I’ve suffered with severe RLS for many years and decided to try Cannabis Oil as a topical lotion for the first time but it appeared to be making them even worse. Has anyone else experienced a bad result too. I’m quite disappointed because I’ve read so much about how Cannabis Oil helps sufferers. Any suggestions would be great thanks, but I’ve already had every prescription medication known for this condition and the only one that has ever worked is Sifrol (Pramipexole)
RESTLESS LEGS SYNDROME & CANNABIS OIL - Restless Legs Syn...
I've had severe RLS for 35 yrs and have used Pramipexole w/o benefit. Good that it works for you but keep in mind that most meds that work for RLS initially, eventually fail. So have a contingency plan. I've also tried cannabis products such as CBN, CBD and THC. None of them work for me in any dose either alone or together. I've tried rubbing the oil in, taking pills, putting the tincture under my tongue and even used a vaping pen. All I got was a miserable feeling and inability to walk straight. Plenty of side effect yet no benefit and extremely expensive. The only thing that has worked for me is narcotic pain meds and steroids. The latter decrease the severity of symptoms while the former get rid of them entirely. Most docs will not write you a Rx for either but you can always ask. You may need to go into a pain clinic to get this Rx. But even if you do, note that within a couple years your body will be demanding a much higher dose. Eventually the effective dose is higher than the toxic dose. So, once again I repeat, you need to always have at least one contingency plan, preferably more. It has helped me to move from one slightly helpful med to narcotic med and then back again after a predetermined period of time. And give yourself time to wean off slowly while beginning the new med. You might not be able to overlap due to compounding side effects (in case you're doing this without a doctor overseeing and prescribing).
In general, most people would get immediate relief from an effective dose of a Dopamine Agonist ( Pramipexol etc) if they have RLS.
If this doesn't happen, then I would suggest they have some other malady.
For cannabis products to be effective, they need to have some THC in them, to have any effect. There is a huge amount of hype and sales pitch with CBD products. Very little to none with any scientific backing.
All the best.
I'm in the middle of my second try with cannabis products. All of the things I am trying have THC but most are less than 0.5 mg. I have pills taken orally that have 5.27 mg and 26.1 mg CBD. I started with 1/2 tablet and each day added another 1/2. I'm up to two full pills in one dose and I feel the stuff messing with my head but there is NO pain relief. I also have a tincture and I put the drops under my tongue. Each dose has <1 mg THC, 3.34 mg CBN and 3.26 mg CBD. I've tripled the dose with no beneficial or detrimental effect.
Recently met a woman that claims to have severe RLS and she's gone the way most of us have without benefit at any step other than short term benefit with Pramipexole. Eventually she tried cannabis products with CBD oil and nothing was working. A dispensary convinced her to tried using a vape pen. Reluctantly she tried that route. Each day she had to increase the dose and it took several days before she felt any benefit. She reports "having to take 12 hits from the vape pen before any I [she] receives any benefit. She uses a 3:1 CBD-THC blend. I tried the same thing and got to the point where I couldn't get up and walk to the bathroom without falling. So the effect on my head was almost devastating yet I felt no pain relief, not even the slightest relief. And at the point I had also gone past it being economically feasible. Had it worked at that point it would have cost me somewhere between $1250 - $1400 per month.
So it doesn't look good for cannabis products with respect to my pain.
I find what you have to say quite interesting as we appear to have similarities with our RLS, especially with you trial of cannabis. In the past 3 days I’ve been using a cream/oil for shoulder pain that I have and it seems to work quite well for this and some lower back pain too, but the downside to using this is my Restless Legs are playing up more. Because I had a bad night o day 1 I didn’t use it on day 2 and they were somewhat improved, so yesterday, day 3, I used the oil again on the same areas and within a couple of hours my legs were playing up again and kept me awake for most of the night, my arms were too! So I’m giving it one more shot today and if my legs don’t improve, that’s it, I’m not messing with it again. It’s been suggested that opiates might help, but I was prescribed some very strong meds for chronic lower back pain and later neck pain but none of these made any difference to my restless legs, so personally I would say NO to opiates and I doubt that many doctors would prescribe them for RLS anyway, it’s authority medication, GP’s can’t just prescribe opiates, you also have to see a specialist at a pain clinic. Where I live you also can’t just go out and buy Cannabis, it’s still illegal, but recently the law was changed to make Medicinal Cannabis legal, but there’s a lot of red tape involved and it was similar in price to what you mentioned, I believe the price has reduced since, but still very expensive. I’ve had discussions with my GP and he’s of the opinion that it most likely wouldn’t work for my RLS, looks like he’s right!
Hello again intermk
May 2019 I was at the John Hopkins centre for 5 days .
Dr Sara Benjamin said edible are best for RLS as they work differently going via the liver . It lasts for longer in the system so you get the whole nights sleep .
Yes I tried edibles in the USA and illegally from a friend who made me cookies in Australia. Yes it worked but I could sometimes have vertigo the next day as it’s hard to get a static dose .
If I was not on buprenorphine edibles would have to be it for me .
I have tried the edibles with disastrous results. The first time I tried a tiny amount of THC with a larger amount of CBD I got dizzy, started to hallucinate and lost my eyesight for about 30 minutes. The second time around I titrated up to that does with no ill effect but also no pain relief. So kept going until I was at three times the dose that almost killed me. I had a similar experience but less pronounced and still no pain relief. Soooo it's not for me.
As others say, pramipexole can be very effective. AT FIRST.
It can lead to major problems later. If it originally worked for you, as you say, and you're still taking it and it's stopped working then this is no surprise. It might be it's even making it worse!
If ALL other medications fail, it recognised that opiates (not any narcotic) can help. Some RLS experts, I believe now advocate an opiate as the first choice of medication.
Personally, this is not my preference and I have my own reasons for this.
Currently it is difficult to get a prescription for an opiate. The reasons for this are fairly public knowledge, they are very dangerous if abused.
Although I don't normally defend their use for RLS, there are members of this site, I believe who have taken a low dose opiate for years without harm. Perhaps one might respond to you.
It is an option, for some people, with the right precautions, I'd say if all else has failed.
What I would suggest it that you detail what you have already tried and has failed. There may be factors and remedies that you are currently unaware of.
Not all remedies are pharmaceutical. There may be factors making your RLS worse, which if eliminated, can improve your symptoms. This could include other health conditions you may have and/or other medications you're taking.
As regards CBD oil, the current picture on this is that there is no particular formulation of this you can guarantee works. From observing the many posts on here, it seems that "Cannabis" generally helps some people with pain and some with RLS, nothing at all consistent about CBD oil.
Read recently that Citalopram can help restless legs though other meds which are used can cause side effects such as Ropinerole and these can be difficult to come off. However as this is an antidepressant and has side effects and interactions with food it most likely would not be prescribed.
Have you had blood tests for iron vitamin d and calcium deficiency as well as magnesium and potassium? I find magnesium and potassium in foods such as banana helps and tonic water can help muscle twitching or cramp. It's worth a go though many may be sceptical.
Thanks for all your information, my GP organises blood tests quite regularly and everything is good. I’ve also tried Magnesium along with all the others you mentioned, some of which I still take, but nothing really helps.
Citalopram, as all other other SSRI antidepressants is known to make RLS worse. If a doctor were to prescribe Citalopram for RLS I would consider them to be profoundly ignorant.
I don't know where you've read recently that it helps RLS, it does the exact opposite.
You may have misread it.
Hopefully your RLS is OK, but if you ever need a change of medicine do NOT try an SSRI.
Sorry I may not have explained things clearly, I have not had Citaprolam, my GP is highly knowledgeable and will only prescribe drugs that are known to help RLS and on occasion a medication that I may have read up on myself, so to make it clearer, I’ve tried everything that is known to help RLS, but to date the only one that gives me any relief is Pramipexole
You have misunderstood, probably due to unfamiliarity with this forum.
If you look just above the text of my response about Citalopram and just to the right of my avatar you will see it says "in reply to Birmanblue", which means it was my reply to Birmanblue's comment above which starts "Read recently that Citalopram etc ".
Not all comments in your thread are a direct response to you. If other people respond to you, then I or any other member can reply to that person, not you.
This is what happened in this case.
My mention of Citalopram in my earlier response to you was just an example, I hadn't presumed you'd ever taken it.
AS regards to this comment, you will see it says " in reply to Annpaw".
I hope this is clearer.
I'm new to this, but have read a lot of your posts, (thank you)
Mine is severe enough for me!
I'm only using Prampexole 75 mg.
In the late afternoon.
Mine seems to get me in the evening when I'm trying to go to sleep.
I'm out of pills right now, and trying to get bye. Last night I took my sleeping pill clonazepam and was able to sleep right through it. The main point I'm making is if I get to sleep early enough, I seem to make it through the night. I used CBD OIL
for sleep,and that really helped too.
There's different types of CBD OIL, for different things.
Hello Joner and welcome to the forum. Here you can gets lots of support for dealing with your RLS and lots of information. I have found it of great benefit for myself. Thanks to this forum I managed to improve my situation, vis a vis RLS significantly.
There are a couple of things it might help you to know based on what you've written.
Firstly, I believe that you have misquoted the dose of pramipexole you say you're taking. 75mg, if that's correct is 100 times the "official" UK maximum. daily dose of pramipexole recommended for RLS.
I imagine you mean 0.75mg as 75mg, I guess would be a significant overdose.
Secondly, pramipexole, which is a dopamine agonist, is known to be very effective for RLS initially. However, perhaps you need to be forewarned that all dopamine agonists (DAs) used for RLS, pramipexole, ropinirole and rotigotine have serious long term consequences.
The rarest of this is a condition called Impulse Control Disorder. You should find warnings about this in the patient information leaflet.
The other two risks are loss of efficacy and augmentation. These are very common. Unfortunately, these don't seem to be mentioned in the leaflet. Worse still, most doctors don't seem to know about them.
If you look at some of the other posts on this forum, you will read that there are many victimes of augmentation due to a DA.
The longer you take a DA, the more likely you are to suffer augmentation. This might be years, but some people get it after only months.
Another factor is the higher the dose the greater the risk of augmentation.
In additiom, pramipexole is the worst DA you can take for RLS, because it has the highest risk of augmentation.
Some guidelines and recommendations for the treatment of RLS now state that the dose should be kept as low as possible, e.g. 0.125 mg. Some say that even 0.75 mg is too high even for a maximum. Some say that DAs should not be used at all unless other medicines fail.
I would suggest that you read as much as you can about augmentation due to taking a DA. There are things that you can do to avoid it, but in your case that may be too late. I'm sorry.
Certainly if your symptoms worsen, then you will need to seek further advice. If anyone, including a doctor should suggest increasing the dose, do NOT.
I hope you take heed of this, I wpuldn't want anybody to suffer augmentation as I did, for years, out of my own, and my doctors ignorance.
I always warn anyone I read taking pramipexole. This drug is not recommended.
Thanks for reading my posts I hope they may help some people. If I go more than 1 night without Pramipexole I will be driven nuts! I take 0.375 dose and that seems to work quite well, very recently someone suggested I tried Tissue Salts for Insomnia, it’s early days but they seem to help my RLS too even better, only time will tell if it continues to work, they are quite cheap to buy!
I see now that you are still taking pramipexole and if it's still working for you.
Sorry about my misunderstanding, I had interpreted your interest in CBD oil as an alternative to pramipexole and thought perhaps you were having problems with it.
However, as you are still taking it, I hope your doctor has warned you about the risks of taking a DA and how to avoid them.
0.375mg is only half of what joner is taking, but I hope your doctor is aware that if it should start to lose effectiveness then increasing this dose is NOT recommended.
Since you've already noticed that you can't miss a dose without consequences, this demonstrates your dependency on the drug. However, this is not a problem until it loses effectiveness.
No need to apologise, different meds work for different people, it might help somebody
Amitriptyline is commonly used for nerve pain and an SSRI like Citalopram can be used for arthritic pain and sometimes nerve pain. They are also used for fibromyalgia.
However, both tricyclic (amitriptyline) and SSRI antidepressants are known to make RLS worse.
Gabapentin or pregabalin are also used for nerve pain, they're actually more potent than the antidepressants for pain and additionally they are now recommended as the first treatment to be used for RLS, NOT a dopamine agonist.
That's interesting. Have read that Gabapentin has been featured by the BBC as causing neuromuscular problems. Listed on yellowcard scheme UK it has serious side effects and some fatalities. Citalopram is still on file as recommended for restless leg symptoms in diabetic neuropathy. Being highly sensitive to many drugs I would not be able to use them or standard drugs for restless legs. I do appreciate that many people might be helped by these drugs but the people with augmentation seem to have little advice on how to withdraw from them . They also have pain and discomfort coming off the drugs. It is good you are there to up them.
For me Gabapentin is a definite NO, I cannot take it, neither can my daughter!
Alpha 2 delta ligands and dopamine agonists are the only medications recommended for the first line treatment of RLS. As far as I'm aware SSRI antidpfessants have never been recommended for it.
SSRI antidepressants in fact have been listed in many places, including this site as one of the class of medicines that make RLS worse
SSRI s and tricyclic antidepressants, particularly amitriptyline are prescribed for neuropathy it's true. However if the person suffering the neuropathy also has RLS, then it will get worse
Gabapentin does have side effects and consequences. Both the UK MHRA and the US FDA have issued warnings about the alpha 2 delta ligands causing respiratory distress in people suffering previous respiratory health problems and also in people taking opioids or other central nervous system depressants. There have been fatalities.
The FDA did state that like most drugs, the benefits of the drug have to be weighed up against the risks
The best way to deal with augmentation is to wean off and stop taking a dopamine agonist. Most people need a replacement.
The alpha 2 delta ligands, despire their risks are a feasible replacement for a dopamine agonist.
SSRI antidepressants are NOT.
The ligands don't work for some people and can. cause problems for others.
The only other feasible pharmaceutical alternative is an.opiate. However, it is difficult to get a prescription for an appropriate opiate. Opiates have their own issues.
I’m well aware of several opiates which were prescribed to me when I was experiencing chronic back & neck pain. Having undergone major surgery for both, I now do not take any! Interestingly during that period of about 3 years, none of these opiates helped with my RLS, there was little or no difference.
I am one that has been helped with CBD:THC oil orally. I don't take any other form of medication as I don't think cannabis mixes that well with pharmaceutical drugs. I find it excellent to calm my body an help me to sleep. I think dose is very important. My doctor started me on a few drops and I gradually increased by a few drops a week. I eventually found a dose that worked for me. For some people CBD alone may help. I found a mix of CBD/THC worked well. I don't find that I am groggy in the morning and it has the advantage of being very low on the addiction scale. There are some scam oils out there - you need to get from a very reliable source as some oils have very little of the active form of CBD/THC in them.
This is such a shame because as good as this sounds, and good as it is, it's not legal 😡 where live and if I go to jail over THC use, I would have to fight for the medicine for RLS.
My daughter was recently incarcerated and had to fight for almost a week, to get a script for her medicine
Mirtzipine, She had to file a grievance, to get medicine for this dreadful problem and she gets it from her Dr so it has been ongoing,RLS, since she was 10 , she's now 50 and it's worse then ever.
I have it also, but people who have never had it, simply don't want to hear about it, and will let you suffer.
Mine gets so bad, I'm tempted to just throw in the towel.
I'd love to use cannabis, but I'm afraid of jail and so I use the approved stuff which can make it worse, some bring it on,exct.
Drs just simply don't care about the misery of this problem , and when I first asked my Dr for something to help with the RLS in 2006, he didn't know anything about it, what causes it or anything.
I first thought it was withdrawal from pain meds I had stopped using, but that's not the case at all
My family tells me I had what's now called ADHD when I was little, and also when I slept, I would tare up the bed, and no one could sleep with me for kicking and thrashing all night.
I was at a dead run during the day and still running in my sleep
I'm hoping that you have misquoted your dose of pramipexole. 3mg is 4 times the official UK maximum recommended dose for RLS. In addition RLS experts now say that even the current maximum 0.75mg is too high.
Not only that, but you are also taking rotigotine. You are therefore taking 2 dopamine agonists (DAs). I'm not sure why you've been prescribed 2 like this, but it does mean, if 3mg is correct, that you are taking a massive amount of DA.
It doeasn't surprise me that this stops your RLS i.e. FOR NOW.
However, you need to be aware rhat you are at serious risk of suffering the consequences of this huge dose, that is loss of effectiveness leading to augmentation.
I would imagine, for you, that augmentation is almost inevitable. The pramipexole and rotigotine will not just stop relieving your RLS, They will make it worse. Much worse.
Like me, it sounds as if you've found that these DAs are almost a miraculous relief for RLS. However, also, like I wasn't, you haven't been warned about augmentation. I only found out about it after suffering it.
Our only difference is that I never took more than 0.75 mg pramipexole. This was too much!
I strongly suggest you read up as much as you can about augmentation. If you continue on your current doses, it will probably happen to you sooner, rather than later.
DAs aren't really recommended as a first treatment for RLS any more, because they cause augmentation.
I have RLS which interfere with my sleeping! I’ve had all sorts of recommendations as far as medications and others saying that I shouldn’t take anything. (At least that’s what I think they’re saying.) So, my question to you is:what do you do, time-wise, till your RLS stops? How long does yours take? I seem to have mine at any time 24/7. I walk around, sweep my floors, do dishes - anything to put “weight” on my feet”. And, it lasts, at least at night, about 90 min.
If I’m having a really bad night I don’t usually sleep at all, until maybe early morning. I can’t sit or lay down, so I walk around or just stand doing anything and everything, I even go out in the garden in the middle of the night. I spend time doing hobbies, right now I’m building a model train set.
😘 If it stop raining 🌧 I would be walking outside on the nights I have RLS which is most nights. Its aggravating because this all started in 2015 when I was hospitalized with C-Def (Twice because of a stupid “Disease” physician who released me too soon.) I had been very active before which is probably why I didn’t experience RLS. Now, my medication usually kicks in about 0330hrs but on nights when I’m also having problems with my whole body due to MS I’m up all night because I take Benadryl which has the opposite effect in me! 🥺🥺
It seems you're getting conflicting advice.
Ideally you shouldn't take medications.
Firstly, it's best to try all the non pharmaceutical remedies that can help with RLS which includes some "food supplements".
Iron is the main issue with RLS and one of the factors in RLS is Brain Iron Deficiency (BID). This can exist inntge absence of iron deficiency anaemia and is assessed by a ferritin blood test.
50% of RLS sufferers benefit from raising their ferritin to at least 100ug/L. Some RLS experts recommend it should he 300ug/L or more. If you have a ferritin test however, a doctor will say it's "normal" if it's over 12ug/L, so you need to know the number.
Boosting stored iron levels to counteract BID is a key remedy.
Vitamins B12 and D can affect RLS.
Thete are some diets that may be effective for controlling RLS and if you read tgrough all the posts onnthis site you will find them mentioned.
They include diets that restrict some things that might exacerbate RLS and some that include substances that can help.
Ultimately, currently there are many theories of what causes RLS. In many cases there appears to be a genetic propensity of a varying degree. As well as having this propensity, in some cases for RLS to become severe, it requires a trigger. In my case it was Citalopram.
RLS is associated with high levels of the neurotransmitters dopamine and glutamate. More recently low levels of adenosine.
The dopamine aspect of RLS isn't so simple as the main problem is a lackmof or dysfunction of dopamine receptors, NOT a lack of dopamine. Boosting dopamine levels can help, but the resulting high level.of dopamine can cause further receptors to shut down.
Dopamine agonists help to stimulate the receptor sites rather than boost dopamine levels, but higher dopamine is a sude effect. Again higher dopamine levels means further receptirs shut down
As more and more receptors shut down RLS gets worse. This is augmentation.
Dopamine agonists are not a long term solution.
Medicines that lower gluramate levels can be effective for RLS. These are gabapentin or pregabalin. (A2D ligands)
These have the advantage that they don't cause augmentation.
It's true they have side effects. These may be drowsiness, dizziness and stumbling when walking. These can wear off as you get used to the drug. Side effects can also include blurry vision and double vision. Some people gain weight. Some cases of muscle weakness have been reported. This usually hapoens withib days and disappears after stopping the drug.
People with respiratory diseases may suffer respiratory distress caused by the A2Ds. There have been a very small number of fatalities. People taking central nervous system depressants, especially opiate are also at risk.
Reading the side effects is inititially horrifying.
However, whereas it's ideal to avoid drugs for RLS, it's ulimately a matter of chouce and balance.
If your RLS is so severe that it's causing physical, emotional and economic problems then, on balance the benefits of taking a medicine far outweigh the risks.
Chronic insomnia and sleep deprivation were for me the worst aspect of my RLS. RLS coukd keep me awake ALL night and my average was less than 3 hours sleep, This leads to a vicious circle of health problems both emotional and physical.
There reaches a point where, if all else is failing, I'd say, it's not ideal, but it's a necessity to take a medication.
I have been taking medication for RLS now for 11 years. Initially had success, short lived, with pramipexole, a dopamine agonist, but suffered augmentation for years.
I now take gabapentin, originally prescribed for me for nerve pain. I sleep, I don't twitch and I have minor side effects.
Avoiding medications out of anxiety about side effects isn't helpful if RLS is ruining your quality of life.
Try everything else first!
I presently take an iron supplement + B12 (Someone suggested that this helped her husband.), D3, Magnesium, + Effexor (Major Depression), Buspar (Anxiety) + hormone replacement & I think that’s all (Some prescribed other OTC but all under physician care.) I also take an OTC for RLS occasionally when nothing else seems to be working. I don’t have the luxury of time (On my side; I’ll be 69 next month.) to wait for things to work! It’s bad enough having MS which is limiting a few things in my life; my sleep is my escape! My nights of pulling “all- nighters” just don’t work for me anymore!
Great, good that youre taking the iron, B12, D3 and magnesium. I do too.
You don't identify what OTC you're taking and this may be significant. one way or the other.
I appreciate what it's like to be 69! Time isn't necessarily my friend either.
It's not just age that's an issue but your general health when considering taking a medication for RLS. Our "experienced" livers aren't so nimble at handling stuff anymore.
The only medication I currently take is gabapentin for both my RLS and neuropathy. I tolerate it quite well, have only minor side effects and actually feel I am back to where I was 15 years ago. The mirror says differently!
If you do decide to opt for starting an RLS medicine, I strongly suggest you dont let yourself be persuaded by anyone into taking a dopamine agonist (DA), i.e. pramipexole, ropinirole or rotigotine.
Gabapentin or pregabalin are effective alternatives for the DAs and unlike the DAs don't cause augmentation and don't place any stress on your liver.
If you live in the UK, here's a link to the UK national guidelines for the management of RLS. NOTE the warnings about the risks of taking a DA and the suggested alternatives.
IF you don't live in the UK, you will NOT be able to access this web site.
Yeah, I found that out about not being able to access the British app. I already do take ropinirole & for the most part is successful. I also take an OTC called Restful Legs that I sometimes use in between doses. If it all stops working than I will have to go another route because I will not put up with RLS!
I’ve spoken to my GP about the high cost and he says as with most things, these people don’t care about how much others could benefit from it, all they care about is how much money they can make!
Hi , I ve just joined for help because I started taking cannabis oil about 9 days ago for insomnia but straight away my restless legs returned. I haven't been troubled by the legs for 3 years since I went vegan, although I ve suffered all my life, and now its suddenly back. I will have to stop the oil and see.