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Narcolepsy And Marijuana

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Which is why just grabbing a bad of weed and smoking it to "medicate" is not a smart plan. You're going to have so much variance in strains and smoking is probably about the least scientific and measurable way of consuming a chemical substance.

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Which is why just grabbing a bad of weed and smoking it to "medicate" is not a smart plan. You're going to have so much variance in strains and smoking is probably about the least scientific and measurable way of consuming a chemical substance.

That was my point earlier...you don't know what you're getting buying it on the street. I would prefer that it be legalized and CONTROLLED. Different strains have different strengths of CBD or THC...sort of explained here...

http://www.weedguru.com/marijuanavarieties.php

Sk8aplexy...interesting article...thanks for posting. Hard to believe that they have to resort to using rats to do these experiments. Surely there would be a line up out the door of humans more than willing to participate...LOL!

I also happened on this site when looking for a "pill" form because "pill" was mentioned on (of all things) a forum frequented by old farts living in Mexico looking to learn the ropes about the area.

http://medicalmarijuana.procon.org/

That is a VERY interesting site and I'm still wading through it...but here is the link directly to "pill" form...

http://medicalmarijuana.procon.org/view.resource.php?resourceID=000883

Happy reading!

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

Hi! I�m 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 you�re narcoleptic, and i�ve 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 doesn�t 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 i�ve 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

 

 

 

Okay so i highly suggest to get your Medical Marijuana Card as i do not think that smoking it if it is illegal where you live or in your state ect... 

However this is the info i have collected within the last few months, i will be building on it for people who are curious about getting their medical mj card, as well my doctor (Neurologist) Is interested in the research i do for this as it can be a beneficial alternative in many ways. 

 

 

Medical Marijuana:
"Medical cannabis (or medical marijuana) refers to the use of cannabis and its constituent cannabinoids, such as tetrahydrocannabinol (THC) and cannabidiol (CBD), as medical therapy to treat disease or alleviate symptoms."
"Medical cannabis can be administered using a variety of methods, including vaporizing or smoking dried buds, eating extracts, and taking capsules. Synthetic cannabinoids are available as prescription drugs in some countries; examples include: dronabinol (available in the United States (US) and Canada) and nabilone (available in Canada, Mexico, the United Kingdom (UK), and the US)."
Medical Uses:
"Medical cannabis has several potential beneficial effects. Cannabinoids can serve as appetite stimulants, antiemetics, antispasmodics, and have some analgesic effects, may be helpful treating chronic non-cancerous pain, and to treat cancer.
The Institute of Medicine, run by the United States National Academy of Sciences, conducted a comprehensive study in 1999 assessing the potential health benefits of cannabis and its constituent cannabinoids. The study concluded that smoking cannabis is not to be recommended for the treatment of any disease condition, but that nausea, appetite loss, pain and anxiety can all be mitigated by cannabis. While the study expressed reservations about smoked cannabis due to the health risks associated with smoking, the study team concluded that until another mode of ingestion was perfected providing the same relief as smoked cannabis, there was no alternative. "
"Pain
Cannabis appears to be somewhat effective in treatment of chronic pain, including pain caused by neuropathy and possibly also that due to fibromyalgia and rheumatoid arthritis."
"Methods of consumption
Smoking is the means of administration of cannabis for many consumers. It is difficult to predict the pharmacological response to cannabis because concentration of cannabinoids varies widely as there are different ways of preparing cannabis for consumption (smoked, applied as oils, eaten, or drank) and a lack of production controls. The potential for adverse effects from smoke inhalation makes smoking a less viable option than oral preparations.
Cannabis vaporizers have gained popularity because of the perception among users that less harmful chemicals are ingested when components are inhaled via aerosol rather than smoke.
Cannabinoid medicines are available in pill form (dronabinol and nabilone) and liquid extracts formulated into an oromucosal spray (nabiximols). Oral preparations are "problematic due to the uptake of cannabinoids into fatty tissue, from which they are released slowly, and the significant first-pass liver metabolism, which breaks down Δ9THC and contributes further to the variability of plasma concentrations"
 
 
 
 
"Marijuana affects dreams. Stoners say they don't have dreams but if they stop smoking for a few days, they are flooded with dreams. Is there any psychological research supporting this?
Sleep and wakefulness are both parts of a normal daily rhythm. This daily cycle is called a circadian rhythm. Both external and internal events can influence circadian rhythms. Morning light and alarm clocks trigger wakefulness. When isolated from normal time cues, the daily human cycle is about 24 hours, hence "circa dies."
"Sleep has been extensively studied in research laboratories, like the University of Chicago, by measuring brain waves and eye movements while research subjects sleep. Gentle electrodes are placed on volunteers' scalps and near their eyes. While sleeping, the electroencephalogram (EEG) provides evidence of brain activity.
Though sleep seems like a passive state to us, the brain is still very active. In fact, the EEG of a person falling asleep shows five stages of sleep: Stages 1 through 4 and a stage called rapid eye movement (REM) sleep. Each stage is progressively deeper and the complete cycle is repeated several times during the night. When awakened during REM sleep, subjects report dreaming. So if dreams take place during REM sleep, the question for us is: Does smoking marijuana interrupt REM sleep?
To address this question, Feinberg, et al. (1975) compared the sleep patterns of experienced marijuana users on tetrahydrocannabinol (THC) and a placebo. Feinberg, et al. (1975) reported reduced eye movement activity and less REM sleep in the THC condition. They also reported a REM rebound effect, that is more REM activity, on withdrawal from THC. So,there exists some scientific evidence that marijuana interferes with REM sleep.
If sleep is fascinating, dreaming is even more so. No one knows for sure the meaning or function of night-time dreams, but there is plenty of speculation. Freud believed dreams represented the royal road to the unconscious. They told us our secret desires and fears.
 
 
"I have just been diagnosed with Narcolepsy & Cataplexy, and i was wondering what strain of marijuana would be best for someone like me?"
"Answer: Cannabis can have a profound affect on your sleep cycle. Particularly THC, and right now there are things happening to treat Epilepsy and stuff right now. A lt of people who consume High THC cannabis report that it has a high effect on their dreams. For the most par people who consume large amounts of cannabis report having greatly diminished or no dreams. And it is not clear whether they are just not remembering their dreams, or are just not having dreams at all. But there is a big effect of consuming a large amounts of cannabis before bed has on your sleep cycle. So for someone who has got something like Narcolepsy or Cataplexy that is a serious sleep condition, messing with that in some way is likely going to have some affect on the condition whether negative or positive. And most of the drugs that a pharmacutical company would recommend for treating those conditions, they don't really understand how they work, you know they are just tweaking the sleep cycle and are seeing if that has the desired effect. Given that cannabis is so much safer than the other options out there, I think it makes a lot of sense to persue that. In terms of how best to persue it, typically for someone during the day will either vapourize it, or smoke it. But at nighttime you want a much longer effect, you want it to last for a much longer time so an eddible, makes a lot of sense. Whether its pill form, or a food product or something that is going to stay in your system a lot longer. It may take a lot longer to kick in but it stays in your system. "
 
 
Jucing can be the best and most beneficial way to consume Medical Marijuana... 
 
 
 
Lastly here is info on what they say is a good strain for Narcolepsy.

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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.

Hank, you are exactly why I don't make it known that I smoke marijuana in the comfort of my home to ease my Cataplexy.  I do not smoke enough to get a real high, but 2 - 3 hits is enough to make me "snap out of it", maybe 4 time a day.  For comparison purposes, this is roughly equivalent to smoking 2 cigarettes a day.  And I'm not getting all those nasty chemicals.  Yes, smoke of any kind is dangerous to inhale.  But I get no other negative side effects.  It also increases my appetite.  I am a small girl to begin with, and I keep losing weight and I am starting to look sick from it.  Yes, exercise would help.  But being Narcoleptic with Cataplexy and not having any proper medication yet, I simply do not have the energy.  I am honest with my prescribing doctor, and she told me she can not tell me it's okay to do it for legal reasons, but it is not going to hurt me.  I am in the process of obtaining Xyrem, and maybe I won't need marijuana at all once I am on it.  That is totally fine by me.  I truly use it to ease my symptoms, rather than have a good time.

 

On a side note, I live in New York and our Governor just signed a Medical Marijuana Law.  And they are not the first state.  There are medicinal qualities with marijuana.

 

And I don't live in my parents' basement.  My fiance and I just bought a house in May, I moved out of my parents' house when I was 21, and I have never lived in a basement ever.

 

Just because something works for you, doesn't mean it works for others.

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@Carrie...those were great links

@Nikcoal...that last link by Carrie was very interesting...many "smokers" are now vaping and marijuana is no different in that department...same effect apparently but no stinkies and easier on the lungs.

BTW, you'd have to read a lot of Hank's posts to know that your response (a year later) is off base.

He is well aware that everyone is different and that "whatever it takes" is de rigueur.

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An alternative to smoking MJ is to have your physician prescribe dronabinol, which is basically the pill form of THC -- MJ without the high.  Unlike MJ, it's simply a medication, regulated by the FDA, and the doses are standardized, so you know what you're getting.  It's used to boost appetite but it could treat the cataplexy as well.  (You may have already tried it?)  It's not identical to MJ so it might not work for you, but if it does, you're better off using it.  Not only is it safer and will impair your cognition less, it also means you can still get a job that does drug tests, since you can prove you're simply taking a medication rather than trying to disprove the assumption that you're using MJ recreationally.

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The pill is definitely worth trying.

I'm sure you'll know immediately if it's performing the same way for you. I can tell you, from personal experience, that nicotine (which also suppresses cataplexy) does NOT work (for me) when administered as a patch or as gum. That's why I still vape nicotine. There is something about the delivery system of inhalation which is instantaneous in the brain. Back of the throat hit... or think of nasal spray of pure orexin...think of both those locations and what is directly on the other side of them in the brain.

For me, withdrawing from nicotine cold turkey sends me into rebound cataplexy within 36 hours.

And, honestly, what Nikcoal described sounded very much like rebound cataplexy to me. I have vibrated like a cheap motel bed but unable to move or fall to safety...actually my daughter-in-law and granddaughter sandwiched me (standing up and teetering on the edge of a step) and held on until it was over.

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Ferret - I responded to that post because it struck a nerve with me.  If Hank no longer feels that way about marijuana users, that's fine.  I was upset that he made a generalization about all who self medicate.  Is it true for some?  Why yes it is, and I have friends and family who either are in that loop now, or are recovering.  That is why I am so careful to not become a stereotype.  I smoke to ease my symptoms, not to get high and be goofy.  If I wanted to really "feel" it, I would either be smoking more than the paltry amount I do, or I would drink alcohol.  I also would much rather use a vaporizer or an oil rather than the method I use now.  I am actually pretty educated on the plant/chemcial and its effects, as well as various forms of it.  I just didn't feel it necessary to give out all that information in my first post. I will share my knowledge with anyone who is willing to listen, and I in turn would allow them to teach me something I did not know.  I am very passionate about learning and I have found myself doing more and more research on all sorts of topics now that I am home more often due to my Narcolepsy.  As for your question in my other thread, no I have not quit smoking and I do not plan to until a medication works for me.  I am getting Xyrem in the mail tomorrow and am very excited to try it.  If it works, I will have no use for smoking and therefore will stop.  If Xyrem does not work, I'll just have to wait roughly 18 months for New York State to establish a program and see if I qualify for some sort of pill or oil.  Since I love to research, I have already begun and I just might qualify under their approved medical conditions.

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I actually do still hold the same opinion that I did a year ago when I made that reply to a different person.

 

Is it only fine with you if I change that opinion or can it also be fine with you that I hold an opinion with which you do not agree.

 

I tend to say what I mean and mean what I say. I also tend not to generalize. So, if I intended to make a generalization in the post that concerns you, I would have been much more brief- and included words like all, always and never.

 

Hopefully, we can get past our differing opinions on self medication. I am not bothered that you disagree with me.

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Hank - My understanding from Ferret's post seemed to be coming to your defense and maybe you no longer felt that way as a year ago.  That is why I worded it in the manner I did.  I firmly believe everyone is entitled to their opinion, and I know I will not agree with everyone's nor will all people with mine.  So it is fine either way.

 

Saying what you mean and meaning what you say is admirable as many people do not back up their opinions.  So you do get points because I try to be the same way, and am more than happy to explain something I may have not worded well.  Your comment bothered me because, although you are certainly correct in your description of some who self-medicate, I feel I do not fit that at all and I guess I meant to show you that and maybe it wasn't the best way.  I don't want any enemies here.  I tend to be very short and blunt when I am irritated, as I was by your post.  If I had just given myself time to calm down, I would have probably had much less "attitude" in my reply and simply more facts/characteristics of myself.

 

I do see your side of the self-medication argument, and do agree to an extent.  I have a good friend who really should talk to a doctor or two, but he would rather drink in excess on a regular basis.  I was honest with my doctor that I smoke very little, and she did not condone my behavior but she told me it won't hurt me and for my own purposes, I probably will no longer need it once I am adjusted to Xyrem.

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I must be strange but the experiences I've had with trying Marijuana over the years has been horrendous. Now that I know that I have Narcolepsy, it all makes sense now.

 

The first time I smoked, I immediately collapsed to the ground and was still able to hear everyone freaking out because I hit my head on the cement, but I was unable to see. My body was completely limp and I couldn't move it.

 

The second time I couldn't speak, I couldn't move, I started to hear ringing and noticed that I was again about to loose consciousness. I fell over on the couch and managed to have my eyes open at least. Again with friends surrounding me trying to figure out what was happening and me being unable to respond. 

 

The third and final time, I was talking to someone as I smoked and suddenly dropped out of the conversation. I laid back and was again unable to move or speak and could not break my eyes away from the ceiling. While stuck staring, I started to see dots forming various geometric shapes with various color patterns changing in the dots.

 

Marijuana immediately triggers Cataplexy for me. I'm very sure that what I ingested was definitely just Marijuana. I was the only one in these cases that had that reaction. 

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I must be strange but the experiences I've had with trying Marijuana over the years has been horrendous. Now that I know that I have Narcolepsy, it all makes sense now.

 

The first time I smoked, I immediately collapsed to the ground and was still able to hear everyone freaking out because I hit my head on the cement, but I was unable to see. My body was completely limp and I couldn't move it.

 

The second time I couldn't speak, I couldn't move, I started to hear ringing and noticed that I was again about to loose consciousness. I fell over on the couch and managed to have my eyes open at least. Again with friends surrounding me trying to figure out what was happening and me being unable to respond. 

 

The third and final time, I was talking to someone as I smoked and suddenly dropped out of the conversation. I laid back and was again unable to move or speak and could not break my eyes away from the ceiling. While stuck staring, I started to see dots forming various geometric shapes with various color patterns changing in the dots.

 

Marijuana immediately triggers Cataplexy for me. I'm very sure that what I ingested was definitely just Marijuana. I was the only one in these cases that had that reaction. 

I'm sorry you had such a bad experience.  I have never experienced nor seen this sort of reaction, but it makes sense in a way.

 

Everyone's brain/body chemistry is different, and therefore not all substances will react with all people the same, even if the majority react a certain way.

 

My psychiatrist prescribed me Adderall when I told her I couldn't focus on my Organic Chemistry reading.  I tried it 3 times, with absolutely no effect each time.  Turns out, my "cloudy mind" was a side effect from my Seroquel that I had just started taking shortly into the semester.  Adderall helps most people in some manner, but it did absolutely nothing for me and I generally have a good response to medications.

 

So just like marijuana immediately eases my Cataplexy, it immediately triggers yours.

 

Do you take anything for your Cataplexy now?  I am getting my first shipment of Xyrem tomorrow, and I am very hopeful it will help me within a few weeks.

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Wouldn't it be fascinating to hook SillyBrain and Nikcoal up for the purposes of an experiment? Sort of like an MSLT but they'd be smoking grass instead. Man, would I LOVE to see those EEG's after each one toked the same batch of mj.

BTW, I tried weed once when I was 32...sort of like getting hit with a sledgehammer. No joy.

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I am useless with alcohol or drugs. Not to say that I didn't give them the old college try. I am more like a Wildebeest with a blow dart to the neck than a party animal.

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As far as varying experiences with weed, it helps to know what you are smoking.There are 2 main kinds, indica and sativa, and a million varieties of each. I have some unpleasant reactions to indicas but not sativas. I'm also the type of person that had a lot of sensitivity with just about everything... foods, medication, environmental allergies, the sun.

Not that I use anything now. Off meds waiting for sleep study. Just past the suicidal part of effexor withdrawal.

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I take Xyrem now, which has helped to bring about a lot of positive changes.

 

My Cataplexy is rather mild and has never resulted in a full collapse, outside of smoking marijuana.

 

 

I am useless with alcohol or drugs. Not to say that I didn't give them the old college try. I am more like a Wildebeest with a blow dart to the neck than a party animal.

 

This is how I would describe myself as well.

 

 

Wouldn't it be fascinating to hook SillyBrain and Nikcoal up for the purposes of an experiment? Sort of like an MSLT but they'd be smoking grass instead. Man, would I LOVE to see those EEG's after each one toked the same batch of mj.
BTW, I tried weed once when I was 32...sort of like getting hit with a sledgehammer. No joy.

 

 

If it were a possibility, I would do this for Science and for a lot of money. The completely opposite results would be interesting to see.

 

 

As far as varying experiences with weed, it helps to know what you are smoking.There are 2 main kinds, indica and sativa, and a million varieties of each.

 

 

I don't know what the first one was, but the 2nd was Indica and the 3rd was Sativa. I have no way of knowing the difference but that's what I was told that they were.

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I also agree that mj affects everyone differently and is most definitely not for everyone. My guess is that if you are already "neurologically interesting" it's hard to predict the effect of any particular intoxicant. I have heard anecdotally that women are more likely to experience paranoia than men with use. I was just surprised to have personally experienced such different effects from what I considered to be one product. I would have never known it was due to difference in variety if I hadn't been told.

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Quote above...I don't have this all figured out yet

I am learning so much here. I'm back to thinking I do have narcolepsy. I thought narcoleptics didn't get enough REM but no matter when I wake up I feel like I had been dreaming. I remember lots of dreams and from years ago.

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Wouldn't it be fascinating to hook SillyBrain and Nikcoal up for the purposes of an experiment? Sort of like an MSLT but they'd be smoking grass instead. Man, would I LOVE to see those EEG's after each one toked the same batch of mj.

BTW, I tried weed once when I was 32...sort of like getting hit with a sledgehammer. No joy.

 

I actually would love to do this.  I am very interested in how the brain works and particularly interested in knowing exactly how mine operates both sober and after smoking.

 

As far as varying experiences with weed, it helps to know what you are smoking.There are 2 main kinds, indica and sativa, and a million varieties of each. I have some unpleasant reactions to indicas but not sativas. I'm also the type of person that had a lot of sensitivity with just about everything... foods, medication, environmental allergies, the sun.

Not that I use anything now. Off meds waiting for sleep study. Just past the suicidal part of effexor withdrawal.

 

I was unaware there were 2 main species, but I did know there were endless varieties.

 

Hang in there with your withdrawal.  I had to go off my Cymbalta completely for 10 days before my sleep study.  I just about hit rock bottom, and my mother insisted I cancel the study and go back on my medication because to her it wasn't worth it.  I told her I would not do that because I only had a few more days to go, and I saw the silver lining that in just a few days, I could start taking it again.  She told me I was "non-compliant with my medications" and if she called the cops, they could take me away.  Keep in mind, I am a 27 year old adult at this point, was advised by a medical professional to temporarily cease my medication, and do not live with them.  I was merely stopping in to talk (as I used to do several times a week because we lived just a few miles apart).  If I didn't fight through the withdrawal, I would not have gotten the study done, I would still be undiagnosed, and I would not be getting my Xyrem to start treatment today.  It DOES get better! 

 

I also agree that mj affects everyone differently and is most definitely not for everyone. My guess is that if you are already "neurologically interesting" it's hard to predict the effect of any particular intoxicant. I have heard anecdotally that women are more likely to experience paranoia than men with use. I was just surprised to have personally experienced such different effects from what I considered to be one product. I would have never known it was due to difference in variety if I hadn't been told.

 

I have found out recently that there are some strains that affect me much better than others.  I have found anything with a "fruity" name has almost no effect.

 

Quote above...I don't have this all figured out yet

I am learning so much here. I'm back to thinking I do have narcolepsy. I thought narcoleptics didn't get enough REM but no matter when I wake up I feel like I had been dreaming. I remember lots of dreams and from years ago.

 

I am still learning a lot on Narcolepsy and Cataplexy, but it is too much REM sleep.  I have had very vivid and even lucid dreams for as long as I can remember.  An individual with Narcolepsy will enter REM sleep drastically faster than someone without.  For example, most adults should enter REM sleep about 60 - 90 minutes into the sleep cycle.  After my study, I was entering REM sleep in 4 minutes.

 

I don't know much more than this, I am still grasping it all myself.  I do hope that helps!

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You have that correct...sweet sweet slow wave sleep...wherefore art thou?

There are some very good websites that go into great detail about the stages of sleep, what each of them does and in what order they are supposed to follow each other. We, as N's or N's with C, have really messed up stages and order...but I would imagine that our patterns are each unique individually except for the REM showing up way too soon in the cycle. 

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Interestingly enough, it was when I stopped smoking weed after doing so for nearly 15 years that I began to become more and more fatigued. Like in the anecdote posted earlier in this thread from wikipedia, I immediately began having vivid dreams all through the night. I know others who have said the same but that after a few nights their dreams tapered off. However, its now approaching 2 years since I discontinued marijuana and I still have dreams throughout the night and remember them in detail when I wake.

 

I was diagnosed with N after a lengthy battle with my insurance company to pay for the MSLT this past April. At the time I mentioned to my doctor that the fatigue and sleep attacks began shortly after stopping the usage of marijuana and he said that wasn't surprising. He told me that he has heard from others in the field that marijuana is believed to be an REM sleep suppressant, but unfortunately due to its scheduling there just hasn't been any reliable studies to confirm this and as such cannot recommend it to treat N. 

 

All I know is that if it weren't for my job (and the backwards drug policies of my current state) I would certainly be smoking a little before bed each night - at the very least to see for myself how it affects my N.

 

Anyway, just my two cents, if you feel comfortable enough with the drug and your state laws won't send you to jail for a little bit of grass, it may be worth a shot to see if it helps. If it doesn't, well then its back to all the other schedule II drugs you're probably prescribed to treat your N.

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Sort of related...one of my stepsons has chronic back issues and has been through just about every pain medication that exists. He has a prescription for medical marijuana and vapes it like an e-cigarette...no smell, no smoke and it works. He has even used it in open public places and nobody knew the difference. It may be worth looking into the option...my stepson is located in Toronto, Ontario. For him, it has been a godsend

Seek and ye shall find. Best of luck to all of you.

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http://us.cnn.com/2014/07/28/health/federal-marijuana-bill/index.html?hpt=hp_bn13

 

http://us.cnn.com/2014/03/05/health/gupta-medical-marijuana/index.html?iid=article_sidebar

 

 

Please read the above links. They fall under the "whatever works" category...it has NOTHING to do with getting high since there is less than 0.3% THC in many medical marijuana strains. Open your minds...trust me, your brains will not fall out.

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