Intro

[ReallyBigK]

Hi everyone, just wanted to introduce myself as I am new here. I live in the US and have suffered from RLS most of my life. I have been taking ropinirole for many years and am now at 4mg. I live in a state where medical marijuana is legal so I am trying that now with mixed results. It definitely helps, but I don't believe the legal stuff has enough thc to be fully effective. My hope was to use it to help me wean off the ropinirole, but I am skeptical. I have tried not so legal stuff and have found it to be much more effective.....

[SLMCP]

Hi there - how effective is the cannabis you are using? Less effective than the other drugs? How does the C make you feel generally? Interested to hear as the UK government has now agreed to allow GPs to prescribe medicinal C to those with certain conditions, but am sure that won't (yet) include RLS. Take care.

[ReallyBigK in reply to SLMCP]

I am currently only using it in conjunction with the Ropinirole. My RLS only bothers me at night. If I take the Ropinirole around 7:00pm I am typically able to sleep, however if I forget and take it later, then my RLS symptoms are really bad. The marijuana seems to help with this pretty well, easing the symptoms and allowing me to fall and stay asleep. Real marijuana works a lot better for me than the medical stuff ( I vape), I think because of the much higher THC content

[Joolsg]

Marijuana helps you get a little sleep during withdrawal from Ropinirole but that’s about it.

4 mg is way above new recommended maximum of 1 mg ( although the leaflets, textbooks and doctors still think it’s 4 mg).

You’ll need an opioid and a helpful doctor to prescribe it to get off Ropinirole.

Marijuana, even low dose thc, may then help reduce RLS.

[ReallyBigK in reply to Joolsg]

yeah, my GP even told me I could go as high as 5mg. I have an appointment with him in two weeks to discuss weaning off the ropinirole

[Parminter]

I have found, very lately, on two different versions of high THC edibles - aka cookies - that it helps the akathisia quite considerably.

But not the sleep.

THC, or any other cannabinoid, does not assist with lowering glutamate, so far as I am aware, so one may need to try dipyridamole for that.

Remember, there are two aspects to RLS, akathisia and hyperarousal. You have to attack both of those.

Starting with BID.

[Whippetmama in reply to Parminter]

Hi Parminter,

Can you please explain how diprydamole helps? All I can find is that it is an anti-clotting drug? Thanks

[Parminter in reply to Whippetmama]

Whippet, we have too much glutamate, which is an excitatory brain hormone. It should be countered with adenosine, which is a calming hormone, and we do not have enough of that. Adenosine is the one that should make us feel wonderfully sleepy and ready for rest.

Instead, we are exhausted and wired.

Thus the sleep problems. Our 'sleep architecture' is totally out of whack.

Dipyridamole is a heart drug that increases levels of adenosine in the brain, lowering the hyperarousal state that we have to endure.

This is very new news, so the dipyridamole is a stop-gap medication, sort of 'off-the-shelf' until they can nail a more targeted drug - 'bespoke'.

There is a lot of good research now, and a lot of hope.

frontiersin.org/articles/10...

ncbi.nlm.nih.gov/pubmed/296...

[Whippetmama in reply to Parminter]

Thank you very much for the explanation.

[Joolsg in reply to Whippetmama]

Involuntary Dancer and Lotte are both on Dipyridamole and have posted about how it is helping them.

Look up Involuntary Dancer.

[LotteM in reply to Joolsg]

I have to correct that. I am NOT on dipyridamole. My doc did ‘t want to prescribe it, as it may cause (internal) bleedings, which may cause irrepairable harm. That risk is low, but not zero. And the potential for permanent damage was what stopped her.

[Joolsg in reply to LotteM]

My sincere apologies Lotte. Mea Culpa

X

[Svengolly]

Reco try gabapentin . Very effective & Only side effect a bit sleepy .

[Daewood1949]

What do you mean wean yourself off ropininole? How long do you have to be on it to have to wean yourself off it? i just got a prescription on Monday and it does not work for my RLS. Any other remedies?