Medical Marijuana

Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
Rustsmith
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Posts: 6539
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Medical Marijuana

Post by Rustsmith »

Desertphile, that certainly tracks my experience with different products during the last few months.

As for encouraging proposal writing, you might want to consider writing to the Neuroscience department of the University of Colorado Medical School in Denver. I understand that there are several researchers there who may be in the process of becoming more interested in RLS/WED. If one of them is successful in getting a grant, I would certainly be willing to participate as a test subject and I think I know of a couple more within the state who would also volunteer.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Medical Marijuana

Post by badnights »

I want to cheer you on, desertphile
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Desertphile

Re: Medical Marijuana

Post by Desertphile »

Rustsmith wrote:Desertphile, that certainly tracks my experience with different products during the last few months.

As for encouraging proposal writing, you might want to consider writing to the Neuroscience department of the University of Colorado Medical School in Denver. I understand that there are several researchers there who may be in the process of becoming more interested in RLS/WED. If one of them is successful in getting a grant, I would certainly be willing to participate as a test subject and I think I know of a couple more within the state who would also volunteer.


There are.... issues to work out. :-) I have been talking with a grower about how to maintain THC and CBD ratios, and content, over a time frame of 12 months, spanning two study populations and two control populations. The biomechanics involved are complex. A proper study requires firm control over the chemistry of plants, and from what the grower has told me, marijuana plants love to vary--- not merely between populations, but within individual; plants based on environmental factors.

It means that controlling chemistry for a proper study would cost at least 30 times more money than not doing so; to save money, an adulterating compound would have to be introduced to restore THC-CBD ratios. It would be a mess to not only work out, but to justify to peer reviewers.

I will write to UC's Neuroscience study group.

Rustsmith
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Posts: 6539
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Medical Marijuana

Post by Rustsmith »

Yes, variation between plants is one issue that complicates a study. Another is that I can almost guarantee that at least one funding reviewer or peer reviewer for publication would vote no because the study was using real, plant based compounds rather than pharmaceutical grade pure THC and CBD. In fact, this touches upon one of the problems with some of the studies conducted so far in Europe. They used pure THC and CBD in order to have a controlled product and ignored the fact that the plant based compounds are so much more chemically complex with many modifications to both the THC and CBD molecules.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Icnflms
Posts: 15
Joined: Thu Jan 14, 2016 3:09 pm

Re: Medical Marijuana

Post by Icnflms »

Desertphile wrote: My WED has been getting worse, over the past 45 years, and if I am "lucky" I sleep one night in three, and often only three or four hours that night... Frankly, I have thought many hundreds of times that I would rather slit my wrists open and bleed to death rather than spend yet another night thrashing and kicking in bed, desperate for sleep.


Hi Desertphile,

I hope you don't mind me contacting you here on this thread, I have read some of your posts and am really sorry to read that you are suffering so badly with RLS/WED and that at times you feel so desperate.

I am currently putting together a documentary about Restless Legs Syndrome for broadcast in the UK. We are looking for RLS sufferers to share their story and in doing so help lift the lid on the so-called 'invisible illness'. RLS is often ignored in the UK and we are hoping with this documentary we can raise awareness and understanding. Here is a link to our company website and RLS documentary advert:

http://www.iconfilms.co.uk/whats-going-on.html If you would like to be involved please do get in contact - I would really like to be able to set up a phone call between you and our Researcher, Laura so you can talk about your experiences as an RLS sufferer, and coping mechanisms you have.

Thanks for your time.
Best wishes,

Ariane
Icon Films
rls@iconfilms.co.uk

Desertphile

Re: Medical Marijuana

Post by Desertphile »

Icnflms wrote:
Desertphile wrote: My WED has been getting worse, over the past 45 years, and if I am "lucky" I sleep one night in three, and often only three or four hours that night... Frankly, I have thought many hundreds of times that I would rather slit my wrists open and bleed to death rather than spend yet another night thrashing and kicking in bed, desperate for sleep.


Hi Desertphile,

I hope you don't mind me contacting you here on this thread, I have read some of your posts and am really sorry to read that you are suffering so badly with RLS/WED and that at times you feel so desperate.

I am currently putting together a documentary about Restless Legs Syndrome for broadcast in the UK. We are looking for RLS sufferers to share their story and in doing so help lift the lid on the so-called 'invisible illness'. RLS is often ignored in the UK and we are hoping with this documentary we can raise awareness and understanding. Here is a link to our company website and RLS documentary advert:

http://www.iconfilms.co.uk/whats-going-on.html If you would like to be involved please do get in contact - I would really like to be able to set up a phone call between you and our Researcher, Laura so you can talk about your experiences as an RLS sufferer, and coping mechanisms you have.

Thanks for your time.
Best wishes,

Ariane
Icon Films
rls@iconfilms.co.uk


Good evening (if I did the time conversion correctly) Ariane. You can expect email from me in an hour or less. I live and work in a forest, far from telephone access, but some times (one or two days a month) I go in to town (Santa Fe, New Mexico) where there is cellular telephone access. I recently finished participating in a UK-based documentary, which will be released in movie theaters presumably in year 2016, so perhaps I ask the producer of that project if he would talk to you about what passes for my personality--- it is not for me to say if I would be worth your time. It is 11:34 PST January 20 2016 at the moment where I am; -7 hours from you; I will send email to rls@iconfilms.co.uk

Desertphile

Re: Medical Marijuana

Post by Desertphile »

Rustsmith wrote:Yes, variation between plants is one issue that complicates a study. Another is that I can almost guarantee that at least one funding reviewer or peer reviewer for publication would vote no because the study was using real, plant based compounds rather than pharmaceutical grade pure THC and CBD. In fact, this touches upon one of the problems with some of the studies conducted so far in Europe. They used pure THC and CBD in order to have a controlled product and ignored the fact that the plant based compounds are so much more chemically complex with many modifications to both the THC and CBD molecules.


I see in the news recently (past two days) that France has seen a terrible accident with a clinical trial for a pain relief drug that was designed to block CB1 and CB2 neural synaptic receptors and thus mitigate pain. Considering how hyper-delicate the brain chemistry involved is, it seems to me the attempt to test on humans was utterly inexcusable. The receptors involved regulate a bloody hell of a lot more biomechanical processes than pain signalling--- the reuptake of dopamine and serotonin is involved, as well as brain temperature modulation, as well as synaptic exhaustion thresholds. sh**, it has been known for a few decades that **** with CB1 and CB2 receptors with cannabinoids increases the risk of schizophrenic events and behaviors.

We already have a fairly safe pain reliever that targets CB1 and CB2 receptors: it's called "marijuana." It is by no means completely safe, but it's much safer than a synthetic inhibitor.

Rustsmith
Moderator
Posts: 6539
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Medical Marijuana

Post by Rustsmith »

That is a tragic outcome in France. It will be interesting to see the results of the investigations as to what extent of animal toxicity testing was done before starting the clinical trial. Looks like there could be lots of errors for this one.
But in some ways, this just goes how far the existing marijuana laws are forcing big pharma to go in producing synthetic "look alikes" rather than concentrating their efforts on patenting hybrid marijuana to maximize benefits for the various conditions that it seems to help.
On a different note, I noticed today that both Canada and Mexico are possibly on their ways to legalizing recreational marijuana. Neither is a foregone conclusion at this point, but they seem to be much further down the discussion road than the US Federal government.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Desertphile

Re: Medical Marijuana

Post by Desertphile »

Rustsmith wrote:That is a tragic outcome in France. It will be interesting to see the results of the investigations as to what extent of animal toxicity testing was done before starting the clinical trial. Looks like there could be lots of errors for this one.


Just my guess, but I suspect the humans were given far too much of the drug. It takes an extremely tiny amount of THC and CBD to mitigate pain via CB1-CB2 receptors; block too many, and the brain cannot regulate synaptic firing--- they will keep trying even past exhaustion, when the necessary molecules are no longer present. When that happens, the brain "fries" by getting too warm; brain death can occur. It greatly annoys me that the project was even considered.

It seems to me you are correct; if cannabis use were widely legal, trying to make a drug to target CB1 & CB2 would not be attempted.

ViewsAskew
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Posts: 16599
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Medical Marijuana

Post by ViewsAskew »

Yikes, Desertphile and Rustsmith - I hadn't read about this. Sounds like I almost do not want to!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

NatWest
Posts: 162
Joined: Wed Jan 06, 2010 7:06 pm

Re: Medical Marijuana

Post by NatWest »

There was an article in the NYT a few days ago, I will find it and post a link for those who would like to read it.

Desertphile

Re: Medical Marijuana

Post by Desertphile »

One article here:

http://gizmodo.com/french-drug-trial-le ... 1753137077

Note the correction at the bottom of the article.

Desertphile

Re: Medical Marijuana

Post by Desertphile »

ViewsAskew wrote:Yikes, Desertphile and Rustsmith - I hadn't read about this. Sounds like I almost do not want to!


The accident was and is inexcusable for at least two reasons. I suspect, but I do not know, that the tests on non-human primates showed efficacy levels and toxicity levels, which were then "scaled" to human body-brain ratio for clinical testing on humans; the victims who have suffered brain death and brain injury may have received the largest of the test dosages (I've no way of knowing if that is true). The problem with that approach is that humans have had a symbiotic relationship with cannabis for at least 5,000 years because CB1 and CB2 synaptic receptors are found in our common ancestors that diverged from our lineage many tens of millions of years ago--- a process of evolution that occurred before land animals existed. That means the chemistry is fundamental to human brains' biochemical and biothermal regulation; even a tiny "tweak" in one process will cascade in to a great many other processes. We already have a drug that does this safely; there was no need to try and create one.

The drug being tested did not contain any cannibanoids; instead it was designed to mate with receptors in the brain where cannabanoids mate. The drug was designed to mimic THC and CBD. My rough calculation shows that the human brain can handle about 50 "joints" (15% THC, 28 grams) before toxic levels are reached. I suspect, but do not know, that the drug's test subjects were given a much higher equivalent and blocked far too many CB1 and CB2 receptors.

NatWest
Posts: 162
Joined: Wed Jan 06, 2010 7:06 pm

Re: Medical Marijuana

Post by NatWest »

http://www.nytimes.com/2016/01/18/busin ... tcore-ipad

French prosecutors have begun a manslaughter investigation after a man died after taking part in an experimental drug trial for a painkiller.

Rustsmith
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Location: Colorado Springs, Colorado

Re: Medical Marijuana

Post by Rustsmith »

My experiment with mj continues. I am still working on getting a Colorado medical mj card, so I am having to rely upon the products available at the recreational stores rather than being allowed into the medical ones. The stores tell me that the products carried are somewhat different because the recreational stores tend to stock the products that are higher in THC than CBD. So here is a summary of what I have found. I should add that because I also have mild asthma I cannot smoke it, so I have to rely upon edibles and tinctures.
One week on a 90/10 THC/CBD edible product at bedtime. I slept great, but I knew that when I woke up during the night I was very stoned and had a hard time walking.
Two weeks on a 50/50 THC/CBD tincture. This worked fairly well because I was averaging an hour more sleep each night and I was sleeping more soundly. Also, the higher CBD tends to block the stoned aspect of the higher THC, so I wasn't getting the THC high during the night.
One week on 10/90 THC/CBD pills. These are working well. I am still getting the time benefits and am sleeping even more soundly. I don't have daytime sleepiness even though I am still augmented on pramipexole and waiting to get an appointment with an RLS specialist in Denver to fix that. These capsules appear to be ground up mj leaf or bud. The product is still new to the area, so even the workers at the store are not familiar with it. I am just happy that they had it in the recreational store and did not send it all to the medical store like the rest of the high CBD products.

I should also add that I would have a very mild headache the next morning after using either the 90/10 or the 50/50. The headache disappeared in about 30 minutes and I attributed this to a "hangover" from the THC. However, with the 10/90 high CBD pills, I feel fine the next morning.


Continued update:
I have not tried three different non-smoked versions of marijuana. 1) An almost 100% CBD capsule of what appears to be ground up plant material, 2) a 50/50 THC-CBD tincture in an ethanol solvent and 3) candies of 100% THC. What I have found is that the CBD appears to be good for the anxiety side effect of RLS and is very calming, but it hasn't done me much good with my sleep. It is also rather slow acting, on the order of an hour or two. The 50/50 tincture is very fast acting and seems to be effective in stopping an RLS "attack" before it really gets started. However, I will need to use it for a while more in this mode to know if it really is the tincture as opposed to the RLS simply subsiding. As for the THC, it turns out that this is what is really helping me sleep. The candy takes an hour or two to become effective, which means that I don't feel stoned before going to bed, but it does help keep me asleep. If I do wake up, I have some loss of coordination, but I am getting more sleep with the THC than gabapentin, mirapex or any other formal medication has provided. I am currently using only 5mg of THC, which is about half of the "normal" recommended dose. Hopefully it remains effective for a reasonable time.

Now, if only the world would wake up so that I could travel outside of the state with it. :)
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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