FabSwingers.com mobile

Join us FREE, we're FREE to use

Web's largest swingers site since 2006.

Already registered?
Login here

Back to forum list
Back to The Lounge

Narcolepsy

Jump to newest
 

By *rabness92 OP   Man
over a year ago

Netherlands

Hi there

I was recently diagnosed with a chronic illness that has flipped my life completely. I’m super curious if anyone else on here has got it or knows someone.

Would love to hear you’re story’s and maybe you guys could give me some advice

Xx

Reply privatelyReply in forumReply +quote
 

By (user no longer on site)
over a year ago

I know a, person with narcolepsy and cataplexy at severe end of the spectrum. Feel for you, but it is manageable.

Reply privatelyReply in forumReply +quote
 

By *rabness92 OP   Man
over a year ago

Netherlands

Yeah it’s the cataplexy that is the most annoying. Oh thanks mate!

Reply privatelyReply in forumReply +quote
 

By (user no longer on site)
over a year ago


"Yeah it’s the cataplexy that is the most annoying. Oh thanks mate! "

Have you had it all your life and just not diagnosed? I think cataplexy is quite horrible, the person I know has a great sense of humour, but obviously with laughter, causes cataplexy. I once, unintentionally made the person laugh that much, they collapsed straight to floor but hit face off cupboard on the way down

Reply privatelyReply in forumReply +quote
 

By *rabness92 OP   Man
over a year ago

Netherlands

I started getting mild symptoms about two years ago, but 6 months down the line I started hallucinating, cataplexy was so extreme I’d collapse 3/4 times a day, sleep paralysis. I’ve been diagnosed for a year and I’m on xyrem GHB, it works but i still feel really tired and still have mild symptoms.

Ahh I know exactly what you’re friend is going through, last time I had a proper laugh was maybe a year ago haha. Aaah I’m not here for sympathy but its been extremely hard and draining.

Reply privatelyReply in forumReply +quote
 

By (user no longer on site)
over a year ago

This sounds horrible, sorry to hear that OP

Apart from the medication are there any lifestyle changes you could make to help ease the symptoms? I don't know much about narcolepsy but I know sleep paralysis is quite often linked to stress and anxiety. Hopefully your medication will even out though and you will get some of your energy back x

Reply privatelyReply in forumReply +quote
 

By *rabness92 OP   Man
over a year ago

Netherlands

Yeah I’m not allowed to have a drink or a smoke because I can end up in a coma because if the meds, I won’t be able to drive a car, I won’t be able to work as an electrician no more, I’m not allowed to work 40 hours a week.

It’s made me stronger as a person but than at times I think why me? Think I still have to accept it and that’s the hardest part.

Reply privatelyReply in forumReply +quote
 

By (user no longer on site)
over a year ago


"Yeah I’m not allowed to have a drink or a smoke because I can end up in a coma because if the meds, I won’t be able to drive a car, I won’t be able to work as an electrician no more, I’m not allowed to work 40 hours a week.

It’s made me stronger as a person but than at times I think why me? Think I still have to accept it and that’s the hardest part. "

God that does sound harsh but it doesn’t bring anything if you ask ‘why me?’ What’s the point in continuously asking a question that nobody can answer? Hard as it is, both these conditions can be contained and you can lead a happy life. It’s just flicking that switch in your head now so you can get on with it and believe me, I know how hard that is. Best of luck OP!

Reply privatelyReply in forumReply +quote
 

By *rabness92 OP   Man
over a year ago

Netherlands

No you are fully right, but it’s easier said than done. I have decided to speak to a councilor and considering a psychiatrist to keep my mental health in check.

Guys I truly appreciate the support x

Reply privatelyReply in forumReply +quote
 

By (user no longer on site)
over a year ago


"I started getting mild symptoms about two years ago, but 6 months down the line I started hallucinating, cataplexy was so extreme I’d collapse 3/4 times a day, sleep paralysis. I’ve been diagnosed for a year and I’m on xyrem GHB, it works but i still feel really tired and still have mild symptoms.

Ahh I know exactly what you’re friend is going through, last time I had a proper laugh was maybe a year ago haha. Aaah I’m not here for sympathy but its been extremely hard and draining. "

If I'm being totally honest with you, I'd do a bit of research into xyrem, as long term can be quite awful. There are other medications that may not be as harsh. I did a post a while back Neuralink and main reason for thread because of potential to cure Narcolepsy. My inbox is always open in you want to talk about anything, I'm no expert or anything, I know a fair bit about how it affects daily living.

Reply privatelyReply in forumReply +quote
 

By (user no longer on site)
over a year ago

I know of thus because I worked for a respiratory physician who specialised in the condition as well as sleep apnoea. He has retired now but did many studies and wrote articles about it. You must be devastated getting the diagnosis, but you seem very switched on into getting the help you need and I wish you well and I'm sending you hugs x

Reply privatelyReply in forumReply +quote
 

By *rabness92 OP   Man
over a year ago

Netherlands


"I know of thus because I worked for a respiratory physician who specialised in the condition as well as sleep apnoea. He has retired now but did many studies and wrote articles about it. You must be devastated getting the diagnosis, but you seem very switched on into getting the help you need and I wish you well and I'm sending you hugs x"

Oh yeah they thought I had sleep apnea in the beginning so I went to sleeping center, but the physician realized that I was going into REM sleep way to quick and my sleep cycle was fully messed up, i was then transferrd to a neurological specialist.

Thank you so much, means so much to me x

Reply privatelyReply in forumReply +quote
 

By *rabness92 OP   Man
over a year ago

Netherlands


"I started getting mild symptoms about two years ago, but 6 months down the line I started hallucinating, cataplexy was so extreme I’d collapse 3/4 times a day, sleep paralysis. I’ve been diagnosed for a year and I’m on xyrem GHB, it works but i still feel really tired and still have mild symptoms.

Ahh I know exactly what you’re friend is going through, last time I had a proper laugh was maybe a year ago haha. Aaah I’m not here for sympathy but its been extremely hard and draining.

If I'm being totally honest with you, I'd do a bit of research into xyrem, as long term can be quite awful. There are other medications that may not be as harsh. I did a post a while back Neuralink and main reason for thread because of potential to cure Narcolepsy. My inbox is always open in you want to talk about anything, I'm no expert or anything, I know a fair bit about how it affects daily living. "

This is not the first time I hear this, but honestly at this point in time ..I don’t really care about the consequences. I’m happy that I get SOME sleep now and I’m slowly getting my life back.

I have tried all sorts of meds, was a test dummy for a good 9 months and all them didn’t work as good as the xyrem, they always tend to use heavy anti depressants that make me feeel drowsy, sick, makes me gain weight and when I stop you start feeling suicidal.

A cure? That would be a miracle right?

Reply privatelyReply in forumReply +quote
 

By (user no longer on site)
over a year ago


"I started getting mild symptoms about two years ago, but 6 months down the line I started hallucinating, cataplexy was so extreme I’d collapse 3/4 times a day, sleep paralysis. I’ve been diagnosed for a year and I’m on xyrem GHB, it works but i still feel really tired and still have mild symptoms.

Ahh I know exactly what you’re friend is going through, last time I had a proper laugh was maybe a year ago haha. Aaah I’m not here for sympathy but its been extremely hard and draining.

If I'm being totally honest with you, I'd do a bit of research into xyrem, as long term can be quite awful. There are other medications that may not be as harsh. I did a post a while back Neuralink and main reason for thread because of potential to cure Narcolepsy. My inbox is always open in you want to talk about anything, I'm no expert or anything, I know a fair bit about how it affects daily living.

This is not the first time I hear this, but honestly at this point in time ..I don’t really care about the consequences. I’m happy that I get SOME sleep now and I’m slowly getting my life back.

I have tried all sorts of meds, was a test dummy for a good 9 months and all them didn’t work as good as the xyrem, they always tend to use heavy anti depressants that make me feeel drowsy, sick, makes me gain weight and when I stop you start feeling suicidal.

A cure? That would be a miracle right? "

I feel for you mate, obviously I don't fully know what it's like, have seen how hallucinations can be so horrible and getting some half decent sleep. The person I knows was a bit like a Guinea pig at the start.

Yes, it wouldn't be short of a miracle, it's not something that'll happen in the near futire, but the potential for it to help neurological disorders. The last time spoke to a neurologist he mentioned a nasal spray that trials are being done (very early stages)

Reply privatelyReply in forumReply +quote
 
 

By *rabness92 OP   Man
over a year ago

Netherlands


"I started getting mild symptoms about two years ago, but 6 months down the line I started hallucinating, cataplexy was so extreme I’d collapse 3/4 times a day, sleep paralysis. I’ve been diagnosed for a year and I’m on xyrem GHB, it works but i still feel really tired and still have mild symptoms.

Ahh I know exactly what you’re friend is going through, last time I had a proper laugh was maybe a year ago haha. Aaah I’m not here for sympathy but its been extremely hard and draining.

If I'm being totally honest with you, I'd do a bit of research into xyrem, as long term can be quite awful. There are other medications that may not be as harsh. I did a post a while back Neuralink and main reason for thread because of potential to cure Narcolepsy. My inbox is always open in you want to talk about anything, I'm no expert or anything, I know a fair bit about how it affects daily living.

This is not the first time I hear this, but honestly at this point in time ..I don’t really care about the consequences. I’m happy that I get SOME sleep now and I’m slowly getting my life back.

I have tried all sorts of meds, was a test dummy for a good 9 months and all them didn’t work as good as the xyrem, they always tend to use heavy anti depressants that make me feeel drowsy, sick, makes me gain weight and when I stop you start feeling suicidal.

A cure? That would be a miracle right?

I feel for you mate, obviously I don't fully know what it's like, have seen how hallucinations can be so horrible and getting some half decent sleep. The person I knows was a bit like a Guinea pig at the start.

Yes, it wouldn't be short of a miracle, it's not something that'll happen in the near futire, but the potential for it to help neurological disorders. The last time spoke to a neurologist he mentioned a nasal spray that trials are being done (very early stages) "

Well all we can do is hope for best and who knows!

Reply privatelyReply in forumReply +quote
Post new Message to Thread
back to top