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.
KySue43
Posts: 4
Joined: Sun Apr 15, 2018 10:53 am

Re Finding doctor who understands and treats RLS

Postby KySue43 » Sun Apr 15, 2018 10:37 pm

How can I find a doctor in my area that understands RLS and knows how to work with it.

legsbestill
Posts: 441
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Medical Marijuana

Postby legsbestill » Sun Apr 15, 2018 11:15 pm

Is your doctor suggesting you go onto requip? That is another dopamine agonist. I would be inclined to discontinue mirapexin, preferably with the help of an opioid (as all the others have advised), and then stay away from dopamine agonists at least for a while - a minimum of 6 months. Going into requip now will only result in augmentation continuing.

Medical marijuana helps some with their RLS but I don’t think it will help much while you are augmented. If you can’t get a doctor to prescribe opioids you could also look at Kratom which I think can be ordered by post in the states.

Rustsmith
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Location: Pueblo, Colorado

Re: Medical Marijuana

Postby Rustsmith » Sun Apr 15, 2018 11:42 pm

KySue, there are several ways to find a doctor who "gets it" with RLS. The easiest is to go to one of the RLS Foundation's Quality Care Clinics, but this will probably require you to travel. The doctors at these clinics are usually involved in RLS research, so they are the experts. They are also in such demand that it can take months to get an appointment. You can find the list of Clinics at https://www.rls.org/treatment/quality-care-centers.

If that doesn't work for you, your next best bet is to get on the phone and start calling doctors in your area. Start with neurologists and sleep doctors. If you can find a neurologist who specializes in movement disorders or who also has a specialty in sleep medicine, there is a very good chance that he/she will know about RLS. When I was last looking, I would ask the receptionist if the doctor treated RLS patients. If the answer was yes, I then asked to speak with a nurse (sometimes I had to explain that I wanted to ask about the doctor's experience with treating augmentation). I would then ask the nurse if the doctor had experience treating RLS patients with augmentation and I also asked if the doctor was willing to prescribe opioids for chronic conditions like RLS. I found that the nurse was generally very honest, sometimes the answer was something like the doctor treats RLS but doesn't have much experience with severe cases and other times the answer was a simple "no" the doctor doesn't have much experience with RLS.

Another resource that is sometimes helpful to pre-screen doctors before calling is to do an Internet search on any candidates that you are considering. Some will have web pages that list the conditions that they treat. That may help you to prioritize your calling list. But, just because the web page indicates that the doctor treats RLS does not mean that he/she knows about augmentation.
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.

KySue43
Posts: 4
Joined: Sun Apr 15, 2018 10:53 am

Re: Medical Marijuana

Postby KySue43 » Mon Apr 16, 2018 10:32 am

RustSmith,
Excellent ideas on how to screen for doctors. There are several universities close to where I live,I think I’ll explore the possibilities of their having some studies. There is a clinic within a three hour drive of home. I plan to check out the insurance aspects of the clinic and try to make an appointment. In The meantime, I’ll pursue local doctors.
By the way, I slept last night, getting up or just coming awake suddenly only 7 times. I feel refreshed, at least compared to my no sleep the night before. I did several things differently. In addition to my “nightly cocktail” of mirapex, progesterone, Cortisol manager, and 200 mg trazadone, which were spaced out appropriately, I had a half of peanut butter, jelly, and cannabis oil at 9:00, a Long hot bath at 9:30, and bed by 10:30 in a separate bedroom from my hubby. So thank you to whoever it was that suggested those ideas. :D

NatWest
Posts: 128
Joined: Wed Jan 06, 2010 7:06 pm

Re: Medical Marijuana

Postby NatWest » Tue Apr 24, 2018 10:07 pm

Hi,

I discovered something recently that I wanted to share with everyone. Some of you may already be aware of this, but I wasn't, and it's made a huge difference in my sleep. I noticed during the last month that my legs and feet were icy cold. They didn't feel cold, but I touched them and was shocked at how cold they were. So, I ordered an electric blanket. All of a sudden, over the last week or so, I am sleeping soundly, and only waking up once or twice. I had been sleep deprived for a little over a year, waking up 6 or 7 times a night, and now I'm sleeping like I did when my rls prescription drugs were still working (Requip and Mirapex). So, now I'm only taking 2 doses of MM per night, one an hour before I go to bed, and one just before I get into bed.

Also, when I went to my medical marijuana doctor appointment last month, the doctor recommended a 50/50 tincture, THC/CBD, and that is also working very well. I keep gummies and a disposable CBD vapor pen by the bed, but I don't need to use them as often as I was before.

So, I just wanted to share this in case it might help someone else. For myself, I feel like a new person, and it's getting better every day as I work myself out of sleep deprivation. So, we'll see how long this works. I'm hoping it will work for a long time, but, with rls, you just never know. If you try it, let me know what you think. I ordered the electric blanket on amazon for $50.

Peggy

Polar Bear
Moderator
Posts: 7101
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Medical Marijuana

Postby Polar Bear » Wed Apr 25, 2018 5:31 pm

I agree that with RLS you just never know, but in the meantime..... how wonderful for you.
To quote you "I feel like a new person" - doesn't that just say it all.
I hope this continues to work for you.
My feet would also be cold and I'm a fan of the hot water bottle though I can't say that it makes a great difference to my sleep pattern.
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

legsbestill
Posts: 441
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Medical Marijuana

Postby legsbestill » Wed Apr 25, 2018 9:29 pm

Since Christmas i have been in a colder bedroom and started using an electric blanket consequently. Although the impact has not been as dramatic as you describe, natwest, (my sleep deprivation was also much milder than yours) I too suspect that it has helped as a sleep aid.

Rustsmith
Moderator
Posts: 3044
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Medical Marijuana

Postby Rustsmith » Thu Apr 26, 2018 2:38 am

My wife got me an electric blanket for Christmas a year ago. I don't turn it on very often since it sits beneath a rather heavy duvet and even the lowest setting to too much. But it really is nice to turn it on before I get into bed so that everything is nice and warm when I get in.

For those occasions where my feet get too cold, I add a pair of socks.

Natwest, do you think that this might be a sign of Raynaud's Syndrome? I have Raynaud's and it requires me to wear gloves when I go out, even when the temperature is in the upper 40's (F). If I am not careful during the winter, the circulation in both my hands and feet starts to cut back, which makes them even colder.
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.

Oozz
Posts: 44
Joined: Wed Oct 11, 2017 8:09 pm

Re: Medical Marijuana

Postby Oozz » Sat Apr 28, 2018 2:01 pm

Just want to share that I’ve been using a new strain on f MMJ and it has been quite effective. It’s called royal medic, it is 1:1 cbd to thc. I use an alcohol base tincture which is 23mg/ml. I take roughly .25ml a night.

It comes in a 15ml bottle with 350 mg and costs about $60.

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

Re: Medical Marijuana

Postby badnights » Thu May 10, 2018 5:03 am

natwest wrote:They didn't feel cold, but I touched them and was shocked at how cold they were. So, I ordered an electric blanket. All of a sudden, over the last week or so, I am sleeping soundly, and only waking up once or twice.
I have an electric pad about 2x1 ft maybe even smaller. Even in the summer sometimes I use it. I have another one on my couch where I often try to doze off. Having that heat on my feet will often make the sleep happen. It just sends me into a most profound relaxation. (Not always.) Like slipping into a very hot tub; aaahhhhh - - all the yuk in the legs goes away. It's nice to have a small pad that I can kick out of the way if it gets too warm.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


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