Hi everyone. After a really bad bout of RLS, I went to see a north west based Neurologist, who really understood RLS, and helped me walk through the options again from scratch. Iron is now over 90, and tried tramadol and codeine which didnt do a lot, and the final option he has asked the GP to give me is a Rotigotine patch.
In the letter he also suggested that Cannabis has been known to help, so I thought I would try that. Buying it is very difficult in the UK, but I got some hash flapjacks, and taking just a small amount over the last couple of nights has completely stopped my RLS. I would like more control over what I take, so where to start? Is there a particular type of cannabis that is recommended, or a starting dose, and how can you ingest it other than cakes and smoking? Looking on cannabis seed websites, its mind boggling what is out there. Any help to get me started would be appreciated, and where to start
Thanks
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phantom388
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An interesting question about cannabis. I don't know the asnwer, I hope someone does.
As for your neurologist, I suspect not that good, weren't gabapentin or pregabalin suggested? Dopamine agonists like rotigotine are not a good option and the gabapentinoids shoud be considered first.
Hi Manerva Sorry that was probably a short intro - my RLS is intermittent so I am lucky in that sense. I have tried Ropinirole, Amitripyline, Gabapentin, but not Pregabalin, and this has been over many years. To be honest various results, and your frequent posts and the thought of augmentation or addiction on anything puts me off, I find these are long term solutions as well, my RLS can last 3-6 months then go away for a year, but when I get it, it is bad. Hence the dip into cannabis, which was surprisingly good, but the morning felt like I had been on a bender, so I want to get better control.
I take on board your note about rotigotine, it was suggested as something I could wear for just short periods when I get an RLS attack.
Amitriptyline should be avoided if you have RLS, all such tricyclic antidepressants and SSRI antidepressants make RLS worse!
If a dr prescribed you Amitriptyline for RLS they were possibly negligent.
You shouldn't really use a patch intermittently. Nor any other dopamine agonist.
However it does depend what you mean by intermittent. If you don't get it for months then have it for weeks and during those weeks you have it every night or more than say 3 nights a week, then it's not really intermittent.
Intermittent is when you get it occasionally say a few times a month. In which case L dopa is an option as long as you only take it a few times. It has a very high risk of augmentation. Taking a dopamine agonist for a few weeks means you can become dependent on it and can get withdrawal symptoms if you stop it.
Gabapentin isn't like L Dopa or the dopamine agonists. You can't just take it "as necessary". You have to take it regularly for at least 3 - 4 weeks, at an effective dose, for it to work.
If you tried it and found it didn't work, you possibly didn't take it for long enough or not enough.
If you try the cannabis, that may be a better option. Be careful where you get it from. More modern versions can be more potent than they used to be.. Plus an "older' liver might not be so good at metabolising it - hence the hangover.
Unfortunately there is no answer to your question. People are different. From reading and reading posts I can tell you some things. Most people are helped with THC, the psychoactive part of marijuana (rather than CBD--although some people are helped with CBD). I found I had to get stoned, or almost stoned, to have it help. (I use it more to help me sleep rather than for my legs, but others have been helped in this way too.) If you get too stoned, it may keep you awake and can cause anxiety. I would suggest using a tincture because it is easier to dose. At first start with under 5 mg. and see how you do. Also, different marijuana will effect you differently if you are smoking or vaping which is even harder to dose. CBN, which is even more expensive, is marketed for sleep especially--it did nothing for me. It took me and others a long time of experimenting to learn what worked for me. Good luck.
Thanks for that - I never though of making a tincture. I have tried the Holland and Barrett CBD stuff, but that didn't make any difference. I am quite analytical in my approach to things, so I will try and get down to something that works and see how minimum I can keep it. I am 63 and never touched cannabis in my life, so its really strange to be trying it now, but I hope a week or so trying it, and then ease off it and see what happens.
When I referred to cannabis, I mean't cannabis, not CBD oil. Cannabis, as you know, is illegal in the UK. I note quite a few RLS sufferers say it works for RLS.
Nor can you legally buy CBD oils with any more than a limited amount of THC in it in the UK, Forget Holland and Barrett!
I wouldn;t recommend CBD oil, there are so many different products and some of the products you may find available in some states of the US are legal there, but not here.
Also, there is no really reliable information about what combination of cannabis derivatives is best for RLS. There's no real evidence that any CBD oil works for RLS.
Giving Holland and Barratt your cash may be a waste of it.
OK, pull up a chair and let's begin.
Cannabis has been found to be most useful to RLS sufferers if they smoke it as opposed to any other ROA. This was identified in a piece of research I cannot lay my hands on at the moment and kept with my own findings. I have vaped, smoked, eaten cannabis laced foods, taken full spectrum cannabis oil and CBD ONLY oil.
The CBD only oil was useless - although this was at a time when I was unable to have any other drug treatment for RLS.
Cannabis oil and cannabis laced foods all took too long to kick in and for me I need something that works fast and that I can titrate easily - I take a pipe at a time until I reach desired effects in a few minutes; if you eat it you could be looking at a 2 hour wait, not great when your body is playing silly buggers with you.
Vaped cannabis does not give my lungs as harsh a hit and therefore 'feels' milder. I know its not, however I cannot get away from that feeling in the chest adding to my perception of increased potency.
There are two types of cannabis 1) Sativa (more of an upbeat cerebral type high that has been linked to increased creativity) and 2) Indica (more of a body type stone that is better for medicinal use). I have smoked for many years and notice little difference in either type but more from strains - I'll come back to that soon.
The effect of the cannabis is further effected by the THC vs CBD ratio and you can have high THC Sativas with low CBD, high CBD Sativas with low THC and the whole spectrum inbetween and the same with the Indicas.
The effect of the cannabis is further complicated by the length it is grown, harvest earlier and you have a more upbeat version of cannabis, if it grows longer it will hit the body more.
IT IS AGAIN complicated by the various strains of the plant - thousands of them, well hundreds at the very least - and the interplay of the 100+ cannabinoids.
Guess what? Yup, IT IS YET AGAIN complicated by how much taken, the mindset and environment of the user - take too much and that increased anxiety could make the RLS worse, take it before going out and your body may become very restless indeed!
It is a case of keep experimenting until you find what works best and either keep hoping you get a constant supply or take that into your own hands!
Of course remember that cannabis use, like all drug use, should be fully researched before starting and it is vital for you to make yourself aware of all the potential negative aspects such as being caught in possession of it!
Hope that clears things up to a nice muddy level for you
😂 Love it Raffs. I agree about the experimentation. Luckily my daughter’s friend has a Ph.D in chemistry & grows organic cannabis, distills it into oil & I get it from him. He uses Sativa ( don’t know the specific strain) & I vape when needed. It’s bloody expensive though so try to use in moderation. So much for legalised cannabis for my MS!
I’d avoid the patch. Grand Daddy Purple is supposed to be a good strain for neurological conditions and you can buy seeds from the Netherlands online legally. Growing them is still illegal in the UK but......
I have found illegal cannabis to be very effective in helping control the RLS and it is great for sending you into a deep sleep ( so less likely to be awoken if RLS does start up).
Excellent explanation, raffs. I use a tincture and and it changed my life. I even became a distributor, I was that impressed. What you want is "full-spectrum from cannabis", Also known as Rick Simpson Oil or RSO. What I tell people who come to me and are cannabis virgins is to start low and take it right before bed. You will, over time, become accustomed to it's effects. Also, the effect is cumulative. You may not get relief the first, scond eventhird day. Just keep at it. The perfect dose is when you get relief. Remember, start low.
I am in UK and looking to give RSO a try and would welcome any recommendations of reliable suppliers? Not sure if this is ethical, just not sure where to start. Thanks.
Hi. I'm on the Medical Marijuana in USA, Florida. Not for my RLS but for chronic pain, on disability as well. For myself, it does calm them a little but I take Pramipexole for total relief. We have the tincture, vape pens, smokeable and balm. They give us certain monthly amounts that we can't go over.
What sort of amounts are you allowed? With individual reactions to the drug not to mention tolerance it may take large amounts to be effective (relatively speaking) so limits on amounts may seriously limit its efficacy/use.
Did you try cannabis oil - CBD only oil that has only 1 of over 100+ cannabinoids OR did you try cannabis oil that is full spectrum oil and contains ALL of the cannabinoids, many of which have good medicinal effects?
The 1st isn't much use but the 2nd is a life saver!
The CBD oil only is not much use for RLS. The cakes may have been made with cannabis that was improperly prepared or cooked to much and destroyed the cannabis.
OR if it was your first time you are unlikely to get high (true fact - many 1st time cannabis users don't get high as they have to internal reference point or ingest incorrectly).
Eating cannabis makes to very difficult to regulate the dose and the risk of OD and an unpleasant experience (nausea, palpitations and severe anxiety). Smoking or vaping allows for small puffs to be had until proper dose is achieved and if you do take to much it wont be as intense or last as long.
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augmentation on neupro+Gabapentin. should I switch to a different dopamine agonist? All that’s helping is cannabis. 
