Mucana Pruiens: Raffs or anyone do you... - Restless Legs Syn...

Restless Legs Syndrome

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Mucana Pruiens

beady3 profile image
16 Replies

Raffs or anyone do you know anything about this stuff have been told it's great . Thanks

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beady3
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Madlegs1 profile image
Madlegs1

This product was discussed recently here, but a search doesn't reveal it.

I know I commented - but have forgotten what I said!😩

As far as I can remember its a dopamineagonist type herb and should be useful for rls.

Google it to be sure.

Good luck.

Bganim1947 profile image
Bganim1947 in reply toMadlegs1

Perhaps you are be thinking of Ferrous BisGlycinate or Gentle Iron. It's fabulous.

Madlegs1 profile image
Madlegs1 in reply toBganim1947

No- definitely the Mucana- it came up here a few weeks ago.

I'm sure the irons are good - just not same subject.

Joolsg profile image
Joolsg

Mucuna pruriens is also known as velvet bean and you can get it from indigo-herbs.co.uk

it's available in pill form or as a liquid tincture. it's supposed to increase dopamine levels in the brain.

I have tried it, especially when going through DA withdrawal but sadly, didn't help me at all.

As we are all different, with different types of RLS and as we all react differently to meds and vitamins, it's worth a try to see if it helps.

Jools

SuperMNew profile image
SuperMNew in reply toJoolsg

This company in the UK sells the whole bean all ground up. It is a wonderful whole FOOD, but it does not contain enough Mucuna EXTRACT to be helpful in stopping the RLS or the PD. It is the EXTRACT powder that works, and it works wonderfully. You just need to get the right thing. I buy mine from NutriVita which sells the purest and most potent 100% mucuna pruriens I have found--and I've looked for a long time. Here is the web address:nutrivitashop.com/products/.... It takes about a week after they send the order to reach me here in the US. I have a friend who is getting hers from this website, but it takes about 10 days to make it from the US to the UK.

God bless!

Keep hoping I can get the energy to research it right.

How you getting on connie50? Hope its going well.

I bought it a while ago and take it occasionally. I think it can be helpful if symptoms are mild. I have reservations about it which I have failed to research properly due to laziness. As I understand it, the mucuna is basically a natural form of dopamine and I worry that it will affect the dopamine receptors by introducing dopamine into the system. Surely it thus mimics the actions of the dopamine agonist drugs that have caused such difficulties for many of us, albeit probably at a lower dosage? If I am right about this (and as I have said I haven't done enough research), then I would think that there is the same danger of augmentation as with any dopamine agonist drug.

Parminter profile image
Parminter in reply toinvoluntarydancer

ncbi.nlm.nih.gov/pubmed/155...

ncbi.nlm.nih.gov/pubmed/286...

ncbi.nlm.nih.gov/pubmed/293...

Hello Dancer.

The Mucuna Pruriens certainly works well for Parkinson's, and it is good to know that traditional, inexpensive meds are available to the poor. Western medicine is just too expensive for much of the planet.

It is possible that the full plant, rather than an 'extract', is superior, in the way that full-spectrum cannabis is superior.

The doses in these studies are large, after all, it is a food, but it is possible to extrapolate down to a suitable dose for WED.

If you are correct, and augmentation could occur, then perhaps it could be seen as a supplement best kept for occasional use when things go pear-shaped?

It is interesting that onset is rapid. That might help during an awful night.

The vendors I have come across always advise a break from the plant, perhaps one week out of four, so they know the potential for tolerance, at least.

nightdancer profile image
nightdancer in reply toParminter

By the way, Parminter, the US RLS FOUNDATION TRIED to change the name of RLS to WED. Could not do it. Go ahead and Google WED, you will get wedding magazines and wedding planners on the first try. The OLD staff tried for 2 years to change the name. Cannot do it, they still had to use "doing business as RLS FOUNDATION" for tax purposes, and copyright purposes. MOST people on.here are not going to know what you mean when you say WED. It was a long message, and lots of money was wasted on "branding". They did a big survey and my groups did a big survey, and the consensus was NOT to change the name for 100 reasons. FYI :)

Parminter profile image
Parminter in reply tonightdancer

I wonder why they changed. There are cases where democracy truly sucks, and a little dictatorial order is necessary.

And no, I do not want to see wedding magazines so I won't even try! Thank you for the warning.

involuntarydancer profile image
involuntarydancer in reply toParminter

Funny you should mention about the full plant rather than an extract, there was someone posting on here a while ago who grew the full plant himself (he lived in puerto rico as far as I recall). He reckoned that using the full plant gave him considerable relief. He was very enthusiastic about the plant. I have only accessed an extract in a health food shop and, as I think I said, it wasn't noticeably effective (though I might try it again). I have no way of knowing whether macuna pruriens works in a slightly different way than the dopamine agonist drugs - I don't have anything like that level of expertise, however I would be cautious about the issue of augmentation arising from use of any drug that operates on the dopamine system.

Parminter profile image
Parminter in reply toinvoluntarydancer

I have been reading more about DAWS, as much as I can considering the occasional paywall. I have requested a few papers from authors and I hope I get them.

I have also read a couple of testaments from patients still suffering DAWS, several years after withdrawal.

I am truly appalled. This can certainly mean years of misery, possibly a lifetime.

The dopamine agonists are the prime culprits, and of those, a big finger is pointed at pramipexole. L-dopa seems not to be implicated, or at least very much less.

The effect is cumulative, so the researchers added up the lifetime exposures, not the size of the daily dose.

Those with any sort of pre-existing addictive behaviours or impulse control issues fared the worst by far. This may mean you snorted coke, or it may mean you were a comfort-eater or a hoarder of thimbles or teddy-bears. Any of the above.

So yes, you don't mess with the dopamine system. But if you must, because you already have, then possibly there are superior ways to mess.

But I am less hopeful, and I think that I may be directly in the firing line.

(Mucuna Pruriens contains l-Dopa, pure and simple, it is not an agonist. I live in an area where the Hindu population is very high, so the ancient knowledge of Ayurveda does not seem strange to me, and the evidence is weighty and compelling.)

Dancer, may I ask if you went through withdrawal? I recall that you have a cocktail which you have refined for your personal profile and that it still included a small amount of a DA.

involuntarydancer profile image
involuntarydancer in reply toParminter

Yes; I was on 1.5mg pramipexole (which is about 2.125mg of US measurement - the two jurisdictions measure the tablets differently) when I was ordered off by my sleep consultant. I stayed off it for about one and a half years before re-introducing a dose of 0.044mg. As I have said, I had developed an undiagnosed impulse control disorder and I had also augmented, although I have read much more significant manifestations of augmentation than I was suffering.

I had a hard time after I came off it. My sleep consultant prescribed 150mg of pregabalin which made no impact whatsoever. I went through the usual 14 days of no sleep and waited for things to start getting better but they just didn't. In the end I had about 3 months of virtually no sleep and my symptoms didn't settle down at all until I persuaded my GP to prescribe me oxycontin. It took 30mg per night of oxycontin to settle my legs.

Once I started to get some sleep (and I think my iron levels started to increase at the same time), things calmed down and over the next few months I gradually reduced my oxycontin dose. After about 6 months I discontinued oxycontin and started neupro (at the insistent recommendation of my sleep consultant). I augmented on neupro after two months. I then started a regime of alternating neupro and kratom every 8 weeks. That worked reasonably well to cover nocturnal urge to move symptoms but I still struggled to live anything like a normal life as I was always exhausted during the day. I continued to experiment with a variety of different drugs and mixes of drugs. It wasn't until I lighted on my existing system (which includes the - very reluctant - reintroduction of 0.044mg of pramipexole) that I achieved anything like a normal life. I am delighted to have a much more normal life now.

Parminter profile image
Parminter in reply toinvoluntarydancer

Thank you so much, that is precisely the sort of information I need.

I am on a relatively low dose, at 0.25, but that is still way too much for me.

I developed hyper-insomnia and ICDs almost from the get-go, on 0.125, but was unaware of the cause.

I am the last person on the planet who should have been given this stuff. Which is why I fear withdrawal and DAWS.

Yikes.

Too many years lost, too much life vanished without a trace.

Ah well, pick yourself up, dust yourself off.

And most of the world does not recognise it as a real disease. My modest insurance will not pay for any of it, even though it is scattered through my genes. Odd. Perhaps I should make a fuss.

I came across a rat study that said, definitively, that pramipexole destroys dopamine receptors.

nightdancer profile image
nightdancer

In ALL of my groups, I know of no one who uses this alone to treat RLS, and has had it work. In fact certain companies were found to be making fraudulent claims about this supplement. Just another FYI.

nightdancer profile image
nightdancer

Since it is SUPPOSED to raise dopamine levels, I would not touch it if I were on a dopamine med already.

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