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Narcolepsy And Marijuana


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#1 orange

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Posted 09 August 2008 - 10:23 PM

Hi! Iím a 20 year old college student who was diagnosed with narcolepsy (w/out cataplexy) about a year ago. I am currently taking 30mg of adderall XR during the day along with xyrem at night.

I also smoke weed a fair bit.. Obviously there are potential implications that go along with smoking weed especially when youíre narcoleptic, and iíve tried to use reasonably good judgment in that regard over the last year. I enjoy smoking weed and truly feel that getting high (in moderation) is often a very beneficial experience for me personally. At this point in my life, at least.

So naturally i at least want to understand the effects of marijuana on narcoleptics, but there is a surprising lack of information on the subject. I know smoking weed can make EDS worse (duhh) and that it doesnít necessarily promote the best quality of sleep...

What else should I know? better yet, what experience has anyone had in this arena?

for example, one of my biggest concerns has to do with taking xyrem at night. If iíve smoked within 2-3 hours, i avoid taking the xyrem. This is simply because i have no clue how the 2 drugs would interact.

but remember: ANY information at all is welcome! thanks

#2 Marcianna

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Posted 09 August 2008 - 11:22 PM

QUOTE (orange @ Aug 10 2008, 04:23 AM) <{POST_SNAPBACK}>
I know smoking weed can make EDS worse (duhh) and that it doesn't necessarily promote the best quality of sleep...


First I would like to say that I am not against anyone smoking. There are of course worse things in the world that you could be doing. As long as it is in moderation and done reponsibly.
I also have not heard any info about drug reactions, or effects.

That being said:
Water makes my EDS worse. I dont take bathes, only showers and I always sit in the tub just incase so I dont fall, I haven't been swimming since I was a little kid. I put off doing dishes till I absolutly have to and even then I never clean the silver wear or anything sharp. I leave that for someone else.
Riding in cars makes my EDS worse. I have never had my license and never intend too.
Eating certain foods makes my EDS worse. This includes caffeine. I avoid it at all cost. Along with those foods.

I LOVE swimming. I miss bathes desperately. I would like to clean my kitchen a little more often. I desperately wish I could drive and not be reliant on others. And I sooooo miss morning coffee with my friends. (decaf is for wussies!!!!)

Do you see what I am getting at here?

Sadly there are sacrifices we have to make because of our conditions. It sucks but for our own safety, and in the case of driving, the safety of others. We make them. I would much rather be awake enjoying as much as I can of my life than sleeping an extra 3 hours cuz I snuck in a cup of coffee. And I would hate to have my love ones have to drag me out of a bath tub dead someday.

I'm not saying smoking pot is bad. but in your case I would definately say it is irresponsible. I certainly hope your not driving.
Obviously you are still young. And I am willing to bet the fun and novelty of being high will wear off some day. Why not just get a head start? just quit now. Honestly with the economy being as it is I am willing to bet there are better ways you could be spending your money. So be a rebel and find a new hobbie! It could be totally fun! You may suprise yourself.



I'm not some square who has never done any kind of drugs. I have a rather colorful past actually, so I really do know what I am talking about here. wink.gif You really should think hard about this. Sorry if I sound preachy. smile.gif

#3 Marcianna

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Posted 09 August 2008 - 11:29 PM

Oh I forgot to add, When you turn 21, (or even now) Alcohol is not a great idea either. so go out celebrate your 21st and then seriously,SERIOUSLY..... limit yourself. I myself maybe go out for a couple drinks maybe a couple times a year. There are all kindsa crazy concoctions that can be made at a bar that are non alcoholic. try em out, Everyone else usually is already smashed so they wont be to awful concerned about your light wheight status. wink.gif And if they are, they will also be the ones thanking you in the morning for getting them home and holding their heads while they puke. Ha ha! It's actually quit amusing.

#4 greatbig47

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Posted 10 August 2008 - 12:08 AM

Welcome aboard, orange!
Glad to have you as part of our quickly growing community!

All medicating is self medicating. While all the drugs in Heath Ledger's apartment came to him via slips of of white paper signed by "doctors", he chose to take them.

I'm willing to bet you've been using weed longer than Xyrem. Pot has amazing medical benefits, and I'm constantly puzzled why it's illegal. With a friend of a friend I've talked to, it actually has little to no effect on their EDS. They've experienced an interest in what is around them enough to stay alert. Keep in mind actual highway milage will vary.

You know what these three drugs do individually, but I would HIGHLY caution you from allowing these chemicals to mix inside your system at all. WHile I have zero problems with the use of weed, I would think bucking the norm of it's use would be more benificial at this point in your life.

That probably wouldn't be so much the case if you weren't taking Xyrem and Adderall, but you have to admit...Those 2 medications aren't exactly light-weights. If they were, you'd get them over the counter.

At the risk of sounding older than dirt, you are in the drug experiment days of your life...Oh, and you happen to also be narcoleptic. Please exercise caution. Consider stretching and challenging to see what you are capable of without any drugs...at least the weed.

If you ever wanted to know when the best time in your life would be to exercise good judgment, you're livin' it.

Good luck, and keep us posted!

-Stu

#5 Damian

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Posted 10 August 2008 - 06:30 AM

In my case I did use to smoke weed, I don't anymore cause of the cocktail of drugs Im on,
But I found that I wuld have an extra 5-10 seconds warning of a cataplexy enough time to
move from anything that I would fall into. I have told my GP this. I no longer smoke weed.
As for the baths I also have shower but sat in the tub, had enough marks bumps bruises etc
from falling, when stood up. if I try to have a really shallow bath I will wrap the chain from he plug around my big toe and turn my foot if I feel an attack coming on.

#6 RipVanWinkle

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Posted 10 August 2008 - 11:09 AM

I used to smoke a lot of weed, and actually found it helped me sleep better at night. I really enjoyed the whole ritual and smoking with a group of friends. The down side was it totally trashed my memory. I used to have a really good memory, weed reduced this to needing to write lists for everything. My memory is screwed now and it's not down to weed, it's down to sleep deprivation from narcolepsy. I would also find the next day that my cataplexy would be a little worse. I'm talking about over ten years ago here BTW.

I think it's probably better to not use it, but you're only 20 and people experiment with recreational drugs around this age, so if you're going to do it you will anyway. Not a good idea to use amphetamines and weed either, maybe at different ends of the day or something. I would think it would be really dangerous to use Xyrem if you're stoned, really bad idea. What else can I say, just take it easy and don't get to out of it.

#7 sleepaholic

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Posted 10 August 2008 - 03:27 PM

Well, I smoked for years...among doing other 'experimental' things when I was a little younger, 31 now. Quite heavily in college - almost daily for the most part. I wouldn't say that I was self-medicating to counteract other things, I was just having 'fun'. Now, this was way before I actually found out I had narcolepsy - If I knew I had it then I might have been a little more reserved, but....maybe not. I'm not one to let any ailment control my life, but you have to know your boundaries and limits. If it makes your N worse and you miss classes or start having other problems in school then don't risk it. You probably already struggle enough as it is just living with N, so why add to it.

My experiences: From what I recall when I smoked during the day it did have a sleepy impact on me but I just attributed that to the drug. When I came down I was extremely tired. If I smoked at night, especially before I went to bed, it would be almost impossible for me to wake up the next day before noon. (and I actually did miss classes, which isn't good) I think it drastically increased my symptoms, but at the time I had no idea I had narcolepsy so I blew it off as side effects of the drug. I quit smoking for a number of reasons...1) Got married 2) Got a job 3) Had kids 4) Pot quit having a 'good' affect on me and started making me feel weird, and not a good weird...maybe this was the N, or my body started responding differently to the chemicals. As far as smoking and mixing with other drugs...just listen to you body. Pot isn't a harmful drug in the grand scheme of things (definitely isn't good for memory), however, with you being N and taking meds, it might affect you more than you realize it. Im not that familiar with xyrem so have no advice on that, I take Provigil (sometimes). Like I said, just listen to your body. I know it is probably tough if everyone around you is doing it, but your true friends will understand and won't make you feel bad if you 'pass.'

On a side note: The first thing you must realize is that you are not a normal healthy person (if that exists). You are a person living with N. As much as it sucks, you will not be able to do everything that everyone does. That doesn't mean that you can't enjoy and live life to the fullest...you just have to understand what you can and can't do. I truly feel the quicker you learn this, the better your life will be. It took me years to learn this lesson and I did a lot of stupid things along the way. I was diagnosed with juvenille onset diabetes when I was 14...I basically prentended like I didn't have it for years. Small case of denial, I guess. I wish I had allowed myself to accept my condition a long time ago. Don't get me wrong, I live a great life, I just have to plan and think about things before I go places or do anything. All we can do is just learn to live with our conditions, whatever they are. Once we learn to live, we learn how to love living. <---My Hallmark quote of the day. Well, sorry for the rambling...maybe its my former drug abuse..lol



#8 greatbig47

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Posted 10 August 2008 - 10:31 PM

These are all good, honest words....

I'm so proud of this community!!!!
*a little teary eyed*

-Stu

#9 Henry G

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Posted 11 August 2008 - 04:39 AM

I guess everyone even N's are different.

If I smoke weed - my already pretty annoying and debilitating EDS will increase 3x more. Rending me completely useless for at least 1 week.

If I drink wine or beer - then I get debilitated for 24 hours (but not one whole week).

If I drink distilled spirits it's not as bad. A very small amount might even wake me up.

In short anything "downer" messes me up real bad, including milk (which I save to drink only near bed-time)

If I am very very hyper (maybe cos it's Summer and a heatwave) then I can drink milk and still feel OK. But beer will still send me to sleep straight away.

#10 Marcianna

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Posted 11 August 2008 - 02:33 PM

QUOTE (greatbig47 @ Aug 11 2008, 04:31 AM) <{POST_SNAPBACK}>
These are all good, honest words....

I'm so proud of this community!!!!
*a little teary eyed*

-Stu


Were a mess of freaking hippies!
lol... tongue.gif
AWESOME!