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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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.
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.

Polar Bear
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Location: United Kingdom

Re: Medical Marijuana

Post by Polar Bear »

Steve, very happy this is working for you.
Betty
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

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

Re: Medical Marijuana

Post by NatWest »

Hi Steve,

I was very happy when I read your post. Happy that you've found a combination that's working for you. Your experience sounds a lot like mine. I've found that a combination of THC and CBD works best. And I take them separately. The owner of the dispensary I go to called me a few months ago to let me know his wife had made some cooking oil from some Trainwreck mj and that he'd brought in a couple of bottles for me. When I went in, he actually gave them to me, for free. He gave me the recipe, and I just made a batch myself in the slow cooker last week, using Mr. Purple Nice Guy mj, which is about 15% THC and 1.2% CBD. I take a CBD mm separately. Both at bedtime. What I've found is that the TCH seems to "lock" my legs to the bed, so they don't move. I know that sounds strange, but it's the best way I can describe it. I poured it into an empty tincture bottle and take 2 droppers full, which is about 1/4 tsp. (I'd previously had that same experience you describe with some THC, of waking up in the middle of the night and not being able to walk, or feeling like I'm hallucinating, but that hasn't happened with the oil)

I do want to try the pills/gel caps that I've been hearing about. They aren't available at my dispensary yet. But last time I was in, they had a patch, which I also plan to try.

I don't know if you've tried going to leafly.com yet. It is a great web site for info on mm/mj, and lists dispensaries in the area and the inventory they have in stock, updated daily, as well as descriptions of all the different strains. They list both medical and recreational.

Anyway, great to read your update! Hope you'll continue to share your experiences! It's very helpful to those of us who are also experimenting, and trying to find just the right combination.

Peggy

Desertphile

Re: Medical Marijuana

Post by Desertphile »

I am wondering if there is a single web page that explains the subject clearly, stating what is known to be true and what is not. I do not know what "THC" and "CBD" are, nor do I know anything about cannabis. Is there one web page that explains how cannabis is applied in the treatment of Willis Ekbom disorder? I don't have any interests in anecdotal evidence: I want to see peer reviewed papers, published in science journals.

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. This has reduced me to a babbling, befuddled, stumbling lunatic--- yet I still work a full day, toiling outside.

Some people in this forum thread have claimed that a cannaboid has helped them to "instantly" quiet their legs. I find that claim extraordinary, and I do not believe it. I am willing to try damn near anything if it means I can get some sleep. 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.

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 »

Sorry, but I do not know of a single source of information that even comes close to what you are looking for.

Part of the problem is that there is a Catch-22 with respect to research on the use of marijuana for the treatment of RLS/WED. The government says that marijuana is a drug with no redeeming value, i.e. it is not effective at treating any medical conditions. It draws this conclusion because there is no research to say otherwise. The problem is that no research agency can get approval to study a drug that the government says has no redeeming value. Even cocaine is not put into this category because it can be used as a topical pain-killer. As a result of changes in various state laws in the US, there are a couple of studies for non-RLS treatments that have gotten started, but the strings attached to those studies almost guarantees failure to come to any conclusions. A couple of studies are also underway on in Europe where the laws are a bit more lenient.

As for THC, it is the shorthand for Tetrahydrocannabinol. This is the family of marijuana chemicals that results in the high, or stoned, feelings. CBD is for Cannabidiol. CBD is the family of chemicals that result in the feeling of relaxation, sleepiness and reduced anxiety. Marijuana high in CBD is what is being used in many areas to treat children with "untreatable" seizure disorders.
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.

JimmyLegs44
Posts: 90
Joined: Thu Oct 01, 2009 5:24 am

Re: Medical Marijuana

Post by JimmyLegs44 »

Desertphile wrote:I want to see peer reviewed papers, published in science journals

I'm sure there were peer reviewed papers, published in science journals, 10-15 years ago touting the use of dopamine agonists for RLS. Look how that turned out. I don't put any more stock in so-called peer reviewed studies than I do in anecdotal evidence.
The best way out is always through. - Robert Frost

Desertphile

Re: Medical Marijuana

Post by Desertphile »

"I'm sure there were peer reviewed papers, published in science journals...."

There are none listed in the Web of Science ( ISI Web of Knowledge) for any such paper, published anywhere in the world, in the past 55 years.

" I don't put any more stock in so-called peer reviewed studies...."

Peer review is the best tool humanity has to determine what is true and what is not true.

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, Jimmylegs was not saying that there were peer reviewed articles on marijuana. The statement by Jimmylegs was that there were peer reviewed articles on the use of dopamine agonists to treat RLS and that the DAs are now creating more grief than relief.

As I stated before, the reason you will not find any peer reviewed papers on this topic is because it is not possible to get either the funding or legally get the marijuana to perform the sorts of research that is necessary to write a paper that can be submitted for peer review. So, no research = no papers. What we really need at this point is for someone in the government to wake up and accept the fact that marijuana needs to be moved from Schedule I to Schedule 2. Schedule 1 is a drug with no redeeming medical value. The number of anecdotal cases of children with un-treatable seizures who do well on high CBD marijuana is too overwhelming to ignore. Once the reclassification occurs, then you will see numerous of studies pop up with the resulting peer reviewed papers in a year or so.

I should also add for disclosure that I review several papers in my field every year, so I am intimately familiar with the peer review process.
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.

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

Re: Medical Marijuana

Post by NatWest »

Thank you Rustsmith and Jimmylegs for sorting out those details.

I would like to add that when I've used the word "instantaneous" in some of my previous posts, and I also used that word in my recent visit with the MM doctor I saw 2 weeks ago to renew my MM card, I meant about 3 minutes, sometimes less, as compared to pacing around for anywhere from 30 minutes to 2 hours or more trying to relieve symptoms. If I'm having symptoms in the evening, I can go in the bedroom, take 2-3 hits off the vapor pen, and by the time I walk back out to the family room and sit back down, the symptoms are 100% gone. To me that is instantaneous.

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

Re: Medical Marijuana

Post by badnights »

I'm sure there were peer reviewed papers, published in science journals, 10-15 years ago touting the use of dopamine agonists for RLS. Look how that turned out. I don't put any more stock in so-called peer reviewed studies than I do in anecdotal evidence
The problem there was not with the peer-review process but with the limitations inherent in the design of the studies. None of the early studies were designed to test the effects of DAs after years of use. They tested months of use, and some eventually followed patients on DAs for 2 years. But it was a long time (at least 10 years, think about it) before any studies could report results for patients taking the meds for 10 years. By then, the meds had been approved and over-used for WED/RLS, with the consequences we know too well.

So there might be a problem with FDA requirements - should drugs be tested for 10 years? 20 years? 50? before being approved? What if a new drug is showing great promise in early studies, do we still wait 10 or 50 years (whatever is decided on)? What if numerous anecdotes show patients experiencing great benefit from a substance, do we still wait 10 or 50 years to be sure there's no surprise down the road? We could discuss that, and there's a lot to say, but it doesn't have anything to do with peer review.

There are certainly problems with the peer-review process, with how reviewers are chosen and how each reviewer conducts a review, among other things, but I would never advocate getting rid of it. Done properly, it can only enhance the quality of published research.

Anyway, I think you meant to compare anecdotal evidence to blinded or double-blind studies. I would agree that anecdotal evidence often leads the charge, with published case studies and other anecdotes showing the promise of a substance long before any studies have confirmed it. I would never discount anecdotes. I really wish there was enough funding for repeated studies to confirm or explain every anecdotal success! It's so hard for researchers to get funding - the only sources are pharmaceutical companies and governments.... and problems of bias and insufficiency with those sources.
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.

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

Re: Medical Marijuana

Post by ViewsAskew »

Excellent post, badnights!
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.

Polar Bear
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Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Re: Medical Marijuana

Post by Polar Bear »

Excellent point about how long do we wait before drug approval to find out about any possible 'surprises'.
Betty
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

Desertphile

Re: Medical Marijuana

Post by Desertphile »

There are entire science journals, and hundreds of books, on the subject of medical studies and ethics. When a new drug is tested on humans, it means the people in the control group are left untreated, or provided with other treatments. If the new drug has a 70% efficacy but the previous treatments have a 15% efficacy, that means individuals in the control group died needlessly--- but it is vitally important to have a control group or two.

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

Re: Medical Marijuana

Post by badnights »

yes, it's an interesting moral dilemma. There is also the possibility that, if the trial is cut short so that the controls can receive the medication, long-term effects - even fatal ones - are not uncovered in time. It's hard for the mind not to go in circles when contemplating these things.
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 »

Today I spent about six hours studying the subject on-line. I do not want anyone to think the following is advice (medical or otherwise).

*PERHAPS* it is efficacious to treat the symptoms of WED using strains have the lowest THC, highest CBD. In general, Indica strains are described as best for night time use; perhaps one would wish to avoid the Sativa strains unless the THC is extremely low. Some growers of medical strains have produced strains with CBD at 8.13% and THC at 5.5%.

Maybe I can talk to a few medical people in the Boulder, Colorado, area and discuss writing a grant proposal to study the effects of CBD on WED/RLS patients. I will write to some and ask if they are interested.

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