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.
vinton wrote:I cant take mirapex or any of that med type so I'm thinking of marijuana. Here in canada its legal for medical purposes but available in pills. I've never tried it but some friends cultivate it and without any addditives. So what is your opinion on this?
Thanks
Like you I have trouble with mirapex. I take 0.75 mg of Mirepex every night, but I endure 2 to 3 hours of nausea in the morning. I've tried to go off Mirapex several times for 4 days at a crack. During those four days I was not able to lie down or sit down. I was falling asleep on my feet and crashing into walls. Like you, I live in Canada and am considering whether are not marijuana would help me. Like several of the people on this site I am worried about the effects of smoking marijuana. I would be interested in anything anyone can add.
Well, I gave it a try, and it didn't work for me. Now I go to a pain clinic to get my meds and I have to pee in a jar to make the DEA happy, before they can give me my meds. So I'm done with it. I'm bummed that it didn't work. I would rather smoke some pot every night than spend my life going from doctor to doctor to get meds that work for my RLS.
It's up to you, but it seems worth a try. Especially since you have medical marijuana in Canada, and you can get some that's reasonably pure. Just take it slowly. It can have some undesirable effects if you take too much, too quickly.
Jim, I can attest to the nastiness encountered when stopping Mirapex It is a truly horrid time for some people. It's weird, but many people have no problems. But some of us? Yikes. That can last a few days to a week, to a couple of weeks. But, the vast majority of the time it goes completely away and the RLS goes back to the prior level. The only thing I have heard of that helps during that time is opioids. Dr Buchfurer emailed me to say that would be the best bet - I had tried 3 times to stop it and couldn't. With the help of some strong opioids, I was able to stop it. So, when you and your doc decide it's time to stop it, at least you know there is hope.
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.
SquirmingSusan wrote:........ My son piped up with, "Geez mom, I can get you some pot at school. I see about 10 drug deals a day." (Why am I sending my kid to public school?!) Now he claims to have the munchies whenever he gets near my room. What a nut. (Yes, I have talked with my kids about drugs. And they're both very responsible that way.)......
........But then again, I really freaked out the nurse yesterday at the doctor's office when I told her I tried smoking pot for my RLS. "BUT THAT'S ILLEGAL!!! If you care about that kind of stuff." I assured her I didn't care.
I think God created some of these medicinal plants for a reason!
Susan
My sons are older (in their 20's) and don't use recreational drugs but are always offering to get me marijuana. I've told them that I've tried it and how well it works for me. I'd much rather use it than the 6, 300mgs of neurontin and 2, .50mgs of mirapex every night plus an occassional pain med for Fibro! Two or three puffs, sitting on the edge of my bed at bedtime, and I have no movement and go sound asleep! I don't wake up feeling like I have an alcohol hangover either. I would exchange the med for the pot in a heartbeat, but am scared to death for my sons to get caught buying or in posession.
Every time I see a new doctor, and there are many , they always ask about alcohol and 'street' drug use. They'll ask, Do you use recreational drugs? I always answer, Not Yet. lol...love the looks I get.
IMO, marijuana would be my perfect RLS/PLMD remedy and I know that with it's use, my life would actually be worth living again.
this is a difficult call. i use mj and it settles my legs totally, apart from the odd time. except i'm trying to get off it because when you don't use it you have a mildly better head to do things the next day.
there's definately trade offs but seeing your comments on actual pharma drugs i think i'll have to stick with mj for now.
the fact it's illegal makes it worse as you feel like some sort of criminal (which i am i suppose) but if it wasn't for rls i'd have given up a long time ago once i was past my recreational phase of my life.
but it's true, it doesn't work for everyone but it certainly has properties for alot of debilitating illnesses.
Kimberly, if you really wanted to use mj, you could probably get one of your boys to introduce you to someone, and then cut them out of the loop. I know I would much rather smoke that stuff (if it worked, which it doesn't for me) than have to go to the doctor and pick up my schedule 2 prescription every month.
I don't know what the penalties are like in Ohio, but in Minnesota if you have less than an ounce (it actually might be more than that) it's a misdemeanor. It's all a judgment call about what you want to do, but you should be able to find some without involving your sons.
Yeah, I agree about bypassing your sons; that's very awkward. If you're very discreet, you'll start finding out that probably 1/4 of the people you know smoke it. I had three people offer to get it for me within a couple of weeks. A man I know supplements his pension. And on and on. This is one beneficial weed and I'll be happy when it's no longer illegal.
For those who are concerned about the effects of smoking marijuana, a tincture or extract can work as well, without the potential problems of smoking.
Cannabis can be extracted into alcohol, glycerine, butter or oil. If you extract into oil or butter, the resulting product can be baked into cookies or brownies, or cooked into pesto or other sauces.
Glycerine tincture can be held under the tongue for quicker onset, but making glycerine tincture takes a while, and can be a bit messy. Alcohol extract made with 100-proof alcohol or higher is quick, but the alcohol is problematic.
If you use extracts, you'll need more material to get the same effect as you would from smoking - but the effect is more body-focused, less 'stoney', and lasts longer. When using extracts, titrate for effect, being aware that onset can be an hour or longer - don't wait 15 minutes, take more, wait 15 more minutes, take more...that can end up feeling rather unpleasant.
If you really need immediate onset, but don't want to jump for the several hundred dollars for a good vaporizer, you can get a pipe called a Vapor Genie, which is a pipe with a heat diffuser that screws into the top. You use a butane lighter to heat the diffuser while drawing air through the pipe, and with practice you can get the material to the proper temperature to vaporize without burning. They run $50 - $70US, depending on where you buy it.
becat wrote:I HATE THIS POST. Seems more fitting for magazine High Times than our support board. Must be getting old.
Sorry it bothers you, Lynne. I believe if people find cannabis of legitimate medical use they should know about avenues of administration that aren't as harmful as smoking. The point isn't to get high, but to get to sleep!
We can leave the High Times to the young folks, I'm not interested.
I won't jump on my high horse (excuse the pun) and state it's no different than prescribing red wine in moderation.
anyway i would like to say that for anyone thinking of ingesting MJ without smoking to be extremely careful of quantities as for some individuals it can make the drug more potent.
but it's a valid way of bypassing the effect of smoke.
i tried using a vapouriser but it didn't work as had hoped. instead of a slumber body effect (for the legs) it actually woke me up! so it's not for everyone.
I agree with Alf - In younger years, I remember that when putting it in food, etc. you could never judge what the effect would be. And our goal really is to get to sleep. I don't like smoking -- I quit cigarettes in 1980 and am so happy I did. And maybe I'm just hoping that having about three puffs a night won't be harmful. When I balance it against some of the truly scary drugs I've taken trying to get some sleep, it seems okay. I've talked to people in the legal field, from probation officers to federal judges, who are against laws for having small amounts of this stuff. I also tell my doctors what I'm doing -- and several had said "well, it's better than a lot of things you could be doing."
RLS is such a struggle. We're up against people who make fun of it, and it does sound silly, but only people who walk the floor for endless hours and have their lives drastically altered by not being able to function, can know how desperate we get. This gives me relief. I'm so grateful I can use it.
Aff wrote:anyway i would like to say that for anyone thinking of ingesting MJ without smoking to be extremely careful of quantities as for some individuals it can make the drug more potent.
That's really true - like with every medication, everbody's different in how they react to it. It's also prudent to make a small batch to start off with to test how your digestion reacts, because some people get really queasy with it, or have other digestive upsets. And, to make things more complex, every batch will be more or less potent, because of what it's made with and how well it extracts. So every batch has to be titrated to so you can know your effective dose.
It is a truly horrid time for some people. It's weird, but many people have no problems. But some of us? Yikes. That can last a few days to a week, to a couple of weeks. But, the vast majority of the time it goes completely away and the RLS goes back to the prior level. The only thing I have heard of that helps during that time is opioids. Dr Buchfurer emailed me to say that would be the best bet - I had tried 3 times to stop it and couldn't. With the help of some strong opioids, I was able to stop it. So, when you and your doc decide it's time to stop it, at least you know there is hope.
, they always ask about alcohol and 'street' drug use. They'll ask, Do you use recreational drugs? I always answer, Not Yet. lol...love the looks I get. 
