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Narcolepsy And Marijuana


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#1 orange

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Posted 09 August 2008 - 10:26 PM

i posted this in the 'day by day' forum earlier. thought i'd try posting here too:



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 Spiff

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Posted 19 August 2008 - 05:48 PM

There is a slight aversion to posting about potentially illegal activities on this forum, but I will attempt to help if I can.

I am a recent grad who spent a good bit of high school and some of college using marijuana with varying degrees of consistency. It so happens that I was using fairly consistently when I was finally diagnosed and was concerned. I tried something that you should as well...I just asked my doctor straight out. He said it probably wasn't that good of an idea, but that it doesn't make much sense to discount one drug when he's pumping me full of another. I, being a complete nerd, decided to do some tests.

***NOTICE: THIS IS SUBJECTIVE INFORMATION FROM ONE INDIVIDUAL WHOM MAY OR MAY NOT HAVE BRAIN CHEMISTRY SIMILAR TO YOURS.** This is simply the account of MY reaction...

The reason that I did not want to quit was because I had been using MJ to help me sleep through the night. As many with narcolepsy can attest, getting quality sleep through the night can be difficult. I have found (even though I do not do it anymore due to work concerns and such) that smoking a very small amount (for the smoker...this is 2 to 3 hits...not a blunt or something equally ridiculous) helps me sleep better through the night and manage my narcolepsy better during the day. I want to make it very clear that just as there are differences between a glass of red wine and a bottle, there are differences between a few hits and getting baked out of ones mind.

You should know that I take Provigil in the morning ONLY and have no idea what type of effects mixing with Xyrem would be.

I hope this helps...remember...ask your doctor and, if you decide to experiment, be careful and keep track in writing of the effects different behaviors have on you.

-Spiff

#3 greatbig47

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Posted 19 August 2008 - 07:45 PM

QUOTE (Spiff @ Aug 19 2008, 06:48 PM) <{POST_SNAPBACK}>
I hope this helps...remember...ask your doctor and, if you decide to experiment, be careful and keep track in writing of the effects different behaviors have on you.

-Spiff


Bravo!!!! Thank you for your excellent post, Spiff! I could not agree with you more! If I had a POTD (Post of the day) award, you would have won it!

The ignorance that surrounds the use of MJ is assounding, and there is DEFINTELY a difference between a glass and a bottle.

Hope to see you around her more.

-Stu

#4 sweetsurrender

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Posted 25 March 2012 - 09:48 AM

My latest experience with MJ made me never want to smoke again. Ever. I think I may change my mind, it's a lot easier to handle now that I know what was going on.

This was before I was diagnosed and actually got the ball rolling, so it's not all that bad I guess. I knew nothing about narcolepsy. I was smoking with my brother and a friend in my apartment and especially when I'm with my brother things get really hilarious. We are both gigglers and we feed off of each other. (Can you see where this is going?). This was my first (noticeable) experience of cataplexy and it went on for a very long time. I think it was at least 10 minutes. 5 of them I could not move at all or talk. I felt like my arms were moving uncontrollably but they were not. I went to the emergency room and they just told me I was high.

Now that I have a diagnosis and am on anti-depressants to control the cataplexy I think I know the perfect way to test it to see if it works. But that's still too scary to think about right now.

#5 Intreble

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Posted 02 August 2013 - 12:45 PM

I am exited to see this topic discussed here. I was a pretty heavy user throughout my 20s and noticed that the panic attacks I had in my early 20s basically disappeared by my late 20s. I was 31 when I lost my job (just as I was getting diagnosed with narcolepsy) and have not been able to buy cannabis since then. I'm 33 now. Occasionally my friend (who I bought from loyally for quite a while) comes over and smokes me out. Those visits are often the difference between eating nothing all day or actually eating meals. 

 

I was always a small-framed person and in my teens I could eat anything and not gain weight. I also had a lot of issues with stomach acid and started nearly every day by throwing up some amount of yellow bile. Sometimes people asked if I had an eating disorder and I would say "The only time I actually throw up food is when I'm sick!"  I first smoked at age 24 and discovered how incredible food tasted when you're high. By age 25 I had gained about 10lbs and even noticed this comment from my doctor (much later when I requested records I stumbled upon the comment) "Patient has gained weight and is looking very healthy." I stuck to that weight (about 125lb, 5'2") until I started taking stimulants in my early 30s. Then I saw the lbs melt away. I weighed 104 two days ago. I can't explain the way it feels to know that you are hungry and know that you need to eat, but at the same time that is the last thing you want to do. Nothing sounds good. My mom suggested Ensure drinks, and that's what I have the most when I don't have cannabis. I've told my mom and my therapist that weed is the only thing that makes me want to eat again. But I still keep hearing the same *BEEP* back from them-it's bad! No you guys, it really isn't bad. It's great. <sigh>

Leslie



#6 Hank

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Posted 02 August 2013 - 01:16 PM

I am not a fan of self medication - especially when the "medication" is something you enjoy. It would be like saying Budweiser helps me keep my weight up. It seems waaay too easy to find health benefits in recreational drug use.

I am curious- you did not mention anything about exercise. That sure helps me with appetite.

I am not currently on stimulants, which certainly did put a monkey wrench into my appetite. Weight loss was a significant part of why I discontinued Xyrem. But just stimulants- a day off from those and exercise kept my appetite and weight within normal limits.

The snag I see is when recreational or regular drug use becomes justified by perceived benefits.

If you have medical issues, seek out legitimate medical care to address those.

Narcolepsy does not make for an easy life- but a good life is still attainable. Narcolepsy and recreational drug/ self medication sounds like a recipe for living in your parents basement, so to speak. I am not saying that is your case- and some people are content with that.

#7 DeathRabbit

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Posted 05 August 2013 - 09:46 AM

Well there is some data that shows that THC has positive effects on sleep architecture. However, you can't really consistently medicate by smoking. Of course you're in Kansas, so medicinal MJ isn't an option. You could drive to Colorado I suppose. The states that have medicinal MJ make sublingual drops, so you can somewhat scientifically administer the THC. From what I've read, you don't want to take any more than what will equate to a slight buzz. Actually getting high will lock you into alpha wave sleep, just like going to sleep drunk. Just remember, there legitimate medical purposes for ethanol as well, but you're never going to see a doctor writing a prescription for a bottle of Jack. If you are going to do this, try to be as measured as you can be.

 

EDIT: As far as the eating goes, most depressants will cause polyphagia. Maybe try some strong wine with a meal. The reason most people don't associate the munchies with alcohol is light beer tends to fill you up first with all the carbonation and just sheer quantity you end up consuming and hard liquor tends to irritate the stomach lining.



#8 SteffaneGrace

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Posted 05 August 2013 - 11:38 AM

In response to Hank-->

 

I find it odd that you state if one gets enjoyment out of a drug, that it loses its credibility. I am prescribed Valium and enjoy its effects greatly. But I do not abuse it and it helps me a great amount. Xyrem is another. Laying in bed after having taken Xyrem, the "high" that comes off of it feels great. It feels wonderful to allow my mind to float off and for my body to melt into the sheets. These "highs" are wonderful, but are also highly beneficial.

 

I used to smoke MJ about once a week, now it is only about once a month. Since changing to Xyrem, I steer clear of alcohol and MJ. I am an overly cautious person. 

 

I feel quite sad that you compare MJ to alcohol. There is a strong difference between enjoying a high from alcohol and actually being addicted. I watched someone who was addicted go all the way to death. It was a year of living with that person. It was my ex's father. HE was addicted. He couldn't stop because his body needed it. He went to AA meetings and all of that stuff. His liver failed. His last few hours of life were filled with excrement and blood. Which covered the walls. And my ex found him dead on the floor that evening. 

 

If people need a high, I accept that--we are only human. And I am thankful when it is MJ and not alcohol. I have seen the adverse effects of alcohol from many people. Actually I have another close friend who is actively drinking himself to death. But what can you do? It is an actual addiction.

 

And for a final thought. They don't prescribe alcohol for chemo patients and glaucoma. In fact. Alcohol isn't prescribed for anything medical. Well...unless you consider the Civil War and using it as an anesthesia to stave off the pain from an amputation ;b



#9 DeathRabbit

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Posted 05 August 2013 - 12:56 PM

All depressants should be used in moderation IMHO, but it is true that alcohol is more likely to outright kill you. But I have seen pot smokers smoke their life away too. But I've also seen some that lead productive lives. I've also seen some moderate drinkers lead productive lives as well. It's not substances that harm people; it's substance abuse.



#10 Hank

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Posted 05 August 2013 - 01:30 PM

In response to Hank-->

I find it odd that you state if one gets enjoyment out of a drug, that it loses its credibility. I am prescribed Valium and enjoy its effects greatly. But I do not abuse it and it helps me a great amount. Xyrem is another. Laying in bed after having taken Xyrem, the "high" that comes off of it feels great. It feels wonderful to allow my mind to float off and for my body to melt into the sheets. These "highs" are wonderful, but are also highly beneficial.

I used to smoke MJ about once a week, now it is only about once a month. Since changing to Xyrem, I steer clear of alcohol and MJ. I am an overly cautious person.

I feel quite sad that you compare MJ to alcohol. There is a strong difference between enjoying a high from alcohol and actually being addicted. I watched someone who was addicted go all the way to death. It was a year of living with that person. It was my ex's father. HE was addicted. He couldn't stop because his body needed it. He went to AA meetings and all of that stuff. His liver failed. His last few hours of life were filled with excrement and blood. Which covered the walls. And my ex found him dead on the floor that evening.

If people need a high, I accept that--we are only human. And I am thankful when it is MJ and not alcohol. I have seen the adverse effects of alcohol from many people. Actually I have another close friend who is actively drinking himself to death. But what can you do? It is an actual addiction.

And for a final thought. They don't prescribe alcohol for chemo patients and glaucoma. In fact. Alcohol isn't prescribed for anything medical. Well...unless you consider the Civil War and using it as an anesthesia to stave off the pain from an amputation ;b

I find it odd that you are disagreeing with me on points I did not make:

"I find it odd that you state if one gets enjoyment out of a drug, that it loses its credibility"- that is your inaccurate paraphrase and different from the point I made.

"I feel quite sad that you compare MJ to alcohol. There is a strong difference between enjoying a high from alcohol and actually being addicted."- my comments were not to make a comparison between marijuana and alcohol. My point was about the justification for self medication.

If had I made these points, I would share your disagreement and correct my statements.

If you would like to have a discussion about what I actually stated, I would welcome that. I enjoy a lively debate and I am open to contrary opinions.

So sorry for your experience with watching someone with alcoholism. I am not a fan of addiction in any of its forms. I have also watched someone with undiagnosed depression (most likely) waste his life with an enabling family that let him live in their basement and get high. That is a life "wasted".

Alcoholism involves both a psychological addiction and (sometimes) a physical dependance. Marijuana lacks the physical dependance but can certainly have a psychological addiction. A person can be psychologically addicted to any number of things- like gambling for example. The point I was making is about the unhealthy emotional justification for "self medicating".

I am pleased for you that you get some sort of pleasure from Xyrem. Being awake on X was not a pleasurable experience for me at all and one of the reasons I discontinued. However, you are not prescribed X in order to achieve that pleasure. If (hypothetically) you were also taking an afternoon dose of X in order to feel that pleasurable experience, you would be heading for trouble. That is the point I was making.

#11 sk8aplexy

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Posted 05 August 2013 - 03:52 PM

This is a touchy topic.  My comments below aren't specifically in relation to it.

 

Many things, most in fact, come down to a balance along with proper proportion/s.

I was told by multiple doctors that if I find that something is helping me, than to continue it. 

I'm not referring though, to any one specific thing, nor this specific topics, topic.

 

I keep falling back on the quote, here below.

Why?  Because, I feel that so much today falls into the last category, or perhaps the last two categories; there's a lot which we think that we know and in fact don't.

The quote is great, yet is from someone I'm not very fond of:

 

"There are known knowns; there are things we know that we know.
There are known unknowns; that is to say, there are things that we now know we don't know.
But there are also unknown unknowns ‚Äď there are things we do not know we don't know."



#12 DeathRabbit

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Posted 05 August 2013 - 04:19 PM

The Unknown Knows:

 

Sorry couldnt help myself.



#13 SteffaneGrace

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Posted 05 August 2013 - 05:40 PM

I digress.

 

Orange. Be safe with whatever you do. I am a moderation type of person.

 

We are all here for each other. We have N and we all deal with it differently. I would suggest that you allow time for when the high ends plus an hour or so before taking Xyrem (only my suggestion, obviously I am not a doctor). Make sure you read the Xyrem packaging front to back. It actually is extremely informative. Depressants slow your breathing, Xyrem does the same. Doubling up on this side effect is not healthy by any means. I would not suggest using anything with Xyrem--that includes drinking, smoking weed or even taking prescription depressants like benzos. Always be careful. I have been on Xyrem for about a month and used correctly--it works very well for a lot of people. But it is far from a mild drug. It is a serious drug and as such should be taken seriously.

 

If you have further concerns, Orange. Please feel free to keep posting. Like I said, we are all here for each other. 

 

And although I had my unnecessary debate post--I will refrain from doing so in the future. That was not appropriate. 

 

Keep safe, O!



#14 DeathRabbit

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Posted 08 August 2013 - 04:46 PM

Not to stir the pot but then this happened: http://www.cnn.com/2...uana/index.html



#15 andlostillgiven

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Posted 08 August 2013 - 07:44 PM

I do not frequently use marijuana, but my SO takes it nightly for chronic insomnia. She aalso suffers from an anxiety disorder. It is the only thing that had helped her and works both flawlessly and consistently. Her psychologist supports her use (we are in Canada though) and when she stopped because she became pregnant her midwife suggested that continuing her use held less risk than dealing with the insomnia and low weight related to extreme morning sickness she was experiencing. Someday soon I hope it will get the evaluation and availability other more harmful prescription drugs have enjoyed an. Move past all the stigma.

another note, I do not use it because I experience vivid hallucinations, something none of my many seasoned pot smoking friends can relate to or explain. I now believe it to be related to poor sleep regulation and akin to hypnogogic hallucinations, something I am very familiar with that feels exactly the same. Naturally, I just don't mess around with it, as it has never offered me any really positive benefits aside from the obvious.

#16 Ferret

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Posted 08 August 2013 - 10:39 PM

Not to stir the pot but then this happened: http://www.cnn.com/2...uana/index.html

 

Thanks for posting the link. Kudos to Dr. Gupta for the turnaround too.

Now, why do you think that, as a pain reliever and medical helper, it received such bad press? Could it be that it's a plant and can't be patented by Big Pharma?

It is high (no pun intended) time for legal regulation of Marijuana. If it was regulated then it would be "clean"...no unexpected extra added special ingredients like PCP.

I don't smoke it but don't object to anyone who does. Whatever works for you...and I'll be passing on the info about the easing of the pain of Neuropathy to a few friends.



#17 DeathRabbit

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Posted 09 August 2013 - 09:31 AM

Nah, the bad press MJ gets these days is mainly because people associate it with hippie culture. Big pharma synthesizes medicines based on natural sources all the time. In fact, if medical MJ ever gets legalized at the federal level, I bet it wont take 5 minutes before one of them has an MJ derivative to sell you. The original smear campaign against it was run by Harry Anslinger as part of a bid to expand the role of his Federal Bureau of Narcotics. He also colluded with some big corporations IIRC because they felt threatened by industrial hemp and so they thought if they could convince the populace that MJ was a dangerous drug that turned its users into deranged psychopaths, then they could ban industrial hemp as well.



#18 Ferret

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Posted 09 August 2013 - 11:06 AM

As a former flower child, I resent that implication ;). BTW, every time I went into Sayulita, located on the west coast of Mexico in the state of Nayarit, I felt like I had walked into a time warp...lots  of hippies and they are YOUNG. Or you could go to Saltspring Island off the coast of Vancouver Island where my stepson and his wife live. Today's hippies are protective of the environment and promote green living. 

Banned hemp to protect the cotton industry. Dumb! Bring it back! Clothing, rope etc....an easily grown renewable resource that would provide jobs. Just don't let Monsanto get their hands on it.



#19 DeathRabbit

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Posted 09 August 2013 - 02:49 PM

I really do think the main reason Marijuana (and Hemp is guilty by association) is still so widely maligned is a culture war thing. If you guys back in the 60s had decided you were gonna smoke Skittles to broaden your perception and what all, Skittles would probably be schedule 1 now. Oh and I just saw this actually:



#20 Ferret

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Posted 09 August 2013 - 09:49 PM

Skittles were invented in 1974 and not imported to the States until 1979....they may yet make schedule 1 or be taken off the market like pseudoephedrine if people don't stop abusing them.

http://newsbusters.o...t-and-trayvon-m

Give me a mellow pothead any day.

The U.S. government has a patent on MJ? Will wonders never cease.