Withdraw from MIRAPEX to Cannabis - Restless Legs Syn...

Restless Legs Syndrome

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Withdraw from MIRAPEX to Cannabis

mamamo profile image
23 Replies

I have severe RLS and I have been on Mirapex for about 20 years, I need to get off of it as it has caused me addiction problems re gambling etc. and other health related problems. I have tried all other available meds and nothing has worked for me.I am currently just starting to try to replace Mirapex with Cannibis 1-20 oil Has anyone tried this and what information re amount to add (Cannibis) / decrease (Mirapex) etc. It will be a trial and error for m . Any advice?

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23 Replies
Joolsg profile image
Joolsg

I know a lot of people have used cannabis to get through withdrawal but here in the U.K. Cannabis is illegal and the cannabinol oil that is available has no active THC.

I used cannabis, illegally, for a week while withdrawing from ropinirole ( similar to mirapex) & it gave me 2 hours free from all over body RLS for a week. It was brilliant while it lasted but I developed panic attacks so had to stop.

I used tramadol which allowed me about an hour or two of sleep during the worst stage.

Reduce slowly and make sure you have meds (or cannabis) to get you through withdrawal.

Crazyleggs profile image
Crazyleggs in reply to Joolsg

Joolsg Sorry for my ignorance What is THC and what us it's purpose

Joolsg profile image
Joolsg in reply to Crazyleggs

Tetra Hydro Cannabinol. That gives people the "high" & is why it's illegal in the U.K. Despite medical benefits!!!

Reduce the Mirapexin slowly and as you experience discomfort or increase in symptoms increase the cannabis. You can't OD from it, well you can take too much and it can be uncomfortable psychologically but you can't kill yourself from taking too much; if you are taking CBD only oil if you take too much you shouldn't notice anything.

What type of oil is it? As Joolsg says the oil with the THC is illegal in UK but it is much more effective imho.

mamamo profile image
mamamo in reply to

ratio of 1 THC to 20 CBD in oil drops IS IT GOING TO BE HARD TO WITHDRAW FROM mIRAPEX

Crazyleggs profile image
Crazyleggs in reply to

Dear Rafts. What is CBD only oil?

in reply to Crazyleggs

Thats the oil you can legally buy in Ireland/UK. It contains one of the hundred odd components of cannabis albeit an important one.

You can make oil using cannabis to extract more cannabinoids including the demonised baby eating society destroying THC :) .

The later oil is much more effective and can treat a myriad of conditions however due in part to a racist that wanted to keep his job and successive governments, (the US in particular) in thrall of Big Pharma, Petrochemical companies, the prison industrial complex and the 'war on drugs' (which the drugs are winning) it has been kept illegal and out of the hands of people that need it as much as possible. Sorry I fell on to my soap box there :)

Is Mirapex another name for Siffrol? I have been on Siffrol for six years and it has worked 100% for me in keeping the symptoms of RLS at bay. I absolutely love it and don't want to consider life without it.

I too suffer from severe RLS and have done since childhood. I am now 64, and altho Siffrol makes life livable, it has also ruined it.So agree with you regarding the side effects .... they are hideous.

🔹Increased sex drive ... yep (my solution - stay single

🔹Gambling .... yep (however, money isn't the only currency that one can use to gamble with). I have gambled with my children's love and have lost one child due to my personality changes.

🔹Obsessiveness ... yep, to the absolute extreme. Once I begin a task it becomes all consuming. I am an artist and it's my only real passion but it totally took over my life. I don't paint anymore. Just not game to allow OCD the chance to once again raise it's ugly head. And that's what obsessiveness is .... OCD. And I so miss my painting, it was the only thing in my life that truly made me happy.

🔹Over-spending (uncontrollable shopping ... yep.

So I fully understand where you are coming from. I too am going to give the marijuana oil a try. Please read my previous posts. And let's compare our outcomes.

involuntarydancer profile image
involuntarydancer in reply to

Phogan, you have truly been through the mill with pramipexole. It might be worth trying a drug holiday at least. Reduce the dose very slowly and eliminate eventually (you might need an opioid temporarily as your RLS symptoms will go crazy for a few days when you eliminate pramipexole). Stay off for 3 or 4 months. Use an opioid, gabapentin/pregabalin, kratom, mmj - whatever works for you.

Then after 3 or 4 months you could resume pramipexole at the lowest dose and manage it carefully by coming off it every so often to avoid the dose creeping up. OR you could try neupro patches which are a slow release form of ropinerole (another dopamine agonist like pramipexole) and are supposed to be less prone to augmentation and the need for gradually increased doses.

I know that the relief afforded by pramipexole makes it very difficult to contemplate doing without but given the intense side effects you are experiencing, I would have thought it might be worth committing to a new programme.

libraryannie profile image
libraryannie in reply to

Oh my gosh!!I have been on Mirapex for approx 20 years and I have realized that I am uncontrollably addicted to online shopping. I am also a quilter and gardener but didn't connect my need to sew or plant a seed at all kinds of odd hours (like when I should be cleaning house, cooking dinner, exercising or sleeping) with the pills I have been taking. Siffrol side effects SOUND very similar to my experience with Mirapex. The prescription has been increased again and again over the years. For the last month I am trying to slowly reduce my dependency. I look forward to hearing your experience with the oils. Best of luck.

Crazyleggs profile image
Crazyleggs

How do you use the 1-20 cannabis oil??? I have tried cannabis for glaucoma- got a medical card went to cannabis pharmacy and was given a specific strand for glaucoma but it made my RLS worse so I only used for about a week. It was not an oil. So how do you use?? I am trying to come off pramipexole which is mirapex Have had a good couple days with Gabapentin and hydrocodone but sure would like to try a safer less addictive path I'm with mamao here I'd like more information.

too so I'll be following this post closely It's legal now where I live in California now.

Crazyleggs, you could consider kratom. I think it is legal in California. I find it very effective for RLS symptoms (as effective, if not more so than the oxycontin I was taking previously) and it causes a much lower level of physical dependency than opioids. For me Kratom is much more effective than Cannabis in combating RLS. In turn, full cannabis made into an edible butter is much more effective than cbd oil - as Raffs has already said.

SueJH1963 profile image
SueJH1963 in reply to involuntarydancer

I had a ten year remission of RLS and it may be because I started taking Kratom tea for my anxiety at that same time. It has just now ceased to work for me. But ten years was a blessing nonetheless. In the US, the corrupt pharam-aligned DEA is trying to schedule Kratom even though it isn't an opiod and some states have outlawed it. So not everyone can get it unfortunately. The American Kratom Association is fighting to keep it legal.

involuntarydancer profile image
involuntarydancer in reply to SueJH1963

It is such a shame that rather than investigating the properties of kratom the impulse is to outlaw it. It is commonly considered akin to an opioid but there are some indications that it operates on slightly different receptors and thus could possibly be a useful adjunct to keeping opioid reliance lower. In my experience it is definitely less dependence inducing and is much easier to discontinue than regular opioids such as oxycontin. The withdrawals are far less severe. Moreover it is a very useful tool in easing the horrors of opioid withdrawal.

It would also be so much less anxious making taking it if it were legal and quality controlled.

SueJH1963 profile image
SueJH1963 in reply to involuntarydancer

Partly because it's a plant, there is less money in it. Can't patent a plant. But they could work on looking for drugs based partly on it they could patent, I should think. It's all about money here in the US.

Mamamo, my experience suggests that cbd oil will not be sufficient to cope with the temporarily much worse symptoms you will experience when coming off mirapexin. In general nothing less than an opioid such as tramadol or oxycodone will be required to deal with the worst days. However once you are over the process of eliminating the pramipexole you may find that your symptoms are less significant than when you were on pramipexole.

It is really worth getting your serum ferritin levels checked - you need the actual figure - not just told they are 'normal'. You should aim to get them to over 100 - you can use an oral iron supplement. This should help to improve your symptoms also.

mamamo profile image
mamamo in reply to involuntarydancer

Thank you all for this advice. I have 6 days now cutting back .25 mg of mirapex and using now .8ml of CBD (1-20) I started to have RLS during the day and no sleep again but I must get off this mirapex

I can see a long slow progress ahead. My concern is if I can get off of the mirapex(pramexerole), and during this withdrawal ,what is going to supply the dopamine which will stop the RLS which will continue. I have tried all of the dopamine products available in Canada and they did not work for me Any other suggestions.

You have absolutely identified the problem. When you withdraw from a dopamine agonist there really isn't anything providing the dopamine (as I understand it - I am not a scientist - just, of necessity, relatively well educated regarding RLS). Consequently your RLS does become extremely pronounced and very, very little sleep is possible. The important thing to bear in mind is that this is temporary - after some days your body reverts to about the level of pre-mirapexin days.

The only drugs that help with the really difficult few days when the RLS goes into hyper-drive are opioids. Either take opioids or struggle through. Many of us on here have struggled through without opioids and survived but there is no denying it is hard. Kratom can help also. The other thing to be sure of is that your serum ferritin levels are high. This seems to be beneficial in every aspect of RLS management, including reducing the incidence of augmentation and helping with the withdrawal period from a dopamine agonist (except for a small minority for whom - due to genetic issues - it makes no difference).

When you get the dopamine agonist out of your system you can try other drugs, for example Lyrica (pregabalin), gabapentin, and possibly opiates. Eventually some people return to a dopamine agonist on a very low dose but taking great care to manage the drug so as to avoid augmentation. So for example I am experimenting with a system where I use the lowest dose of neupro patch (a dopamine agonist) for a few weeks to a couple of months and then come off it for a couple of months and use kratom to manage my symptoms. I also take a low dose of pregabalin. So far it is working reasonably well. You will see all sorts of combinations on here. Everyone is different and there are very few people using the same system.

mamamo profile image
mamamo in reply to involuntarydancer

The following quote suggests that Cannibis increases the body's own dopamine levels so I am counting on that for now As you know mirapex is the drug most used by Parkinsons patients. Quoted as follows

"Cannabis and the endocannabinoid system (ECS)

When you use medical cannabis, the cannabinoids within the plant—including but not limited to THC—engage a large network of cell receptors known as the endocannabinoid system. And that’s good news for Parkinson’s patients: the ECS plays an active role in a wide range of bodily functions, including:

Studies suggest that cannabis supports the ECS by increasing the body’s own dopamine levels, making this neural network more responsive and better able to execute motor function while also alleviating other Parkinson’s symptoms."

involuntarydancer profile image
involuntarydancer in reply to mamamo

That's interesting - I take cannabis some nights also but don't find it particularly effective for RLS urge-to-move symptoms - I use it to help achieve sleep as I suffer from substantial RLS related insomnia. It is very effective for inducing sleep. Maybe it does help a bit with RLS also - it's sometimes hard to tell. It does seem to be very strain specific. Someone on another forum swears by Critical Mass. Unfortunately it is not legal where I am so I don't have much control over the strain. I have started growing my own in order to overcome this problem but sadly couldn't get any critical mass seeds.

I should say I am not a recreational drug user - can't even have alcohol any more (sigh). I only take the cannabis for RLS related problems and never took it before I came off mirapexin last year.

I too want to dispersewith the drug Siffrol (main reason being the hideous side effects) and am quite serious about trying medical marijuana. Will be following your posts closely

libraryannie profile image
libraryannie

I am slowly cutting back my daily 1.5mg prescription of Mirapex. I don't have the oil you describe but I have had luck with smoking just a little bit of marijuana at bed time. I have read that an Indica will help but I haven't had the opportunity to try it. All I have is some Sativa which is not known for inducing sleep but it helps. These days marijuana is extremely strong so if any of you try it, start with a single puff the first night and add slowly til it works for you. If I wake up in the middle of the night, I don't smoke again because it might affect my functioning in the morning.

rsears57 profile image
rsears57

I'm not sure how it's going to work I am actually getting some of that CBD oil myself this week

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