Must be a couple of years since I posted on here - at that time I'd progressed from unsatisfactory Ropinirole to the then-new Neupro 3mg transdermal patch, at which point I thought I'd cracked it. However, over the last few weeks the patches seem to have lost their efficacy - got no sleep at all last night. My thoughts drifted to the well-known benefits of 'medical cannabis' in the treatment of some neuro-muscular disorders, but which is off-limits in the UK. I've done some digging around on-line this afternoon and came across a product known as CBD Oil, or 'medical marijuana', which is cannabis with the high-inducing THC removed and therefore entirely legal. There are many scientific reports on-line that suggest that this compound is effective in the treatment of pain associated with RLS, and any number of vendors. It can be either 'vaped' in an e-ciggie, or a few drops placed under the tongue before bedtime. It's a bit pricey, but what price a good night's sleep? Has anyone else out there looked into this, or maybe even tried it?
Big difference in price and both made from different plants as you can read on the cbdbrothers site.
To be honest I have used cannabis in the past including getting a strain that was bred to be very high in CBD. I found the high CBD one to be less effective than high THC.
Proper cannabis has, among others CBG CBC CBL CBV and THCV. Many claim it is the interaction with all the cannabinoids that allows it to work so well.
Here is a nice image of the difereing parts and what they do:
The CBD stuff is useless. The THC ones are the ones that help RLS. CBD has the THC removed, and makes it fairly useless for RLS. I recommend the high THC variety. I live in a medical MJ state in the US also.
I have to respond here. I have severe RLS and currently taking carbidopa/levodopa. I used to take 20mg but reduced it to 10 mg now that I taking CBD oil without THC for 5 months now. I am ready to go off my meds because of It. I am finally sleeping again. It has helped my 83 year old mom tremendously with her RLS, too.
Swiss Relief, 500 mg at night. And I totally disagree with those saying the CBD oil without THC is useless. It has been a lifesaver for me, my mom and my sister.
I have sever RLS and take 300 mg every 3 hrs to alleviate my symptoms which is a huge undeniable urge to move or shake my legs which most often results in a huge jerking reflex action.So do you suffer from the same type of symptom and does this CBD relieve or eliminate the urge to move or get up and walk or shake your leg?How long does it take before the drug begins to work and the duration of relief of symptoms?Thanks for your input
My legs also twist and jerk to the point where I would scream. But, since I’ve been taking CBD oil it has made a big difference. I’m retired and have health issues so I’m not that mobile. If I take a long walk or do lots of housework; it helps. For me, CBD takes effect between 10-20 minutes but everyone is different. And, it just depends on the person but mine last 4-8 hours.
I went thru all the expense of getting qualified for medical marijuana in Arizona U.S.A. and they have deliberately made it expensive, but after two months I found no additional or even marginal benefit from its use. I quit using it but nobody in the organized chain who collected all that money ever gave any back. In AZ it is politician and their lackies who benefit from medical marijuana, not patients. Good luck, I hope it helps.
From my experience different strains were good for different things - Strawberry Cough worked wonders on my RLS Sensi Star was great for pain. A high CBD strain - bred to be very high in CBD did nothing.
For cannabis its trial and errort as far as I can see.
well through Amazon, as payment was handier, after talking with Andrew there who was very helpful. AS soon as it arrives I will be using it and reporting on here.
windwalker, like raffs said, there are different strains of pot for different things. You may have not gotten the right one for YOU. I would not give up on it yet!
Hi, I am new on site and on patches 3mg plus meripexin and am still walking floor, thank you
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Maybe its time to re-evaluate the drugs - they obviously aren't working.
If the RLS has gotten worse you are likely experiencing augmentation and need to come off them.
The 3mg is as high as you should go with RLS as far as I'm aware then you have the blasted Mirapexin added in so likely taking more than you should.
If you take a quick look on here you will find numerous posts with lists of drugs people have tried and may get some ideas. Some info here:
Thewingco- I've been taking CBD oil! And it worked amazing wonders. I had been taking Mirapex for 15 years to control my RLS. After 4 failed attempts of weening-off, by way of heavy narcotics, I found the CBD oil in an edible cookie form shop.rxcbd.co/
They also make a body oil, which I haven't tried but would love to hear if it works for you.
I should also note that it took about 3 weeks to build up in my system before I had consistent results. But the anxiety I felt at night leading up to 'trying' to fall asleep was relieved immediately.
No, I haven't. Though Recently Ive taken stronger doses in capsule form. That worked well at the beginning. From my experience, it seems I needed to build up the CBD in my system before I was able to get sleep. Now, I prefer the cookies because I can control (limit or increase) the amount of medicine simply by breaking off the amount I need piece by piece. .....and the gingersnaps taste so good
Ive just ordered cbd oil and feel very excited. Should I stop mirapex immediately or do it slowly. How many drops of the oill should I take. Hope it works
Definitely take a slow approach to stopping mirapexin. I can't remember what dose you are on but it is not a good idea to stop abruptly. I would expect that you will have bad symptoms as you decrease your dose of mirapexin. It is unlikely (though not impossible I suppose) that cbd oil will be sufficient to help those symptoms. Typically an opioid such as tramadol is required.
I take 0.18mg every evening but its starting to be not enough. I sometimes take half the amount in the morning. Thanks for your advise. Im not sure but I think I take a low dose
Yes - it’s a low dose - especially by comparison with what some poor souls have ended up on. Even though it’s low, I would not increase it at all if I were in your shoes. Rather, I think you are right to consider reducing and even eliminating it - at least for a short stints to prolong its effehctive life.
I’m not sure if 0.18 is a single tablet - if so I’d cut it in half for 5-7 days, then a quarter and then eliminate.
As I already said, I suspect you’d need something quite strong to manage your symptoms while withdrawing from and being off mirapexin. You could consider asking your GO for a prescription for tramadol. This would also help with break-through symptoms if you go back into mirapexin so that you can keep your dose low.
If you haven’t already, you should have a serum ferritin check done to make sure iron levels are high (ideally over 100).
As an alternative to tramadol you could order kratom which is very effective against rls. Hopefully you will be one of those for whom cbd is very helpful but it is useful to have back up plans. Good luck 🍀
Thanks so much. I feel bad for some of the people whom I read about. Im glad its a low dose. I take feroglobin and magnesium and Im scared it will get worse. Ive ordered CBD oil and I will do as you say and cut the tablet in half. Hope you are feeling ok
I really hope the cbd oil helps. The alternative to tramadol is oxycodone/oxycontin. There is a specific formulation of it called targinact which has been approved in the EU specifically for rls. You wouldn't want to take it for too long or it becomes hard to discontinue but it would help to get you through if your symptoms get bad (temporarily) as you reduce/eliminate the pramipexole. You would need your doctor to give you a prescription for it however.
A final option to consider if kratom which you can order from Holland and doesn't need a prescription. It is not legal in some countries but it is very effective against rls. I find it fantastic and am very angry (and defiant) that it is illegal where I live.
I started the cbd oil and halved the mirapex. I also took lonarid which is 400mg paracetamol and 10mg codeine and also a lexotanil before I went to bed. I woke up several times during the night and walked around as my legs felt awful but I slept again. Im scared to stop the mirapex yet. How long should I try with just the half. Its not easy
It’s really hard coming off mirapexin. Your legs will get really bad and typically you will get very little sleep at all for a while when you reduce and eliminate. Ideally you should do this under the supervision of your doctor. Unfortunately, very few doctors know much about this area. Please understand that I am not advising you - I am not a doctor - I am only passing on my experiences and what I know about rls.
If I were you I would take the half pill for about a week before reducing to a quarter for another week but you have to expect that your legs will get very bad for a while, even after you eliminate the mirapexin. Normally only opioids will help during the temporary worsening of the legs.
Hi, sorry to keep asking you but here the doctor doesnt give me any information. When I manage to come off mirapex will I have to take cbd oil always as it is quite expensive or is there an alternative that you know about
Exactly the same at bedtime. I think the oil simply relaxes me, so that I’m less concerned about sleep, then I seem to sleep easier.
So my oil came today. I've had 5 drops sublingual held for three mins, (which wasn't overly pleasant). In about 20 minutes I should be experiencing the effects.
It might take a few days before you really notice a big difference, although some people do get immediate relief. I find the oral spray less unpleasant to take than the drops, although you do get used to it. The most important thing is to remember to keep it in your mouth & not to swallow for a couple of minutes, otherwise it doesn’t absorb correctly.
Hi Rosieme, my experiment lasted a couple of weeks and FOR ME, I had effects no better than placebo unfortunately. Mind you there are many getting great benefit from this one (of 400+) cannabinoid. I prefer to get my cannabinoids all at once
Been sat at the computer for a while which normally results in an acute pain in the base of my neck. SO far SO good. Can't say I notice any side effects as in altered perception that comes with cannabis use so again all looking good.
Hopefully it will continue to work for a while. I still have other aches and pains but this early on it does seem to be having some effect on the pain.
OK four hours on and after a bit of a potter in the garden and sitting at the PC there definitely is less pain in my neck/shoulders. Now it may be placebo as I am desperate for relief but I'll take that at the moment.
IF it is like many say and the CBD needs to build I can only hope that things improve more.
I have not noticed anything other than the pain relief in my neck/shoulders I still have aches elsewhere, (maybe not as bad, maybe). I haven't noticed any psychoactive effects - I am really pissed off with my Dr this weather and that hasn't eased so hopefully it will just impact on the pain.
Many thanks for all of your responses. Seems to be the same old story . . . that what one medication works for one sufferer doesn't necessarily apply for another. What a sh%$/>*"* this affliction is! Since my original post I've had relatively good nights' sleep - it's odd that severe attacks seem to come in batches: maybe 7-10 nights of really stressful episodes, followed by 7-10 days symptom-free. Anyone else have this on/off experience?
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Yes, I have this on/off issue. I can have as much as a week of no or not much RLS and then 5-7 days of hell. It's even have it in my back, shoulders, pelvis now. I take taurine, chelated magnesium, GABA sublingual at night. Have found that the herb jamaican Dogwood helps with muscle spasms. It seems whenever I find something that really helps, it doesn't last for long. I was using Crystal Star Muscle Relaxer capsules and that really helped, but it also contains kava, valerian, and other herbs for hormones which was affecting me during the day. I had bottle of CibDex Raw spray which really helps with anxiety and calms the mind; did nothing for the RLS. Oh, if you can find St. John's Wort OIL and rub on your legs that also really helps. When I have the bad nights I have to take more of everything. the only thing I've found that really consistently works is a product called Etherium Black. I buy the powder and put it into capsules myself because this saves some money. It really, really helps along with the mag, taurine and GABA. It's a very interesting product. It counteracts negative energies/EMF's and absorbs toxins produced by the body in reaction to EMF's. I've always felt that RLS is greatly aggravated by EMF's and even chemtrails (I know this is a very touchy and controversial topic for many, but not hard for me to grasp because I was groomed for the Monarch Mind Control program as a child with resulting PTSD later in life which I overcame but ended with valium addiction which of course leads to really bad RLS). Oh, I am also gluten free and mostly grain free. If I eat any wheat products the RLS is off the charts along with full body pain. Here's the link for Etherium Black: harmonicinnerprizes.com Go to the monotomic minerals section.
YES! That’s how it is for me. Right now been walking for 4 plus hours! Take Ropinirole ER 6mg and Ropinirole 1 mg as a supplement as needed up to 2 mg daily. Also300mg gabapentin 3xday. Thinking of trying CBD oil but not sure of dosage.
I would say you are augmenting on all that dopamine, you are taking waaaaay to much. Look at the pinned post which tells you all about Augmentation. The more of the Ropinerole you take the worse your RLS will be.
Hi, I,ve had RLS for almost 30 years. I've had to progress from mild to serious medications to be able to sleep. A friend visited this year with some eatables. It was a breakfast cereal. 😀 I have to take my medication right on time or I get symptoms. This night I was late to take my Meds. He offered these eatables and while I was already having symptoms and unable lay down to watch a movie I ate some of this cereal. I walked around the room watching the movie and 20 minutes the RLS was gone. The relief lasted about 3hours. I took my Meds anyway that night. The next eve I ate the cereal and I was comfortable that night and took the RLS med late
anyway. Why don't I continue? Because I was spaced out the next day from the "cereal". Let me know what happens.
Yes. CBD works great for me. Research it. Get it from a good source. I have found the at least 15mg of actual CBD concentrated oil relieves my symptoms within minutes. CBDPlus is an excellent brand.
Since my last post about CBD oil, it stopped being effective for me. When I first started using it I was impressed. As time passed, however, it became less and less effective. I no longer use it. I’m so sorry!
I was suffering from RLS all day so badly that I could not sit down in an armchair to rest. I was taking 2 x Pramipexole at night which caused a reaction bringing on RLS before the drug actually did any good. I tried cannabis oil and found immediate relief from my daytime RLS and I have been able to halve my night time dose. I also get no reaction when I take Pamipexole. Wonderful relief!
CBD oil is available from Holland & Barrett £19.99 for 10ml, or sometimes on offer. A bottle lasts me 3-4 weeks.
i just posted this in another part of the site, but I will never again ingest this stuff. My goal is to ease RLS, sleep being the goal. Ingesting the stuff takes a long time to take effect and IS psycho-active. Topically worked for me last night. I don't know why I didn't think of this before. I use a CBD gel on my feet.
I take Ropinirole 2mg ER tablets and it usually helps when I go to bed. However, I have been experiencing for quite some time what I believe to be rebound RL in the evening when I sit down to read and relax. I claim that diagnosis (rebound RL) from reading different articles on the web.
I began using a CBD oil that I purchased from a health food store. Mainly because a gentleman I encountered in the same store told me since he and his wife began using CBD oil, they are pain free from their arthritis. I purchased some high quality oil. ($74) Beginning the first evening I took it, my rebound restlessness is no longer there. It may be coincidence, but I count it an added bonus, a miracle really as those of you that suffer from RLS surely know. I have used it a week now with still no symptoms. I still take my ROPINIROLE ER, but I am excited to be able to enjoy my relaxation. I am a believer?!!! I can't wait to travel to see how my legs do. It is usually torture to travel.
I use CBD oil, while I wouldn’t say that it’s been a wonder drug for my problems, it certainly helps. For me, using it as a spray orally is best, although drops are ok but taste disgusting. For my neuropathic pain, I wanted to try the foot balm but it was out of my price range, so I made my own. I looked up the balm ingredients, which were mainly coconut oil & BPD oil, so I made my own & also added a few drops of lavender, which certainly soothes & eases my difficulties. The worst part is the price. I found a company ‘Love Oil’ which offer good quality oil in different strengths, also in different forms. I get it online & so far they’ve not dissapointed
Hi Ive joined good forum called cbdusersuk they are very helpful, and will ask you,how they can help you, I've been taking it for a few months. Ive found its helped me,takes awhile to work,you have to try it for yourself. hope this helps.
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I live in a medical MJ state in the US also.
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My experience with medically prescribed vaping for RLS
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