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Xyrem And Alcohol


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#1 Joiner

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Posted 04 November 2013 - 01:22 PM

Hi!

 

I've recently been prescribed Xyrem (finally!) and I'm really looking forward to start taking it. However, these last six months I've started drinking quite a lot. Not too much of course but I've been going out every or almost every weekend and, not to sound stupid or anything, but it has really helped me become more social and getting my social-life in order. The problem now is, as most of you probably know, that Xyrem is not to be combined with alcohol. Which really sucks.

 

Anyways, I've been thinking about it and I'm kinda wondering if it still would be okey for me to go out once in a while to drink? I do realize that I cant go out as often as I used to before but would it really be impossible for me to go out and drink like every second month or so?

 

And while were at it, if I would go out and drink, which doses should I skip? Obviously I should skip the doses I was planning to have that evening/night I'm going out, but do I need to skip the doses of the previous night as well? For example, if I start drinking at 8 in the evening then it have been 16 hours from my latest dose (4, in the middle of the night) and an entire 16 hours seems pretty much to me.

 

Answers to this would really be appreciated. I'd also like to hear of your experiences with combining Xyrem and alcohol if you have any.

 

Thanks :)



#2 Ferret

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Posted 04 November 2013 - 02:58 PM

IMHO, combining alcohol with Narcolepsy is about the dumbest thing any PWN can do.

 

http://www.psycholog...r-brain-alcohol



#3 ironhands

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Posted 04 November 2013 - 03:05 PM

Especially since xyrem=GHB, big date-rape drug when it wasn't so tightly regulated



#4 supertired

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Posted 05 November 2013 - 06:35 AM

Be honest with the Xyrem nurses.  They will tell you.  Beware.  They may stop you from your new found "joy".

 

I don't think alcohol is good for anyone, personally, but you are free to make your own decisions.  I'd hate for you to drive with an unexpected side affect and hurt yourself or someone else.  I have a DUI and it has seriously complicated my life in no ways I imagined.  It was the single dumbest thing I have ever done.

 

What aspects of it are making you feel social?   I drank to excess in college because it made me more social, too.  It made me more social because I didn't like myself.  As I grew up and grew as a person I learned to interact with people and women sober on a whole different level.

 

I'm not saying you have low self-esteem or anything.  I was just curious by what you meant when you said it's making you more social. 



#5 Jillybean1688

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Posted 05 November 2013 - 08:44 AM

Honestly, I think you can drink you just need to be careful and aware. I wouldn't drink more than 2 drinks. I have been on Xyrem for 3 years and I usually drink one weekend a month, sometimes less sometimes more. I would stay away from hard alcohol if possible and sip on wine or a beer or two. I've had some really scary side effects of drinking to get drunk and narcolepsy. I have major cataplexy when drunk and lose all muscle tone. I would make sure when you're drinking to have a trusted person with you who is familiar with your narcolepsy and to help you know your alcohol limits. Talk to your nurse about the side effects. They might wonder if you're ready for Xyrem.



#6 ironhands

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Posted 05 November 2013 - 09:10 AM

I was drinking most weekends until last year.  The stimulant effect of the alcohol really helped me get out of bed and actually doing something.  I wasn't really able to focus or enjoy any hobbies without a drink or two in me.  That was before my diagnosis, and now I have problems when I drink; my tolerance has gone out the window.



#7 Joiner

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Posted 05 November 2013 - 05:17 PM

IMHO, combining alcohol with Narcolepsy is about the dumbest thing any PWN can do.

 

http://www.psycholog...r-brain-alcohol

 

Well I've done it lots of times and it has never had any seriously unexpected affect on me.

 

Be honest with the Xyrem nurses.  They will tell you.  Beware.  They may stop you from your new found "joy".

 

I don't think alcohol is good for anyone, personally, but you are free to make your own decisions.  I'd hate for you to drive with an unexpected side affect and hurt yourself or someone else.  I have a DUI and it has seriously complicated my life in no ways I imagined.  It was the single dumbest thing I have ever done.

 

What aspects of it are making you feel social?   I drank to excess in college because it made me more social, too.  It made me more social because I didn't like myself.  As I grew up and grew as a person I learned to interact with people and women sober on a whole different level.

 

I'm not saying you have low self-esteem or anything.  I was just curious by what you meant when you said it's making you more social. 

 

Yeah I'm more afraid that they'll stop me taking Xyrem. I also would never drive while under the influence of alcohol, or any other drug else for that matter, so I'm not really sure why you're bringing it up here. But I still appreciate your feedback :)
 
Yeah I guess you have a point in what you're saying about drinking to become social, however I still don't intend to stop it.

 

Honestly, I think you can drink you just need to be careful and aware. I wouldn't drink more than 2 drinks. I have been on Xyrem for 3 years and I usually drink one weekend a month, sometimes less sometimes more. I would stay away from hard alcohol if possible and sip on wine or a beer or two. I've had some really scary side effects of drinking to get drunk and narcolepsy. I have major cataplexy when drunk and lose all muscle tone. I would make sure when you're drinking to have a trusted person with you who is familiar with your narcolepsy and to help you know your alcohol limits. Talk to your nurse about the side effects. They might wonder if you're ready for Xyrem.

 

I'm sorry to hear that, it's gotta be rough on you.

 

I'd like to think I know my alcohol limits quite well, and I've never had any serious/dangerous side-effect while drinking yet.

 

Could you tell me if you skip any of your doses of Xyrem when you go out to drink, and if you do, which ones?

 

I was drinking most weekends until last year.  The stimulant effect of the alcohol really helped me get out of bed and actually doing something.  I wasn't really able to focus or enjoy any hobbies without a drink or two in me.  That was before my diagnosis, and now I have problems when I drink; my tolerance has gone out the window.

 

Well that doesn't sound very healthy :P.

 

I really appreciate all your posts, please keep them comming :)



#8 ironhands

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Posted 05 November 2013 - 05:22 PM

Meh.  Alcohol's always been a positive stimulant and mood stabilizer for me.  Did wonders for slowing down my brain.  Was the only way I could function on weekends, and now that I'm off it, I lay in bed all weekend lol.  It's not like I was getting hammered or anything, just sipping a beer or a rum and coke, maybe one drink every 1.5-2 hours.



#9 Ferret

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Posted 05 November 2013 - 09:56 PM

Sigh! Joiner, why are you asking for advice when you have no intention of listening to it or following it? I suspect that you are fairly young...and you remind me of a sign I once saw..."Quick! Hire a teenager while they still know everything."

I am glad that you've experienced no problems with drinking and N. Obviously some of us here are expressing our experiences. I probably have two drinks a year...one for my birthday and one for my hubby's birthday. I dance up a storm and have a great time...at the time....and I feel like total crap for at least two days afterwards. It's simply not worth it to me to give up my "precious daily functional time" to something as trivial as drinking alcohol and having a blast for a few hours.

I sincerely hope your future experiences are different than mine. Please remember that you will have N for a lifetime...not a short time.

I've been living with N with C for 27 years since diagnosis at the age of 35.



#10 ironhands

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Posted 05 November 2013 - 10:17 PM

Please remember that you will have N for a lifetime...not a short time.

 

That, and it often gets worse over time



#11 Hank

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Posted 05 November 2013 - 10:57 PM

You can't put an old head on young shoulders.

 

Drink responsibly. Don't mix alcohol and Xyrem in the same night- one or the other. And don't confuse a buzz with charisma- the two rarely go together. And keep safe- N can make you into a sloppy drunk fast.



#12 Ferret

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Posted 05 November 2013 - 11:07 PM

Geez Hank, I would have preferred you said "You can't put an experienced head on inexperienced shoulders" ;)

 

@Ironhands...

That can be true (the getting worse)...and it did for me over the course of five years...but then it levelled off and stayed the same for many years. Maybe it took a while to completely toast all my Orexin producing neurons or, maybe I just got smarter and better at managing my life and lifestyle to minimize my symptoms.

At this moment in time, I'm doing better and feeling better than in the last 30 years.



#13 Hank

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Posted 05 November 2013 - 11:15 PM

Geez Hank, I would have preferred you said "You can't put an experienced head on inexperienced shoulders" ;)

 

@Ironhands...

That can be true (the getting worse)...and it did for me over the course of five years...but then it levelled off and stayed the same for many years. Maybe it took a while to completely toast all my Orexin producing neurons or, maybe I just got smarter and better at managing my life and lifestyle to minimize my symptoms.

At this moment in time, I'm doing better and feeling better than in the last 30 years.

So sorry. You do not have an old head. Glad you are feeling and managing well.



#14 Joiner

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Posted 06 November 2013 - 10:25 AM

Sigh! Joiner, why are you asking for advice when you have no intention of listening to it or following it? I suspect that you are fairly young...and you remind me of a sign I once saw..."Quick! Hire a teenager while they still know everything."

I am glad that you've experienced no problems with drinking and N. Obviously some of us here are expressing our experiences. I probably have two drinks a year...one for my birthday and one for my hubby's birthday. I dance up a storm and have a great time...at the time....and I feel like total crap for at least two days afterwards. It's simply not worth it to me to give up my "precious daily functional time" to something as trivial as drinking alcohol and having a blast for a few hours.

I sincerely hope your future experiences are different than mine. Please remember that you will have N for a lifetime...not a short time.

I've been living with N with C for 27 years since diagnosis at the age of 35.

 

What are you referring to? I think you've misunderstood me.

 

And yes, as a matter of fact I am quite young, 18 years old to be exact.

 

 

That, and it often gets worse over time

 

I sure don't hope that's the case for me, since I (not to sound naive or anything) consider my narcolepsy/cataplexy to be pretty severe.

 

 

You can't put an old head on young shoulders.

 

Drink responsibly. Don't mix alcohol and Xyrem in the same night- one or the other. And don't confuse a buzz with charisma- the two rarely go together. And keep safe- N can make you into a sloppy drunk fast.

 

Thanks for your advice, I'll definitely keep them in mind.



#15 Hank

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Posted 06 November 2013 - 10:48 AM

There is an enormous difference between 18 year olds who party with their friends and 18 year olds who party to make friends.

 

Drinking to make friends (aka improve your social life) indicates a sadness and a problem that will fester.

 

If you want friends and a social life, consider sports, church or music. However, those things require a level of personal interest which you may lack. It is often easier to gravitate toward others with low expectations of themselves.

 

A Narcoleptic who drinks t make friends is the equivalent of a diabetic who eats donuts to make friends.

 

So, your choices make you who you are and who you will become- and your friends are a reflection of that. It just sounds mediocre to me, unless there is some spark that you have not mentioned. But some people are happy with mediocrity- it is sooo easy to attain.



#16 ironhands

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Posted 06 November 2013 - 10:49 AM

If it's already "bad" it might not be possible to get worse, for those with mild symptoms it still has room to deteriorate.  My thoughts is that once the C starts, you're pretty much at the worst point, but I can't say since I don't have C.



#17 ironhands

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Posted 06 November 2013 - 10:51 AM

There is an enormous difference between 18 year olds who party with their friends and 18 year olds who party to make friends.

 

Drinking to make friends (aka improve your social life) indicates a sadness and a problem that will fester.

 

If you want friends and a social life, consider sports, church or music. However, those things require a level of personal interest which you may lack. It is often easier to gravitate toward others with low expectations of themselves.

 

A Narcoleptic who drinks t make friends is the equivalent of a diabetic who eats donuts to make friends.

 

So, your choices make you who you are and who you will become- and your friends are a reflection of that. It just sounds mediocre to me, unless there is some spark that you have not mentioned. But some people are happy with mediocrity- it is sooo easy to attain.

 

My "boozing" was mostly just to push away the physical aspects of depression and low energy, so if I was going to be with people, I'd often have a drink to compensate so I wouldn't just be sitting around grumpy and tired lol.



#18 Ferret

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Posted 06 November 2013 - 11:09 AM

If it's already "bad" it might not be possible to get worse, for those with mild symptoms it still has room to deteriorate.  My thoughts is that once the C starts, you're pretty much at the worst point, but I can't say since I don't have C.

 

C can get worse too. Mine started with just the knees buckling and then to full body collapse in about four years. That was bad enough. Getting off the Tofranil that was prescribed for the Cataplexy brought on "rebound" Cataplexy which was even worse...very frequent attacks in the course of a day which were very debilitating and exhausting. Then I got mad and started taking charge of my life and responsibility for the consequences of my lifestyle choices. Everybody's different and it takes time and effort to find out what works best for the individual.



#19 Hank

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Posted 06 November 2013 - 11:18 AM

Here is my understanding of how N and C progress.

 

Once the Orexin cells are gone, they're gone. Some of us are left with some and others left with none. So, it is essentially a stable condition in terms of progression.

 

Once Orexin is knocked out, we start building up a sleep debt that increases over time. I think of it like a rudderless ship- once the rudder is gone, the ship is essentially adrift. What makes the situation worse is no longer about the rudder, but about where the ship begins to drift- how far and how long.

 

Our N symptoms are identical to the symptoms of sleep deprivation. So, the loss of Orexin cells allows the process of sleep deprivation to occur.

Nothing will make us better and many things will make us worse- in terms of functioning. Late nights and little sleep only ads to the sleep debt and makes our symptoms worse. We will never be well. The best we will be is well managed. The worst we will be is poorly managed.

 

So, how mild or severe we are is impacted by 2 factors:

1. What percentage of Orexin neurons have we lost- some, most or all. We have no control over this.

2. How well does our lifestyle manage the accumulation of sleep debt. We have considerable control over this.

 

Regarding Cataplexy, there seems to be more unknowns, but here is how I make sense of it.

 

There are 2 aspects of REM sleep- dreams and paralysis (atonia- so we don't act out our dreams).

 

Once the rudder is broken, it flaps back and forth. So, the paralysis meant only for nighttime dream sleep suddenly flap over during wake.

 

The daytime REM paralysis is triggered by sudden and strong emotions- positive and negative.

 

Whatever emotions you experience most strongly will become your strongest Cataplexy triggers. So, if you are a giggly person, laughter will likely become a strong trigger for cataplexy. Whatever you feel strongly will serve as a trigger.

 

Stress and lack of sleep will often make cataplexy more pronounced. Not surprisingly, most people experience emotions more strongly when they are stressed and overtired.

 

This is how I make sense of this to myself. I hope it helps.



#20 Ferret

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Posted 06 November 2013 - 11:40 AM

Interesting analogy Hank.

It's also important to still do maintenance and keep the ship in good repair. This also has an interesting side effect of keeping the sailor in a state of positive moral.  You wouldn't want to develop dry rot and sink.