scottishcelts

My hubby has full blown narcolepsy (minus the cataplexy), and I was just wondering what others' traits are.

Pollyana

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....!!

scottishcelts

Thanks Polly It's very difficult. My hubby appears drunk some days when he isn't. (not that anyone believes him, being a Scot lol). Some days he looks like Rab C Nesbit.

odyssey

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

Pollyana

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

carolinephillips

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.

scottishcelts

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.

Kim67

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.

scottishcelts

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.

Kim67

Haha, you poor thing - does it get worse or can it miraculously go away?

scottishcelts

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.

Kim67

Terrible for you both. Hope he stays on top of it.

scottishcelts

Pollyana

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.

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.