Does anyone here have, or live with someone, or have experience with narcolepsy?
#16
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Re: Does anyone here have, or live with someone, or have experience with narcolepsy?
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.
#17
Re: Does anyone here have, or live with someone, or have experience with narcolepsy?
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
#18
Re: Does anyone here have, or live with someone, or have experience with narcolepsy?
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.
#19
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Re: Does anyone here have, or live with someone, or have experience with narcolepsy?
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.
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.
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.
#20
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
#21
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#23
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#24
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#25
Re: Does anyone here have, or live with someone, or have experience with narcolepsy?
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.
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.
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.
#26
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.
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.
#27
Re: Does anyone here have, or live with someone, or have experience with narcolepsy?
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.
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.
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.
#28
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Re: Does anyone here have, or live with someone, or have experience with narcolepsy?
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.
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.
#29
Re: Does anyone here have, or live with someone, or have experience with narcolepsy?
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.
#30
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Re: Does anyone here have, or live with someone, or have experience with narcolepsy?
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.