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Narcolepsy And Marijuana


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#41 SillyBrain

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Posted 17 July 2014 - 08:17 AM

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.



#42 scarletfire

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Posted 17 July 2014 - 08:50 AM

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.

#43 scarletfire

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Posted 17 July 2014 - 08:52 AM

JMac, we need less REM. As narcoleptics, we get way too much, hence the HH, SP, vivid dreams, and lack of SWS.



#44 scarletfire

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Posted 17 July 2014 - 08:54 AM


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.

#45 Nikcoal

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Posted 17 July 2014 - 11:54 AM

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!



#46 scarletfire

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Posted 17 July 2014 - 01:28 PM

I knew Rem came on fast with narcolepsy but I didn't understand what happens after that. obviously not sws...

#47 Ferret

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Posted 17 July 2014 - 01:42 PM

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. 



#48 ThorBearPig

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Posted 28 July 2014 - 08:27 PM

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.



#49 Ferret

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Posted 28 July 2014 - 11:17 PM

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.

#50 Ferret

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Posted Yesterday, 09:32 AM

http://us.cnn.com/20...tml?hpt=hp_bn13

 

http://us.cnn.com/20...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.



#51 Hank

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Posted Yesterday, 10:36 AM

One of my concern with promoting MJ use for the treatment is the chain of events that follows.

 

- if you have a responsible occupation, MJ use can ruin your career.

- if your employer has any suspicion of drug use, you may be randomly drug tested

- N and C symptoms can mimic intoxication. If you are then piss tested and it shows positive, you will be unable to defend yourself.

- if you are ever in a divorce/custody dispute, your substance use history will be wide open for scrutiny. The courts frown on drug use and it can damage your case.

- if you discuss your MJ use with your physician, that becomes part of your medical records. If those are ever subpoenaed for a court case, it will undermine your credibility.

- if you ever need to pursue a disability claim, child custody or medical malpractice, your medical records will be scrutinized for "contributing factors" that can be used to deny your claim.

 

So, if anyone is considering self medication with MJ, you might want to consider how this decision may impact you in future circumstances.



#52 Ferret

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Posted Yesterday, 10:53 AM

I am in total agreement with your thought process Hank. However, I am not advocating "self medication"...I am advocating "Medical Prescription MJ" with the prescription from a Medical Doctor. That is what my stepson has and the Doctor has all of his history and scans to back up that decision.

PRESCRIPTION mj is KNOWING what is in the mj and a specific strain to help with the problem.

 

Just out of curiosity...what about drug testing on those Narcoleptics who are taking amphetamines as stimulants...doesn't all of your list apply to those people too?????



#53 Hank

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Posted Yesterday, 12:04 PM

Amphetamines would certainly show up on a urine test. I know someone who tested false positive for Heroine because he ate a lemon-poppy seed muffin before a random drug test. So, you have to be careful.

 

MJ use is still a federal crime, even though it has been de-criminalized in some states. So, you need to be very careful before making this decision.

 

MJ is not a main stream treatment for N or C. I have not heard of any sleep medicine specialist who has prescribed it for treatment, although that may have occurred.

 

Since I am currently going through some of the life events I mentioned above, I am thankful that I can honestly answer "no" to any questions regarding drug or alcohol use. I have had maybe 1 drink a year for the past 8 years because it makes me feel like &^%$. So, it makes my answers very simple and uncomplicated. I would not want to be getting into the medical marijuana debate with  someone who was scrutinizing my life decisions.

 

People will make their own decisions about their treatment. I am tossing this out because it is far too easy to make decisions with little to no awareness of the consequences. Just food for thought.



#54 rayraybaybay

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Posted Yesterday, 01:16 PM

Amphetamines would certainly show up on a urine test. I know someone who tested false positive for Heroine because he ate a lemon-poppy seed muffin before a random drug test. So, you have to be careful.

 

MJ use is still a federal crime, even though it has been de-criminalized in some states. So, you need to be very careful before making this decision.

 

MJ is not a main stream treatment for N or C. I have not heard of any sleep medicine specialist who has prescribed it for treatment, although that may have occurred.

 

Since I am currently going through some of the life events I mentioned above, I am thankful that I can honestly answer "no" to any questions regarding drug or alcohol use. I have had maybe 1 drink a year for the past 8 years because it makes me feel like &^%$. So, it makes my answers very simple and uncomplicated. I would not want to be getting into the medical marijuana debate with  someone who was scrutinizing my life decisions.

 

People will make their own decisions about their treatment. I am tossing this out because it is far too easy to make decisions with little to no awareness of the consequences. Just food for thought.

 

 

I agree with Ferret on the validity of treatment of medical MJ wholeheartedly, but I have to agree with you Hank, on the fear of severe implications of even a fully-legal Rx of MJ, and how it could effect something like a child custody case.

 

We have patients at my work getting divorced and fighting each other for custody of their children, and it is UGLY. Both have subpoenaed one another's medical records, and are calling each other "unfit parents" due to (legit) Rx-drug usage and other medical conditions...

 

Benzos for anxiety for both, Ambien for sleep for both, painkillers for spinal disease for one & rheumatoid arthritis for the other, Adderall for ADD for one & Chronic Fatigue Syndrome/Fibromyalgia for the other, and MANY more...

 

Even though both have thoroughly chronicled legitimate Rx use, the enusing public court battles, nasty abuse accusations, medical documentation required, and harsh scrutiny from the courts is horrendous. I'd hate to ever have to face anything like that...

 

Even mild physical dependency on any legal prescription, without addiction or abuse,  can be twisted make a parent look unfit- as can many medical conditions, especially mental ones.



#55 Ferret

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Posted Yesterday, 01:30 PM

What a sad, sad world....and a POX on any parent who stoops that low. Remember that children do grow up and will find out the truth of your actions if they were done in an underhanded manner.

 

BTW, had the discussion about the "poppy seeds" with my (then 12) granddaughter in March of this year. I just about choked when she said it and choked again when she said that her "science" teacher told her that. I can't find the link now but...you would have to eat something like four and a half pounds of poppy seeds to test positive on a drug test. That's a seriously big lemon/poppy seed muffin.



#56 Hank

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Posted Yesterday, 02:31 PM

Before I was diagnosed with cataplexy, I was accused of being drunk several times, including once by a police officer at 10 am. After diagnosed, I was accused by a police officer of being intoxicated- my medic alert bracelet helped me set that straight.

 

It was a lot easier for me to say that I do not drink and was not drunk. If I said, well sometimes I drink or get drunk but I wasn't drunk this time, I would have had less credibility.

 

I am going through a divorce now. Narcolepsy is being presented as a mental illness for which I am on multiple medications (2). Of course this is baseless and her position is weak, but I still have to defend myself against the accusations. And that gets expensive and time consuming.

 

I am glad I can just check all the boxes "no" for recreational drug and alcohol use. I don't have to equivocate or explain. All my medical records support that. All my friends and family know that to be true.

 

If you choose to use MJ, I would suggest being very confident that your future will always be uncomplicated. Sometimes, we need to consider how our decisions would sound from the witness stand.

 

While this is an imperfect world, it is just best to accept that it is imperfect and live with that in mind. I do not want to hang my hat on my children learning in the future how unjustly I was treated with false accusations. I would rather win and never discuss it again. And that is what I am prepared to do.

 

So, MJ may have its merits for some. Just don't cry about the injustice of it all when it comes back to bite you. You will have walked right into a trap. The only way to prevent that is to avoid it. And avoiding it comes waaaay before you ever know where the trap is set.



#57 Hank

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Posted Yesterday, 02:40 PM

Also, regarding poppy seeds, here are some links for you. Just a bagel or muffin is enough for a false positive:

 

http://www.snopes.co...s/poppyseed.asp

 

http://www.bidmc.org...?ChunkID=156998

 

http://www.usada.org...tive-drug-test/

 

http://www.discovery...st-minimyth.htm



#58 ThorBearPig

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Posted Yesterday, 03:49 PM

Totally agree with the warnings to be prepared to deal with the consequences of MJ use. That's the reason why I'm not using it on a trial and error basis right now to see if it can effectively treat N. But if/when I get a new job (one that doesn't drug test) and move to a more progressive state in terms of drug laws, I will certainly give it another go.

However, I'd really really like for some studies to come out on this considering there are plenty of states now that will allow such studies to occur. It seems odd to me that to date, I haven't come across anything scientific looking at the effect MJ has on N. If anyone out there comes across such literature, please post a link.

#59 Ferret

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Posted Yesterday, 11:37 PM

@Hank

Nice work on the research. I can't find my link at all and it hardly seems worth looking for the rebuttal when you've presented your case so well and so logically.