have experience with narcolepsy?

Originally Posted by scottishcelts
Hi there

Mr SC goes straight to REM, never fails, which is so weird to see. That's how they pinpoint narcolepsy bang on. He has tried the Modifanol, worked for a while then basically didn't. He is happier on the Dexy's, considering they know more about them as they have been using them since the 1700's or whatever.
I don't think I have narcolepsy but I do go straight into REM sleep very often. I can go to sleep, dream a vivid dream & wake back up within 15 mins, remembering the whole thing.
Since the kids were little I've also had a strange ability to sleep, via catnapping on the lounge, yet maintain the ability [albeit while snoring my head off] to be completely aware of their conversations with each other & my O/H. Deb has always been aware of it. The kids were oblivious, still are as far as I'm aware.
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Old Mar 24th 2014, 12:14 pm
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Default Re: Does anyone here have, or live with someone, or have experience with narcolepsy?

Originally Posted by cresta57
I don't think I have narcolepsy but I do go straight into REM sleep very often. I can go to sleep, dream a vivid dream & wake back up within 15 mins, remembering the whole thing.
Since the kids were little I've also had a strange ability to sleep, via catnapping on the lounge, yet maintain the ability [albeit while snoring my head off] to be completely aware of their conversations with each other & my O/H. Deb has always been aware of it. The kids were oblivious, still are as far as I'm aware.
Mmm.. I'd get theeself checked out.
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Old Mar 24th 2014, 12:30 pm
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Default Re: Does anyone here have, or live with someone, or have experience with narcolepsy?

Originally Posted by scottishcelts
Mmm.. I'd get theeself checked out.
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.
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Old Mar 24th 2014, 12:31 pm
  #30  
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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.
It's the whole straight to REM thing Cresta. Usually only narcoleptics that do that.
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