Please Read 25 Years of Research Pays Off

Please share your experiences, successes, and failures in using non-drug therapies for RLS/WED (methods of relief that don't involve swallowing or injecting anything), including compression, heat, light, stretches, acupuncture, etc. Also under this heading, medical interventions that don't involve the administration of a medicine to the body (eg. varicose-vein operations, deep-brain stimulation). [This forum contains Topics started prior to 2009 that deal with Non-prescription Medicines, Supplements, & Diet.]
TinkerM
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Please Read 25 Years of Research Pays Off

Postby TinkerM » Tue Jul 01, 2014 5:07 pm

Before I start I want to stress that this is written after 25 years of my husbands battle with RLS that progressed to his entire left side of his body. He was seriously contemplating suicide as he could no longer take the pain ,physical and emotional breakdown it was causing. We had tried everything in all the forums from soap under the sheets to he latest RLS prescription medications, which made it worse and caused dependencies that had their own nightmares, and every food possible cause known. After 25 years I believe I have found a breakthrough and need to share this. My doctor who also has done all she can and every test and specialist is working with this and trying to get a study so it can be brought to the attention of millions that are suffering from this insidious horrible condition that most specialists just shrug their shoulders at and say no one knows and write a RX for medications that have horrid and dangerous side affects. So please.. please try this. There is nothing in it for me, but the hope that it helps someone get their lives back.

There are no side affects if taken as suggested... if to much Taurine is taken light headed may happen at worst. And of course always confer with your doctor before taking anything...

Okay..

There are new tests that have shown that Glutamate receptors in RLS patients are higher in numbers than non RLS tests. It has also been well established that testing on RLS patients show lower Dopamine and Seratonin levels. (please pardon typos I am legally blind and doing my best) So knowing this for 2 years I have been trying natural medicines for the last two known but never worked on the Glutamate receptors and sadly nothing worked. Glycine seemed to have worked to a moderate sometimes higher degree to lesson the intervals but it had side effects of hallucinations which is typical of the RLS prescription medications. When I learned and studies the Glutamate receptors articles and trials with what I was using for Seratonin and Dopamine enhancement I found Tuarine. I had also heard of Tuarine on the forums and that it worked for milder cases of RLS but seemed not that many were sucessful with it alone. Tuarine btw is amazing for many things one nervous system health.

Without going into all the things he took , all the things elliminated over the years here is the formula that results started immediately and its been 5 months and the first time in 25 years my husband has not has so much as a twitch which even when he did not full bout of RLS he always twitched all night long, every 60 seconds..yes I counted remember this is a 25 year nightmare we lived.

We buy our products from Swanson online but they are available many places I strongly suggest however not switching brands as I believe these are the best out there that worked when others do not. All are relatively inexpensive which is another added bonus

Brand NOW Double Strength Taurine 1000mg x2 morning x2 evening

Brand NOW Dopa Mucuna 15% L-DOPA Mucana pruiens x1 daily

Brand Swanson GABA Gamma 500 mg x1 daily

While starting this regime he also used the following when a episode would start but within a month there have been no more episodes but nice to have as it worked for the entire 8 hours of sleep

Hylands restless leg can be bought also at Swanson sublingual under tongue

If you have any questions please feel free to contact me anytime. I know there are thousands of webpages on RLS and hundreds of hopes and sincere attempts and some work for some people. My husbands RLS was hiddeous and he felt like he was being slowly electrocuted and it was awful to watch his arms and legs spasm violently at times and his wanting to live gone. So as extreme as he was and that sounds great "was" we need to get this out there. Please let us know if it works for you and if it does I ask one thing only please pass it on.... thank you

TinkerM
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Joined: Thu Aug 25, 2011 7:23 pm

Re: Please Read 25 Years of Research Pays Off

Postby TinkerM » Sat Jul 05, 2014 11:29 pm

I am sad no one had responded to this.. I hope someone at least tries this. My doctor now has had 5 people who have had their RLS go away while on this... here is hope and so many at their wits end and goes ignored.. :?

ViewsAskew
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Re: Please Read 25 Years of Research Pays Off

Postby ViewsAskew » Sun Jul 06, 2014 2:00 am

TinkerM - so sorry. I have your links/products bookmarked but haven't finished my research. Thank you for sharing. We definitely appreciate it.

It must be wonderful to have reduced the symptoms this much. I'm sure your husband is very pleased.

Many of us have tried so many things - we get a little jaded and wary of new things at times. The other thing we find is that things help one person miraculously, but few of us can reproduce it. Only speaking for myself, I've tried at least ten to fifteen such things in the past - none have helped, even though the person they worked for swore by them. We tend not to jump up and down immediately and are a bit cautious with anything new.

I'm definitely doing some research and finding out more about your solution. I imagine some others are doing the same.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Re: Please Read 25 Years of Research Pays Off

Postby Polar Bear » Sun Jul 06, 2014 2:12 am

At the moment the only item mentioned that I am 'off the top of my head' familiar with is Hylands Restless Legs'
It didn't work for me but I believe there are others who feel it is a benefit to their symptoms.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: Please Read 25 Years of Research Pays Off

Postby ViewsAskew » Sun Jul 06, 2014 5:06 am

Polar Bear wrote:At the moment the only item mentioned that I am 'off the top of my head' familiar with is Hylands Restless Legs'
It didn't work for me but I believe there are others who feel it is a benefit to their symptoms.


It didn't work for me, either, but am hoping that there is something to the supplements.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

KDecker1612
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Re: Please Read 25 Years of Research Pays Off

Postby KDecker1612 » Tue Jul 08, 2014 1:30 pm

Were the ones recommended once a day taken in the morning or evening?

badnights
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Re: Please Read 25 Years of Research Pays Off

Postby badnights » Sat Nov 08, 2014 9:24 am

I'm always on the lookout for new things to try, so I had to look this stuff up. How is your husband doing now? Is he still noticing improvement, or has the effect worn off or things gotten worse?

If anything is helping, it might be the taurine. That's the stuff they put in energy drinks, because it was known to be used by the body in times of stress and physical activity, and a few studies hint at improved athletic and mental performance. Oddly enough, there is also evidence that it actually has a sedating effect on the brain, For WEDers, that would be a good thing. I would try it with my eyes wide open, because so little is known about its effect on the brain. According to Mayo Clinic, up to 3000 mg /day are safe; your hubby is taking 4000.

I would approach the Mucuna pruriens with caution. First, I would like to point out a fallacy in the original post:
It has also been well established that testing on RLS patients show lower Dopamine and Seratonin levels.
No such thing has been established. The only connection between WED and either of those transmitters is that dopaminergic drugs initially relieve WED symptoms. All studies looking for differences in dopamine levels or dopamine-receptor levels have not shown any differences between WEDers and controls. I don't think anyone has studied serotonin in that regard.
Second, this Mucuna pruriens plant contains L-dopa. L-dopa is never administered by itself, it is combined with carbidopa, a chemical that retards dopamine synthesis (eg. Sinemet is levo-carbidopa) because otherwise the peripheral nervous system (not the central NS, i.e. brain) will start to manufacture dopamine, and this can cause an excess of dopamine in the body outside of the brain. Third, even if it were combined with something like carbidopa, I wouldn't trust this drug because it eventually causes WED to get worse in almost everyone that it initially helps, so there is clearly something we don't understand about the role of neurotransmitters in WED, and saying we need dopamine is oversimplifying things.

The GABA is interesting, because if any of it actually reaches the brain, it would be a sedative. However, whatever research I could come across quickly suggests there is no evidence one way or the other. Claims of health-related benefits are not supported or supported only weakly by research.

Finally, the Hylands product is homeopathic, meaning it has no active ingredients. (I have discussed homeopathy elsewhere on this board so I won't repeat myself here.)

So all in all some interesting stuff in your husband's regimen. I am curious to know how he is doing these days, and I am sure others are curious as well.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

ViewsAskew
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Re: Please Read 25 Years of Research Pays Off

Postby ViewsAskew » Sat Nov 08, 2014 9:57 pm

In the research I read, the GABA gamma was not shown to be effective at all in increasing GABA in the brain. i found the same about the taurine and the dopa mucuna.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

cornelia

Re: Please Read 25 Years of Research Pays Off

Postby cornelia » Sun Nov 09, 2014 10:54 am

I took the Mucuna P for weeks and it did nothing. I don't know why I tried because I don't believe in these homeopathic substances etc. at all.

Corrie

badnights
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Re: Please Read 25 Years of Research Pays Off

Postby badnights » Wed Nov 12, 2014 11:39 am

Yup it's funny what we'll do when we're desperate. I even tried a homeopathic remedy for a while (with no effect, as I expected) (which perhaps was the problem). the dopa mucuna is a plant product, so not actually a homeopathic substance.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Fallenarches
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Re: Please Read 25 Years of Research Pays Off

Postby Fallenarches » Sun Apr 12, 2015 11:08 pm

Greetings: I've posted a message two months ago saying that I was helped from reading your post about Gaba and Taurine. I'm also a Swanson's customer and so I ordered these products. Like your husband, I'd tried everything. I was up until 4 a.m. soaking my legs in Epsom salts, drinking molasses and taking a multitude of over the counter remedies--often to no avail. I couldn't find a sleeping pill strong enough to allow me to sleep. Yet when I started taking Taurine and Gaba, I slept for the first time. That broke the terrible cycle of RLS. Every night I take this combination along with magnesium. Thank you for sharing what worked for you and your husband.

ViewsAskew
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Re: Please Read 25 Years of Research Pays Off

Postby ViewsAskew » Mon Apr 13, 2015 1:36 am

So glad to hear this worked - I wonder why it helps some and not others.

I've tried this combination, exactly, and have had no help from it. Must be something different about some of us....
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

tommy108
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Re: Please Read 25 Years of Research Pays Off

Postby tommy108 » Thu Apr 21, 2016 6:25 pm

Hi Tinker M!

I was just officially "diagnosed" with RLS yesterday but have been battling it for ten years or so. My doctor sent me to this site, and your entry jumped out at me. So I wanted to thank you, and let you know I just ordered the four pack you recommended on Amazon.

Reading through all the posts has been both horrifying and comforting This disease is so deceptive and difficult to pin down. And yet I am touched by the human spirit, people who refuse to give up and keep fighting for the happiness we all deserve.

Anyways....I could write a book on all the things I have tried that haven't worked. But the user reviews on amazon for the supplements you recommended are spot on, plus the clarity and passion in your message, I am going to beat this sucker. My case isn't is bad as your husband's and if he can, I can.

I am curious....

1. How goes it now?

2. Did it work for the other 5 patients your Dr referred this treatment to? What did you learn...is there some tweaking necessary in the amounts and time of each pill taken?

3. For the Dopa and Gama, where only one pill a day is requird....what time of day do you recommend?

Again, thank you!
tommy


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