Restless Legs Syndrome (RLS) Discussion Board

After trying Marinol a few months ago, I decided to go ahead and get my medical marijuana card. I first contacted a designated medical marijuana clinic in our state, and then had my medical records sent to them from my doctor's office. Once they received my records and determined that my documented WED qualified me, they scheduled an appointment with their MD. He gave me an exam, and discussed types of medical marijuana that would be effective. He completed the physician's form, the clinic staff completed other forms for me which would all be sent to the state. About 3 1/2 weeks later I received my card, and went to visit one of the many medical marijuana dispensaries in my area. I found the staff very friendly and helpful, and spent about an hour there, determining what would be the best treatment. I ended up purchasing a vapor pen, which is battery operated and comes with a USB charger, and a CBD cartridge. CBD is the form of medical marijuana used to treat children with seizures and other disorders, and doesn't get you high. Later that day, when I sat down to watch tv after dinner, my symptoms appeared. I kept sitting until I finally had to jump up because I couldn't take it any longer. I picked up the device, inhaled the vapor through the cartridge one time, and my symptoms IMMEDIATELY disappeared. I went right back and sat down. Normally, I would have had to stand, and/or walk around for 15 to 20 minutes, with no guaranty that the symptoms would not return. They did not return. I went to bed about 3 hours later, slept through the night, with no return of symptoms. They told me at the dispensary that the cartridge should last at least 3 months. It cost $40. The pen cost $10, and is reusable and rechargeable. The bottle of Marinol, which was approximately a 30-day supply, cost over $500! My insurance eventually covered it, but I couldn't be sure they would cover it again. And the CBD is much more effective. Hopefully, more states will legalize medical marijuana and make this, and other treatments, available for those who suffer from RLS. For me, this was absolutely the best treatment, after years of suffering and misery.

I am so pleased for you. Fingers crossed that your insurance has a positive attitude in the future.

Thank you, Polar Bear. I doubt my insurance will cover the CBD any time soon, but I don't really mind paying $40 for a 90-day supply. I don't plan to request any refills of the Marinol, since this is so much more effective. No more pills. I feel like a giant weight has been lifted off of me, which makes me feel about 20 years younger! LOL

That is a very doable price for many people. I wish it were offered here; at my last appt with Dr B, he suggested it, but my states rules about it are SO restrictive that I don't qualify.

I agree, views askew, the price is very reasonable. We are fortunate here, it has been legal since 1998. I told my husband that I wished I'd done this a long time ago, but I didn't realize until last summer that it could be used to treat things like RLS, or that it came in a formulation that left you feeling "normal."

I tried Medical Marajuana back in 2013. I did not get very much direction from my doctor, but I was able to find out that types of marajuana that had more indica worked better on problems like RLS. I made peanut butter sandwiches with the stuff and it seemed to help me sleep better but my symptoms during the day became much worse, so I stopped. Perhaps I didn't try the correct type.

Good morning! Indica is the variety I'm taking. The process of switching over, getting completely off of Mirapex, which I'd been taking since 2011, took about 3 weeks, gradually cutting down from 3 Mirapex a day, to 2, then 1, then zero, and during that time, especially the first 3 nights/days of zero Mirapex, my rls symptoms were horrible. But my symptoms are practically non-existent now. What I like about the medical marijuana is that it can be taken when symptoms occur, and it makes them quickly go away. I haven't had any symptoms at all in recent weeks, but do take a dose at bedtime. I use a vapor pen, which vaporizes the liquid so it can be inhaled. I plan to try some other forms next time I visit the dispensary. I hope something I've said will be helpful to you.

Do you have any other details on the variety, besides Indica? Is it pure Indica or a hybrid, if hybrid what's it called? Or any other details you might have access to, so others of us might be able to find the same thing.

Does one have to completely stop all other medications before trying marijuana? Or, could medication X and marijuana be used together while titrating down from medication X or others? Thinking there is not a lot of research about this and wondered what the general recommendation might be. I would like to visit friends in Colorado and give the stuff a try but doubt that I would be able to stop any of my current medications just to do a trial.

To: Sojourner: No, you don't have to stop your present medication, you can titrate down while taking marijuana. I first tried marijuana last September when I was visiting friends in Colorado, taking it along with my Mirapex. I could tell when I first tried it that it worked, because I was having symptoms at the time and they went away almost immediately. In January, I got a prescription for Marinol, a synthetic form of marijuana, from my doctor, and took it along with the Mirapex for about 2 weeks, then gradually went off the Mirapex while taking Marinol. During this time I also applied for my medical marijuana card, which took about 7 weeks from the date I first contacted the clinic.

To: badnights: I'm not yet familiar with all of the different Indica formulations, but found the people at the dispensary very helpful and informative. The type I am using is a liquid called CBD Critical Mass .5 gram, which is inhaled with a vapor pen. But I plan to experiment and try some different ones. They gave me one free sample, and I purchased a couple of others for $5.00 each to try. For me, they have all worked. Edibles may take up to 30 minutes to get into your system, while inhaling vapor works almost instantaneously.

Natwest, your initial posting about how helpful the CBD form of medical marijuana was quite interesting to me. In fact, it sparked a discussion with my wife about moving to a legalized state that continues.

It also got me started looking at CBD itself. From what I can tell, it appears that CBD without THC is "legal" in all 50 states - at least that is what the suppliers say. However, I suspect that a better way to state to current CBD situation is that it is not illegal in any state in the US. There also seems to be a bit of confusion about whether the CBD is derived from medical marijuana or industrial hemp. It appears that CBC from MJ is only legal in the MJ legalized states but that the CBD from hemp is the one that is "not illegal". Of course, all of this legal information is derived from the various vendors who have a vested interest in selling their product, so who knows how correct it is.

So what I would appreciate more information about is the specifics of the CBD that seems to be working for you. Is it a very low THC from hemp that would be "legal" or does it contain just a bit of THC, which would have it classified as medical MJ?

PS - one other thing that I learned is that for the hemp type CBD, you have to be careful of where the hemp was grown. CBD grown from industrial hemp in China and India are known to be contaminated with heavy metals and other poisons. Since hemp cannot be legally grown in the US, that means the safest source of the hemp type CBD is Europe and Scandinavia.

Hi Steve, The oil I'm using is 54.8% CBD and 22.9% THC. This company's products are 100% pure cannabis extract, grown organically, here in Oregon, and contain no additives or hemp extracts. All of the products I've come across through state licensed dispensaries are locally grown and are scientifically screened in labs for pesticides and other harmful substances. I would guess other states have similar regulations. Hope this helps!

NatWest... Your initial post and following is most helpful, especially after reading articles in the latest "Nightwalkers" Winter 2015, "Medical Marijuana and WED/RLS" and "My Experience with Medical Marijuana." Having tried ALL FDA approved and off-label Rx unsuccessfully, time to try MM. Several neurologist recommended Opiods. I've declined, owing to their adverse side-effects and potential horrific withdrawal/discontinuance symptoms. It took several years to recover/detox from long-term use of low prescription dose of benzo's for RLS. I'm researching MM hastily, as my RLS symptoms are chronic and severe at times, following total discontinuance of all Rx. I'll continue monitoring your postings for any and all 'specific ' MM info for RLS. Thanks for pioneering the cause and your postings. With the publication of "The RLS Rebel Program: A survival guide for people with RLS" in 2003, by the late Jill Gunzel, she also provided helpful info for fellow sufferers.

Hi RLSBlues, I'm glad some of the information I've posted has been helpful to you. I only wish I had done this sooner, and wish there had been more research available sooner. If you have any questions I'd be happy to provide you with any answers I can. I am so relieved to have found MM. It's like a gigantic burden is now gone, and my brain is free to focus on other things, and that's a very positive feeling!

NatWest, Thanks! I have a physician referral who’s familiar with RLS and charges $250/hr consultation, others are much less, but for only 15 min. What’s been your consult experience with physician evaluation for diagnosis, recommended stain selection and dose, and follow-up if needed? Any suggestions?

You mentioned THC and CBD percentages, were they specific for RLS? Have you tried other percentages? Did the results differ and, is there an optimal or is that an individual selection for best results? Also, if you could elaborate on your over-all experience that would be helpful.

TetraLabs GoldCaps are a pharmaceutical-grade softgel and available in various strengths. These are encapsulated ‘oil like’ medication like tabs, contained in glass bottles. These are guaranteed consistently reliable and pure. Other methods are inhaled, utilizing a vapour pen that you mentioned. How is the cannabidiol you use supplied? Also, which method of consumption achieved best results?

Thank you very much! - Walter