Desperate for sleep. Cannabis? - Restless Legs Syn...

Restless Legs Syndrome
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Desperate for sleep. Cannabis?

Jumpey
Jumpey
74 Replies

Ropinerole and Gabapentin haven't worked for me. My body has become tolerant of Codeine and Tramadol for the time being so I need to have a long holiday from them to reset my receptors. The torture of extreme sleep deprivation is driving me to consider illegal cannabis as an edible. If anyone on here uses this could you recommend how much? And I know the difficulties with this because of the lack of standardisation. Please message me in private if prefered. Any suggestions would be gratefully received. My mental health will be eternally grateful.x

74 Replies
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involuntarydancer

I use cannabis (which I grow myself - unlawfully) made into an edible specifically for sleep. It doesn't help my rls to any appreciable extent so if the rls is untreated I do have to cope with a stoned feeling and some lack of balance while awake and pacing and it's worth being aware of this. If you are unused to cannabis you would do well to familiarise yourself with the sensations by building up - perhaps take some during the day. Even though it doesn't help with physical symptoms, I do sometimes wonder if cannabis slightly takes the edge off the misery of rls because of its numbing effect. Also, it is worth being aware that Dr. Buchfuhrer says that cannabis works much better for rls if it is smoked than taken as an edible. I find it very difficult to smoke it - I bought a very expensive vaporiser but can't get it to work well so I can't really comment on this.

In your shoes I would buy a small quantity to start with (there is a much lower prospect of being prosecuted if you are apprehended with a small quantity also) and make it up into a small amount of cannabutter or whatever the equivalent is using coconut oil instead of butter. You will find videos online giving guidance on the ratios but even if you follow them slavishly with a very accurate scales a lot (in terms of the strength of the eventual product) will turn on the strain you buy, the time when the bud was harvested, the growing conditions etc - all of which probably be unknown to you.

As you have already alluded to, getting the dose right can be hit and miss therefore. As I age I find that all drugs take longer to take effect. The given wisdom is that it takes about an hour for edible cannabis to take effect and the effects last for about 4 hours. I think with me it is more like 2 hours before it takes full effect by which time I am often asleep (hooray!) so I'm not always able to assess how well I am judging the dose. I suspect that even within one batch, the strength varies from piece to piece and certainly it is not standard in terms of strength from one batch to the next. I always proceed with caution when I am starting on a new batch. However, my cousin who is a consultant in a busy emergency department in southern california tells me that he has never seen a death from cannabis overdose, in spite of numerous presentations with it. The worst you get is a bad experience, a sense of paranoia and nausea.

As to making it into an edible this is a protracted process - although not difficult. There are numerous videos online but it is important not to leave out the decarboxylation stage so beware of any instructions that don't include this. Once I have made mine into canna-coconut-oil I let it harden then I cut it into small pieces (about half the size of a penny) which I freeze. I then use it on a piece by piece basis. In your shoes, I would probably start with a piece about a quarter of a penny and about as thick as a penny.

This is a long-winded way of saying that I don't see any way of learning what dose you require without trial and error. Best of luck. I would be interested to hear how you get on. Feel free to pm me if you wish.

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Jumpey

Thanks so much ID for your very thoughtful response. It's left me wondering whether it's that helpful for RLS and worth all the effort . Interesting about Dr. B's view. I worry about the effect on my lungs of smoking it. A lot to think about before I decide whether to go ahead for sure. Wishing you endless restful nights! xxxx

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involuntarydancer

It IS a bit of a hassle but it works well for some people so I would say probably worth a try unless very difficult to source.

Have you tried drinking a cup of coffee when symptoms strike? Very few non-pharmaceutical options other than iron work for me - but that works fairly regularly (not every time but enough ...).

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Jumpey

Interesting suggestion about the coffee. I will give it a try. Have just sourced some THC oil online which I may give a go.xx

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Whippetmama
Whippetmama
in reply to Jumpey

The THC oil is what has been effective for me. The oil I take is 33% THC. When I feel the RLS coming on, I take Tramadol and the oil. I can honestly say that my RLS is under control. It has been a miracle for me. I do smoke marijuana recreationally (child of the 60's) and it does have some effect, but no where nearly as effective as the oil.

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Jumpey
Jumpey
in reply to Whippetmama

Whippetmama you have given me hope with this reply. Thanks so much. Can I ask where you get your oil? I'm a bit scared about being sold toxic stuff.x

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Whippetmama
Whippetmama
in reply to Jumpey

I live in Mexico so sorry, can't be of much help to you (unless you live in Mexico, too)

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Jumpey
Jumpey
in reply to Whippetmama

No I live in the Uk. Do you get your supply online though?x

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Whippetmama
Whippetmama
in reply to Jumpey

No

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Jumpey
Jumpey
in reply to Whippetmama

ok. So of no help to me in the Uk.x

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Hodges245
Hodges245
in reply to Jumpey

I suffer with terrible rsl I use lovehemp cbd oil from Holland and Barrett or you can buy on line it is helping me good luck

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Jumpey
Jumpey
in reply to Hodges245

Hi. Thanks for that. Glad it helps you. CBD oil doesn't work for me.x

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ke34715
ke34715
in reply to Jumpey

I also drink coffee if I wake up too early because of RLS symptoms and want/need to sleep more. By the end of the first cup, I'm already drowsing off with symptoms at bay, It's worth a shot!

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Jumpey
Jumpey
in reply to ke34715

Brilliant. Will give it a go.x

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Abookwriter2

I want to know what kind of iron supplements people with RLS use? Pending iron level test coming back by Wednesday so may get a ‘pharmaceutical iron dosing’ but like to know.

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Memmy

Hi, Ive been trying coffe and its amazing how well it works. I make an espresso so its a quick fix. Ive also found out through someone who worked with research into meds and he told me interestingly that smaller doses of codeine seem to be more effective for some ailments. I had bought the strongest over the counter codeine and couldnt understand why it wasnt effective. I then tried the 8mg one and it seems to work. So if I have funny legs in the night I have a coffee and codeineand sleep almost immediately. I do take a very small dose of mirapexin every day

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Lapsedrunner
Lapsedrunner
in reply to Memmy

Both of those things work for me too Memmy! An even quicker fix is to get some caffeine tablets (Proplus in UK) I use 8/500 cododamol for codeine

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Memmy
Memmy
in reply to Lapsedrunner

Hi, so do you think its the caffeine and not the coffee thats effective.

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Lapsedrunner
Lapsedrunner
in reply to Memmy

Yes!

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involuntarydancer

I continue to find a shot of caffeine can be helpful. That's very interesting about the codeine. I will try a smaller dose. Like you, I find that larger doses can be disappointingly ineffective. The body's response to the drugs that work on the dopamine receptors seems to be quite contrary!

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Memmy

Yes its really strange and I was thrilled when it worked for me. Now the stronger codeine gets cut in half. The man who told me worked into drug research so its ob oiusly proved but I still find it odd. Let me know your experience

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jimmcar
jimmcar
in reply to Jumpey

The important thing to take away from all the different opinions is that you have to try it for yourself.

I hesitate to contradict the very knowledgeable Dr. Buchfuhrer but I have read (and it is my experience) that edibles interact with the liver in a very different way than smoking. And because of the way it interacts with the liver, the edibles stay in your system for much longer than smoking. In my experience, up to 8 hours. Whereas smoking is good for about 4, in my experience.

Also, the use of edibles is very helpful for my physical symptoms. I use them together with levadopa or, sometimes, kratom. I've been getting my best sleep in years with those combinations.

But again, your results may quite well be different.

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Jumpey
Jumpey
in reply to jimmcar

Cheers for your response. Glad you are helped.What edibles do you use?x

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jimmcar
jimmcar
in reply to Jumpey

Just about anything! When I go into one of California's new cannabis shops, I really feel like a kid in a candy shop. I load up on all kinds of stuff since i return to Costa Rica where I live 4-6 months at a time.

I buy cookies, gummy bears, chocolate bars... I get them in Indica and Sativa. I also have bought the flowers and make my own cannabis butter, which is very easy to sneak across borders when travelling.

I have done a lot of experimenting to see if there much difference between Sativa and Indica. So far, for me, they both work equally well.

For a new person, I would definitely recommend using Indica because that is supposed to be better for pain relief and sleep. Perhaps that is how it effects most people - but for me, they both work. Edibles better than smoking...

I feel sorry for people who live where it is still illegal. Even in Costa Rica, which is a conservative country, they are getting closer and closer to legalization.

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Jumpey
Jumpey
in reply to jimmcar

I am so pleased for you.Also envious that you have the choice! X

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raffs

Hi Involuntarydancer, what vape do you use? I have a volcano which is a static (for want of a better word) and very easy to use apart from the fact that some clumsy oaf broke the stem on it putting it away :( I also have a little portable one, the name escapes me at the moment, easy enough to use but hard to get a decent draw on.

If I don't smoke a joint I use a water pipe, it definitely makes the smoke cooler and easier to take - just don't get glass if you are a clumsy oaf like some people I know :) You can buy some very complicated cooling bongs/pipes that makes the smoke easier (although some of these can be very expensive).

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involuntarydancer

Hi Raffs, I too have teenagers in the house but since my traumatic dopamine agonist withdrawal in 2016, they regard any drugs for my rls as justified on medicinal grounds and are completely supportive. I recently had to confiscate a bong from my youngest and found that rather than raid my extensive cache of cannabis he had gone and bought his own. I wasn’t sure whether to laugh or cry. He is too young to be taking drugs still less buying them but it was kind of loyal that he refrained from taking mine. Made him research and write an essay on the impact of cannabis on the juvenile brain as punishment and it seems to have had desired effect - either that or he’s got better at concealing his experimentation.

In meantime, with barefaced double standards, I have been experimenting with his bong but can’t really get the hang of it. The vaporizer I got was a pax II. It was highly recommended but it doesn’t seem to heat up properly now and lately it is refusing to charge also. It is small and portable - so much so that I accidentally took it on a weekend trip to Hungary a while ago only realizing when I unpacked my toilet bag in the hotel - it was full of cannabis as well.

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raffs

That Pax II is very like my Air Vape X that is the one I was struggling with also. It isn't a patch on the volcano but I still think you can't beat the water pipe for speed of access and titrating dose.

My kids have suggested several times that I use cannabis and my youngest has seen my water pipe but isn't 100% sure. I know they would have no bother with it but they would tell their friends who'd tell their friends and so on until either the boys in green or the ones with the woolly faces land at the house!

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raffs

Hi Jumpy. I use cannabis from a known source so I am sure of what I am getting - too many teens about my gaff to be growing it like involuntarydancer but when the kids are up and away, if I am not able to live my dream by going to live in Spain (and grow cannabis there), I will grow it at home.

I find I get best effects from smoking it despite having bought good vaporisers and made a variety of oils and edibles. I find I can get the right amount in the fastest way without getting way too much. If my RLS is way out of control it wont help other than take the edge of the annoyance. If you have painful RLS it is good for that.

I found when I started using it I was too stoned to sleep - I just enjoyed the high lying in bed eating chocolate and ice cream while watching Family Guy. Unfortunately as a regular smoker I get no longer get that stoned feeling - I can't take enough to feel high, at most I will get sleepy.

Research well - Indica are a heaver stone and better for sleep, Sativa are more stimulating and best taken during the day. If you take too much and start to get anxious , (which is very easy), I find eating something, particularly something sweet, helps bring the anxiety down.

Two final points:

1 - try and know who you are getting from and if possible get from someone who grows it themselves - it is more likely they will take care with it and flush it properly and there for have less contaminants.

2 - remember it is illegal and despite lessening anti cannabis views it still can carry a heft penalty in some areas.

Vote Boris - he will make sure you are arrested for using cannabis to help medicate yourself while he has two nostrils full of cocaine.

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Parminter
Parminter
in reply to raffs

Does he really?

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raffs
raffs
in reply to Parminter

He has admitted to cocaine use, he belongs to a party that despite having a minister married to one of the largest producers of cannabis for medicinal use in Europe STILL F**KING MAINTAIN CANNABIS HAS NO MEDICAL VALUE and keep it illegal!!!

Vote Tory - We need to see hypocrisy in human form.

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Parminter
Parminter
in reply to raffs

Somebody is making a lot of money, or protecting their interests, by not legalizing.

What if patients actually made their own medicine? Can't have that.

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Whippetmama

The US FDA has approved a synthetic form of THC. Yet, the real (and natural) stuff remains illegal. Why? Well, you can't patent Mother Nature. so no money to be made. Big pharma wins again.

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Jumpey
Jumpey
in reply to Whippetmama

Yep. Money is the root of most evil.x

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raffs
raffs
in reply to Parminter

Apparently you can make your own bottle of Sativex for around 5 USD, GW Pharma sell for 124.95USD - never mind using cannabis being illegal those profiteering from its illegality are immoral.

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Jumpey
Jumpey
in reply to raffs

Capitalism in action! Keep the masses down whilst making a fortune off them. x

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Jumpey
Jumpey
in reply to raffs

Thanks so much Raffs. Your feedback is invaluable. I'm a novice here so any help is wonderful. I'm scared of damaging my lungs by smoking or vaping. I've sourced some thc oil and /or capsules online but they sell in "bulk". £250 being the smallest amount I can purchase. I'm reluctant to spend this amount up front in case it's a rip-off. Dimemmas, dilemmas!

With regards Boris I would dearly love to stick a variety of sharp objects up his nose!!!x

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raffs
raffs
in reply to Jumpey

Yeah jumpy it is a minefield made worse by greedy and cowardly politicians.

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Jumpey
Jumpey
in reply to raffs

The establishment, big business, pharma companies have us all in a strangle-hold. Come the revolution!!xx

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raffs
raffs
in reply to Jumpey

I will be the one the one manning the rope!

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LiflongRLS

Canibus doesn't help with RLS

Believe me if it did i wouldn't have it.

The only thing I've found over the 50 + yrs I've

had it ; is zanex to quite the brain so you don't lay there waiting for it to creep on. There it is.

Get to sleep fast. You might still kick your partner. But you won't know it.

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Jumpey
Jumpey
in reply to LiflongRLS

Thanks for your reply. Glad something works for you.xx

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raffs
raffs
in reply to LiflongRLS

If the canibus doesn't work you could always try the canitrain :) (Sorry - I'm in a more childish mood than normal, well what passes for my normal anyway).

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jimmcar
jimmcar
in reply to LiflongRLS

I sympathize with you, LiflongRLS. But I don't think I'm going out on a limb by saying that absolute, blanket statement like "Cannabis doesn't help RLS," just are not accurate. Everybody is different. I believe that it doesn't work for you. But it most definitely works for me! And a few other RLS sufferers that I know.

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Parminter

Various edibles did not help me, but it was great fun to make them. The best was a cookie made with three cheeses that were like the best cheeses straws I have ever tasted. The difficulty was to stop eating them. Thirty-five minutes later you realize that cookies should not taste too good. Life experience.

The general word is that you must smoke, and that if you have the correct strain you may get a few hours of peace, but not night-long.

You do know that Tramadol can cause augmentation, alone among all the opioids?

Can you ask your doctor to give you a stronger opioid, or is that also off the list of the cocaine-snorting boffs that Raffs mentions?

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Jumpey
Jumpey
in reply to Parminter

Hiya. I haven't augmented on Tramadol. I was very careful to take a low dose 5 days a week and rotate monthly with codeine.

Thanks for the feedback on the edibles. They sound very delicious but crap for the legs.

I would prefer not to take a stronger opioid if I can avoid it.I have found that if I can come off them for a few months they start to work again. However in desperation I won't rule that out if my gp would agree.

I'm not looking for 100% relief. I think this is unrealistic. I can manage on 4 hours. Zero sleep night after night is the killer for me. Body, mind and soul destroying as you well know.x

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Barbee44

I got a license for medical marijuana and I broke out in hives from it. Xanax is the only thing that works for me, and now my body wants a larger dose because after 3 months, it's back.

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Jumpey
Jumpey
in reply to Barbee44

Thanks Barbee. Sounds like a similar situation with myself and the opioids. Tolerance stops them working which is why I'm looking for for an alternative to provide a drug holiday so I can return to them. x

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Dogdoo

I smoke the flower before bed. Occasionally edibles but i like those better for day time.

I also use thc oil that comes in a cartridge that you attach to a vaporizing pen. It is much smoother than the flower and more potent. Also there is no smell and you can get them in favors like grape etc.

I live in the U.S. in a state with recreational cannabis so its easy to obtain.

I also take Kratom twice daily. If i miss a night dose, my rls is unbearable.

I take gabapentin as well.

This combo works very well most nights.

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Jumpey
Jumpey
in reply to Dogdoo

Thanks for your advice. Glad you live somewhere where you can use and experiment with various substances. I don't, sadly, so was hoping for a recommendation for an online reputable supplier. Don't want to smoke anything to protect my lungs. Have tried Kratom which was good for RLS but gave me horrible pain in my Oesophegus. xx

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raffs
raffs
in reply to Dogdoo

Jesus man, the whole bed..really - lupins and all?

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Alison7

Hi, I agree with ID and a tip I picked up from this site some months ago, that coffee has a helpful effect. It doesn’t seem to prevent but I’m convinced it switches off the horrible sensation for a while when it occurs & often allows me to lie still enough to grab some sleep for an hour or so, sometimes a bit more. There is apparently a biochemical reason too why this should be.

The other thing exciting me just now is a post from this week about the beneficial effect of hrt. I’m still pondering how to get my GP to let me try it.

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Jumpey

Mmm. More coffee advice. Will defo give it a go. Please post re. HRT if you experiment with it.x

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Sara_2611

Hi. Jumpey

I wouldn't use cannabis illegally at any time.The only trouble you would be in is with the police because its an illegal drug

Just an observation on my part here You never know who may be looking at this site +noticing that people who want to use it illegally. or make a confession they are using it illegally & may call the police or have the same or similar issues who are employed by the police +make a report to their colleagues +show these messages to them as evidence

Maybe speak to your doctor to see if he/she can recommend you any medication you haven't had that maybe strong +help you sleep

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Madlegs1
Madlegs1
in reply to Sara_2611

This site is anonymous.

And , anyway, I live in Southern Antarctica.

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Sara_2611
Sara_2611
in reply to Madlegs1

Okey coke. Yes of course Sorry if I was tactless. Understand -

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Jumpey
Jumpey
in reply to Sara_2611

For sure care needs to be taken. It's also a matter of trust.x

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Sara_2611
Sara_2611
in reply to Jumpey

I guess so. Apologies

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Jumpey
Jumpey
in reply to Sara_2611

No apology necessary. You were trying to be helpful and you have a point.x

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Sara_2611
Sara_2611
in reply to Jumpey

Ok no probs I use Balneum Cream -which is really only for skin conditions but when I had RLS very badly when I lived away from home I went to my doctor & he prescribed it regularly for me & its done my legs the power of good

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madman1

Hi,

I am in the US living in one of the lucky states that at least has medical Marijuana. That being said, the comment that it helps much more if inhaled is correct, at least for me and apparently some others. Just remember that what works (or doesn't) for one may not be the same for you so best to ignore any replys that claim they know differently. The problem I have found smoking or vaping cannabis for RLS is that it works (for me) but the desired effect only lasts about 45 min to maybe an hour. So if I can't get to sleep in that amount of time, I have to smoke some more (not always a bad thing ;>) ) The good part is that the relief is immediate. I have also been successful for the past 2 months in taking 100 mg.Trazadone for sleep combined with 900 mg of Gabapentin taken about an hour before bed. It has worked wonders and I am getting a full night's sleep now. Best of luck in your journey.

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Jumpey
Jumpey
in reply to madman1

I am so pleased that you have found relief. Long may it continue. Thanks for sharing.x

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TheDoDahMan

Hi, Jumpey,

I've smoked pot for over 50 years and my lungs are still fine. Besides, nowadays the product is so good that you only have to take one toke per session to achieve the effect. If you use a vaporizer, the "harm" to your lungs is even more minimal. Remember that cannabis has been vastly and unjustly vilified for many years. Pot smokers who don't use tobacco have no greater rates of lung cancer than any other non-tobacco using population.

However, I am completely controlling my RLS with 5 mg of methadone x twice daily as prescribed by Dr. B. But I hear that doctors in the UK have not yet wised up to the fantastic results that Dr. B has been obtaining.

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Jumpey
Jumpey
in reply to TheDoDahMan

Thanks so much for your advice and feedback. I'm so pleased that you have found relief. And yes I can't get methadone here in the UK.. As you say not as enlightened sadly.x

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iRobot

> have a 24/7 case oF RLS, and when the pharmaceuticals run out or fail me, I take a herbal remedy called Chill Pill by Futurebiotics. I take 4 or 5 and that relieve's me of rls for hours.

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Jumpey
Jumpey
in reply to iRobot

Cheers for the advice. Where do you get it?x

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iRobot
iRobot
in reply to Jumpey

I buy it online from iherb.com. They ship internationally too Please let me know if it works for you!

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Jumpey
Jumpey
in reply to iRobot

Cheers.I will.x

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Plumcake
Plumcake
in reply to iRobot

iherb I got caught out with as I'm in the UK and had no idea there were a US based company and would have had to pay an enormous tax cost so I didn't collect he parcel and got a refund via paypal. Would have totally outweighed the cheaper price they offer.

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Plumcake

Crikey had a job to find the end of the posts on this subject.

Have you considered using CBD oil? I use it and have done for over a year. I had no idea how to or what amount to use so I was recommended by the originalalternative (formerly CBD bros) to join a group on Facebook and that's where it's at for info and advice. facebook.com/groups/Natures...

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Jumpey
Jumpey
in reply to Plumcake

Hi CBD oil but no help.Glad it's good for you.x

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Plumcake
Plumcake
in reply to Jumpey

It may not have been the right kind of oil, there are several strengths and also decent suppliers which you can trust has the stuff they say it has and also you have to leave a 2 hour gap between any meds or supplements I discovered by joining the FB group. Otherwise they compete for the same enzymes and neither will work. I'm no expert but have learned a fair bit by joining that group. They will help you so much with what may help and what might not and how much to take and there are recipes to make your own balms etc You have to build up gradually to what is your ideal need.

I'm not altogether sure the CBD oil is working for me, and can give it a break to validate.

I believe I've been in a Fibromyalgia flare up all this year, but think it may be passing now as not too much pain the last couple of days but very weak.

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Jumpey

I used capsules from CBD Brothers which is a reutable company . Interesting about the enzymes. Hope you feel better soon.x

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