Medical Marijuana

Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS/WED, 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.
yawny
Posts: 232
Joined: Sun Nov 08, 2015 4:20 pm

Re: Medical Marijuana

Postby yawny » Tue Jul 10, 2018 8:14 pm

AriaLittlhous wrote:I find that the thc calms my legs, but makes my mind active, even the indica. Still the relief from the pain is very welcome.


THC makes my mind active too, to the point where I can’t sleep and walls become very interesting to stare at. What works for me is CBN (not CBD) and you get it by ageing the THC. I used to put the marijuana flower in a mason jar in my window for about a month but then figured out a quicker way by way of a UV light in a box. CBN is considered “nature’s benzo” and I think it was discovered by “recreational enthusiasts” after finding an old bag of pot that had been forgotten and therefore was aged. It makes me very sleepy, relaxed, and I’m able to turn off my thoughts and go to sleep. I primarily have PLMD now (LDN seems to have stopped my RLS except for rare, mild, and short lived events) and CBN doesn’t stop the movements. Along with a cocktail of low dose medications I’m able to sleep and feel moderately rested most days. You won’t hear about CBN a lot but if you ask about it people are usually familiar with it at dispensaries. Although not many doctors familiar with medical marijuana are familiar with it. Many think I’m messing up how I’m saying CBD when I explain my protocol, but recently I saw a naturopath for my mother who has sleep problems and the doctor asked if we had tried CBN, so hopefully it’s catching on.

NatWest
Posts: 132
Joined: Wed Jan 06, 2010 7:06 pm

Re: Medical Marijuana

Postby NatWest » Tue Jul 10, 2018 11:46 pm

Hi Aria,

What I've found in the 3-4 years I've been using it is that some strains work great and others don't really work at all. I agree, that it often seems that the THC does make the legs more relaxed. Overall though, for me, the combination works best. The CBD does stop the jerking as long as it's taken with the THC, I usually take slightly more of the THC than CBD. Lately, I've been taking a CBD tincture that is supposed to be 4 times stronger, so I'm trying to take a little less of it. And the other thing I've found is that when the RLS wakes me up 2-3 hours after falling asleep, I need to immediately take another dose of both. If I wait too long, or wait for the previous dose to start working again just because I'm up walking, that doesn't work. I now take another dose of both, right away, then walk around a bit, and usually I can go back to sleep about 20 minutes after dosing.

It's taken me a long time, but I am getting more sleep these days, and have more energy again. What I'd really love, though, is if they could figure out exactly what works and put it into a capsule so we could just swallow it and be done.

Peggy

AriaLittlhous
Posts: 6
Joined: Tue Jul 10, 2018 1:29 am

Re: Medical Marijuana

Postby AriaLittlhous » Wed Jul 11, 2018 6:46 am

Thanks Peggy. Relative to you, I've just started experimenting and I did start trying to make the cbd work, w and w/o thc, though I could try to vary that. Right now unless I take very high amounts of thc, over 25 mg, I just don't sleep. It calms my legs w/o any cbd. I'm wondering if cbd might work better for people who are thc "naive".

Polar Bear
Moderator
Posts: 7222
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Medical Marijuana

Postby Polar Bear » Wed Jul 11, 2018 10:02 pm

Anything I've read on CBD oil for RLS seems to lean towards needing a small trace of THC for symptoms relief.

I don't sleep either, my medications being of the more tradional type.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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: 132
Joined: Wed Jan 06, 2010 7:06 pm

Re: Medical Marijuana

Postby NatWest » Wed Jul 11, 2018 10:23 pm

Hi Aria,

I have to say that I do know exactly what you mean about THC. It definitely does help me go to sleep, and there's the "couch lock" or "leg lock" sensation where I feel like my legs are glued to the mattress, which is a great incentive to fall asleep. I guess I've been using the combo all this time because on my very first visit to a dispensary, after I received my very first MM card, the person who helped me recommended Critical Mass in a vapor pen. It worked immediately! And it continued to work for about 2 years, but it was sometimes hard to find, the dispensary was frequently out, but nothing else worked as well. It was close to 50-50, CBD-THC, but slightly more CBD, maybe 3 percentage points. But it would have me soundly asleep, in about 15 minutes. But, maybe tonight, based on what you've said, I'll try just the THC tincture and see how it goes. It would be nice to only have one thing to buy. I also know what you mean about your brain being very active. I've found that concentrating on deep breathing helps my brain to let go of all the craziness THC can dispense to your brain. THC can make me start analyzing everything I've ever done in my life, which can take up a lot of time! :) Hope this makes sense!

AriaLittlhous
Posts: 6
Joined: Tue Jul 10, 2018 1:29 am

Re: Medical Marijuana

Postby AriaLittlhous » Wed Jul 18, 2018 2:31 am

Can people please post the ratio of cbd to thc they’re using? Strains, delivery method and whether you were thc “naive” or not would also be very helpful. I’ve had enough luck that I feel like I want to keep trying, but it is hard. I’m tired.

pinkynose
Posts: 74
Joined: Sat Apr 25, 2015 10:58 pm

Re: Medical Marijuana

Postby pinkynose » Sun Aug 05, 2018 6:19 pm

Hi guys.
I could have jumped in on a number of posts so I'm just doing a quick reply instead.
I relate 100% to Yawny on CBN. I have tried all combos of MMJ and regardless of what the percentage is, or if's it's Sativa dominant, Indica dominant or a hybrid, THC activates my brain. I can have the most extreme couch lock and my brain remains active. Those times are the worst. I imagine being buried alive and still conscious (I've been reading too many Edgar Allan Poe stories!)

I recently took a trip to Colorado primarily to get my hands on Mary's Medicinals CBN capsules. I slept great while I was there. It's not the answer for RLS but it sure helps insomnia.

On the subject of electric blankets that NatWest, RustSmith and others mentioned: I love my electric blanket (and I live in the tropics.) Just 2 night ago my feet were super cold and there was no way I was getting to sleep. I put it on and it was a huge help. When it gets colder I like to "Preheat" my bed. When I get in I'm nice and toasty and can usually turn it off. It seems to be a help in falling asleep for me. I can't use socks as I have small fiber neuropathy and socks feel yuck.

NatWest
Posts: 132
Joined: Wed Jan 06, 2010 7:06 pm

Re: Medical Marijuana

Postby NatWest » Sun Aug 05, 2018 9:28 pm

Hi Pinkynose,

I agree, I think the electric blanket has been the single most helpful thing I've tried. I still need to take the tinctures, but the combination has allowed me to start sleeping longer segments, 4+ hours between doses. Last night I slept 8 hrs and 30 minutes total, only waking up twice, for about 15 minutes each time. I'm really happy when I hear that others are beginning to find some relief, too. Can you imagine if our doctors prescribed medicine, but didn't tell us how much to take or when or how often? .... but I'm finally starting to feel like I'm seriously improving. And a big part of that is a result of reading what others are doing that seems to be working for them.

So thanks for your post! Peggy

Yankiwi
Posts: 346
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: Medical Marijuana

Postby Yankiwi » Sat Sep 08, 2018 12:03 am

Radio New Zealand had an interesting interview with an expat Kiwi living in California who has developed a range of cannabis teas specifically for women (although I don't know why they wouldn't work for men). The interview is 23 minutes long but, I think, worth the listening time.

https://www.radionz.co.nz/national/programmes/saturday/audio/2018661684/amanda-jones-cannabis-tea-producer-based-in-california

She and a friend started researching medical marijuana to help another friend with terminal cancer. Here's a link to their company:

https://kikoko.com/makes-teas-different/

I'd be interested to hear if anyone living in California tries any of these.

BeckyS
Posts: 1
Joined: Tue Oct 16, 2018 7:43 am

Re: Medical Marijuana

Postby BeckyS » Tue Oct 16, 2018 6:39 pm

Just wanted to say I am so happy to read one account here of another RLS sufferer who has found total relief with MMJ and has been able to stop all Rx meds. I've augmented on all the dopamine agonists, had allergic reactions to patches, had side effects from gabapentin (but not so much with Horizant, which is gabapentin encarbil - don't know why) and while low dose methadone also stopped my RLS symptoms 100%, the psychological side effects are not something I can deal with long term. My doctor has told me he doesn't know what to do. So my last option seems to be MMJ. I hope that it will be 100% effective and I can stop my current Rx of Horizant, methadone and trazadone. My state (Arkansas) legalized it over 2 yrs. ago, and those of us who have been approved for a MMJ card are just waiting for the dispensaries to be licensed so that we can get our cards and obtain safe, locally grown MMJ. I hope that the RLS Foundation can and will fund research that will result in more than anecdotal evidence, so that RLS sufferers will be better informed. Thanks

Rustsmith
Moderator
Posts: 3347
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Medical Marijuana

Postby Rustsmith » Tue Oct 16, 2018 7:02 pm

BeckyS, the research into MMJ for RLS is just getting started. The issue was that since it is still against federal law, any research lab that receives federal grant money, i.e. all of them, would jeopardize that funding if they didn't satisfy all of the federal requirements for studying Schedule 1 drugs. That took time, but the University of Colorado is just getting started.

As for your issue with methadone, I also had psychological side effects from methadone after 2+ years on the smallest dose made. My doctor switched me to Tramadol ER and it is working well and I have not had any issues, yet. In a presentation made by Dr Earley of Johns Hopkins last month, he stated that all of the opioids are interchangeable with it comes to treating pain, but they are not when it comes to RLS. Therefore, if one doesn't work, then you simply need to try a different one and then keep trying until you find one that works and doesn't have unacceptable side effects.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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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