Does anyone here have, or live with someone, or have experience with narcolepsy?
#1
Chan eil aon chànan gu le
Thread Starter
Joined: Feb 2009
Location: On the ning nang nong
Posts: 22,437
Does anyone here have, or live with someone, or have experience with narcolepsy?
My hubby has full blown narcolepsy (minus the cataplexy), and I was just wondering what others' traits are.
#2
Home and Happy
Joined: Dec 2002
Location: Keep true friends and puppets close, trust no-one else...
Posts: 93,806
Re: Does anyone here have, or live with someone, or have experience with narcolepsy?
My closest friend at college was diagnosed with it back in 1982, apart from having drugs of some kind to take, and not being able to drive for a few months after diagnosis, he has lived a normal life ever since......well, not totally normal, cos he supports Leeds United, but apart from that....!!
#3
Chan eil aon chànan gu le
Thread Starter
Joined: Feb 2009
Location: On the ning nang nong
Posts: 22,437
Re: Does anyone here have, or live with someone, or have experience with narcolepsy?
My closest friend at college was diagnosed with it back in 1982, apart from having drugs of some kind to take, and not being able to drive for a few months after diagnosis, he has lived a normal life ever since......well, not totally normal, cos he supports Leeds United, but apart from that....!!
#4
BE Enthusiast
Joined: Feb 2010
Posts: 666
Re: Does anyone here have, or live with someone, or have experience with narcolepsy?
Hi! How bloody odd! I never come on here anymore and look at what I found on my visit! My mother has narcolepsy very badly, she has taken part in a number of medical studies as she has full on, perfect diagnosis material. She has cataplexy but I am not sure she always had that presentation, I cant remember it before I was about 9 years old. I have mild narcolepsy - I'll chat to you though on another medium, save me writing it all without any interaction! Viv
#5
Home and Happy
Joined: Dec 2002
Location: Keep true friends and puppets close, trust no-one else...
Posts: 93,806
Re: Does anyone here have, or live with someone, or have experience with narcolepsy?
My friend has always been teetotal, but he used to appear drunk at times, until they stabilised his meds. Nowadays you would never know he has a problem I will email him this week though and see what more i can find out
#6
Re: Does anyone here have, or live with someone, or have experience with narcolepsy?
I used to be onstage with someone who had it- it usually involved poking him awake in the wings as that was where he'd "sleep". However sometimes he did it onstage, so that meant trying to improvise - and the director trying to keep him moving rather than letting him sit too much. He was a wonderful baritone, so glad he kept going. He'd fall asleep on the train too, but luckily lived at the end of the line, so didn't miss his stop.
#7
Chan eil aon chànan gu le
Thread Starter
Joined: Feb 2009
Location: On the ning nang nong
Posts: 22,437
Re: Does anyone here have, or live with someone, or have experience with narcolepsy?
Yip, the hubby has it full on, and falls asleep all the time, mostly in his meeting and seminars at work, and even in the work toilets! I think they need to revise his meds because more often than not he appears drunk and the speech is terrible, that overly slurred way. He was taking the expensive medication that's amphetamine free but the Dexy's actually work better for him,he just needs high doses of them.
#8
Re: Does anyone here have, or live with someone, or have experience with narcolepsy?
We had a guy come to visit us from the US a few years ago and he had it. He warned us about it but it was really strange - he would fall asleep mid sentence, we'd all look at each other and then continue conversation without him, then 15 minutes later he'd wake up and continue with the sentence he was half way through when he nodded off. Very weird condition, must be so frustrating to have it.
#9
Chan eil aon chànan gu le
Thread Starter
Joined: Feb 2009
Location: On the ning nang nong
Posts: 22,437
Re: Does anyone here have, or live with someone, or have experience with narcolepsy?
We had a guy come to visit us from the US a few years ago and he had it. He warned us about it but it was really strange - he would fall asleep mid sentence, we'd all look at each other and then continue conversation without him, then 15 minutes later he'd wake up and continue with the sentence he was half way through when he nodded off. Very weird condition, must be so frustrating to have it.
If the hubby is about to 'crash', he starts rolling his eyes and starts mumbling a load of crap, then he's gone, and I am left in mid sentence and it's all over.
#10
Re: Does anyone here have, or live with someone, or have experience with narcolepsy?
Yeah and if people don't know a person has it, it just seems rude and makes the person think they are really boring
If the hubby is about to 'crash', he starts rolling his eyes and starts mumbling a load of crap, then he's gone, and I am left in mid sentence and it's all over.
If the hubby is about to 'crash', he starts rolling his eyes and starts mumbling a load of crap, then he's gone, and I am left in mid sentence and it's all over.
#11
Chan eil aon chànan gu le
Thread Starter
Joined: Feb 2009
Location: On the ning nang nong
Posts: 22,437
Re: Does anyone here have, or live with someone, or have experience with narcolepsy?
On the meds for life. Never goes away, just need to keep taking the meds and stay on top of them, though generally, they only keep a person at 'normal' levels. Very scary indeed.
#13
Chan eil aon chànan gu le
Thread Starter
Joined: Feb 2009
Location: On the ning nang nong
Posts: 22,437
#14
Home and Happy
Joined: Dec 2002
Location: Keep true friends and puppets close, trust no-one else...
Posts: 93,806
Re: Does anyone here have, or live with someone, or have experience with narcolepsy?
Its a life long condition, my mate was diagnosed at 19, lived with it ever since and he is now in his mid-50s. I really think the meds need looking at, Andrew struggled at first while they played with the dosage, but after about a year he was fine, you would never know he has it. He travels a lot to remote places like Tibet and Nepal without a second thought, and works as a supervisor in a police communications centre - that alone shows how controlled it is. Can't see why Mr SC shouldn't be the same, it really sounds like the dosage/drug type needs reviewing.
#15
Chan eil aon chànan gu le
Thread Starter
Joined: Feb 2009
Location: On the ning nang nong
Posts: 22,437
Re: Does anyone here have, or live with someone, or have experience with narcolepsy?
Its a life long condition, my mate was diagnosed at 19, lived with it ever since and he is now in his mid-50s. I really think the meds need looking at, Andrew struggled at first while they played with the dosage, but after about a year he was fine, you would never know he has it. He travels a lot to remote places like Tibet and Nepal without a second thought, and works as a supervisor in a police communications centre - that alone shows how controlled it is. Can't see why Mr SC shouldn't be the same, it really sounds like the dosage/drug type needs reviewing.