amino acids...

Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
ViewsAskew
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Re: amino acids...

Post by ViewsAskew »

For thirty years or more, a person here or there has great luck with vitamins, eliminating something, or other supplements. It doesn't ever seem to help all of us, though, and usually not even a majority. Until we know what really causes it, we won't know why this stuff is so hit or miss.

In the meantime, it's always worth trying, but I always try to not get excited about it....because the chances are slim it's going to work for a majority.
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.

Chipmunk
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Re: amino acids...

Post by Chipmunk »

I'm guessing it has to do with your particular body chemistry and how the amino acids interact with it.

For example, giving estrogen to a woman in her 20's and a woman in her 60's will have very different results but it's the same substance. The effect depends on how much estrogen the woman had to begin with, and how responsive her body is to it.
Tracy

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

pjmccoy1
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Re: amino acids...

Post by pjmccoy1 »

Aveerik/Wendy1961??
I received an confirmation email from Western Reserve that trial pack had shipped. They suggested I stop the Horizant and Clonazepam while using their amino acid mix. Anyone who knows anything about RLS KNOWS that you cannot abruptly stop most of these med's, especially CLonazepam. I made that stupid mistake (knowing better but forgot) after trying acupuncture last Fall (which in and of itself was a big leap of faith because I am mortified of needles and as a Christian some Chinese ancient therapy concerns me some (hope I don't offend anyone). But this acupuncturist told me to stop my clonazepam which I did. BIG BIG MISTAKE. Anyhow at the time I was only taking .5 mg (not all at once either). So I did on a Friday night. By Tuesday a.m. I went postal. Extreme anxiety, RAGE, crying, irritation, etc... Of course I didn't know what I was experiencing was withdrawal symptoms. I called my best friend (PFNP) and she told me take 1/2 dose (.25 mg) and within 10 minutes I was calming down. So that makes me a little leery of this company recommending this. I'm such a skeptic anyhow. And this lady from Western Res says she suffers with RLS and is a nurse.... So... does that make sense that a NURSE who should know not to carelessly suggest abruptly stopping any Rx...... Hmmmm.... I will try sample but I'm not abruptly stopping anything. I think titration is the term that doc's recommend when dialing down off some Rx's....
PJ, Heaven Bound

rthom
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Re: amino acids...

Post by rthom »

Great info thanks for sharing this Pam. Sorry it went so bad for you

Polar Bear
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Re: amino acids...

Post by Polar Bear »

It concerns me that sufferers who have not researched for information could be following information/instruction such as this.
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

Chipmunk
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Re: amino acids...

Post by Chipmunk »

Polar Bear wrote:It concerns me that sufferers who have not researched for information could be following information/instruction such as this.

No kidding! I wonder why they would say such a thing?
Tracy

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

pjmccoy1
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Re: amino acids...

Post by pjmccoy1 »

Who knows? I responded to the "nurse" and told her I wasn't going to abruptly stop Rx's since it isn't safe or recommended. Thanks for feedback. Will let you know how it goes. Agree, RLS sufferers even if not reminded by physician can read the Rx labels and they clearly state DO NOT STOP ABRUPTLY WITHOUT CONSULTING PHYSICIAN. The Rx literature also states the same as does most Rx info posted on other website like webmd and others. This is why I'm leery about ordering things off internet. And, many of the RLS Rx's have depression, anxiety and sometime suicidal thoughs as side effects so can you imagine just STOPPING them. YES, I want off all Rx's but I'm not going to go cold turkey. I'm extremely sensitive to med's and have always had to take lowest or even half recommended dosage because of my reaction. I am cautious, however, RLS can make you so desperate you might try anything. And there are so many articles proving link between FATIGUE/EXHAUSTION as a result of RLS insomnia that cause depression and anxiety. I still do not know which came first for me the chicken or the egg. Wish I had NEVER taken the 1/2 doze of lowest ZOLOFT for anxiety/depression/OCD when I was 40 because it was appx 18 months later that I developed FIRST symptoms of RLS. And now we know that zoloft and other dep/anxiety med's have "periodica limb movement" as a side effect....
PJ, Heaven Bound

pjmccoy1
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Re: amino acids...

Post by pjmccoy1 »

This is communique I received. Just be careful is all I'm suggesting to RLS patients. It's a balance and although I'm hoping that amino acids might be beneficial it's an individual tightrope we, that live with it at all levels, must walk by ourselves using our own intuition and discernment. Thanks
""From: Western Reserve Labs <westernreservelabs@hotmail.com>
Date: Thu, Sep 12, 2013 at 2:14 PM
To: pam>
Hello Pam--

Just wanted to let you know that your free 10-day trial of RL Solution was shipped today.

Please note--and this is very important--you must follow the directions exactly when taking RL Solution. I know for a fact that drinking anything carbonated or alcoholic washes it out of the blood stream almost immediately. (I suffer from this as well.) And we would also appreciate any feedback from your trial sample--good or bad. Although I think you'll be rather happy with the result. Please let us know what you think!

Thanks,
Mercy Heston
Western Reserve Labs
----------
From: pam>
Date: Fri, Sep 13, 2013 at 4:18 PM
To: Western Reserve Labs <westernreservelabs@hotmail.com>

I haven't drank anything carbonated in over a year. I developed extremely sensitive teeth in May 2012 and haven't had diet cokes or anything cold or carbonated since then. So, not to worry. I don't drink either so that won't be a problem. I am on Rx's Horizant and Clonazepam for the RLS and I occasionally take powdered Magnesium in the evening but not daily. Does that make any difference? Pam
----------
From: Western Reserve Labs <westernreservelabs@hotmail.com>
Date: Sat, Sep 14, 2013 at 11:12 AM
To: pam >
Hi Pam--
You might want to consider setting aside the Horizant and Clonazepam while taking the RL Solution to eliminate confusion about the results. Also, try not to take the RL Solution while sitting; you should walk or do some other activity right after taking it. This promotes the flow blood to the extremities and dilates your arteries.

Please let us know how this works for you!

Thanks,
Mercy Heston
Western Reserve Labs
----------
From: pam >
Date: Sun, Sep 15, 2013 at 1:17 PM
To: Western Reserve Labs <westernreservelabs@hotmail.com>
I cannot abruptly stop clonazepam there are horrific withdrawal side effects. Made that mistake at the suggestion of an acupuncturist. Also, am not supposed to stop the Horizant. Both are Rx's that require a dial down period.
We shall see.
----------
From: Western Reserve Labs <westernreservelabs@hotmail.com>
Date: Sun, Sep 15, 2013 at 6:41 PM
To: pam >
By all means, continue your prescriptions if your physician recommends. RL Solution will not interfere with them.

Best of luck, and please let us know how things work out!

Thank you,
Mercy Heston""
PJ, Heaven Bound

Chipmunk
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Re: amino acids...

Post by Chipmunk »

It sounds like she didn't read your message carefully and thought you were saying you took all of them as needed, instead of just the magnesium. Once she figured it out she was supportive of you continuing.
Tracy

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

badnights
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Re: amino acids...

Post by badnights »

I got a trial pack a week or so ago. It was poorly packaged and one of the pills had crushed, coating all the rest with powder, making it look like most were wrecked but it turned out to be only one.

I tried one (as recommend) in the evening, instead of my usual 6 mg dose of hydromorph contin. (I had already taken 3 mg at 10 AM and 3 mg at 6 PM as usual.) I could feel symptoms coming on. The pill is supposed to work within 15 minutes. I waited 45 minutes, the symptoms were the same (not worse, interestingly), so I took my hydromorph. Admittedly, it was a week from hell, and things were kind of bad.

I decided if it was going to work at all, I would require 2 or 3 pills. So two days later, I took three pills when I felt symptoms at 3 PM. I also took a hot bath (d-uh), so I don't know what stopped the symptoms. By 3:30 PM I was having stomach pains. By 5 PM they were severe, by 6 PM I was also having WED symptoms. The symptoms went away by midnight after my usual meds, the gut pain continued for a day and a half. It might have had nothing to do with the RL Solution pills, but I thought it might, since I took them on an empty stomach and they contain tumeric. Not that I know if tumeric can upset the stomach. Also not sure why the pain would last 1.5 days if it was caused by something I ingested, like tumeric - maybe because, for 4-5 days previously and for about a day afterward, I had been having pains whenever I ate, and one bout of acid. So my guts were messed up anyway, which might have prolonged the effects of the tumeric.

Or maybe it was all a big coincidence.

So one pill has no noticeable effect. I will have to try 2 or 3 next time again, and naturally am a little leery. I am traveling soon, so I will have to wait 3 weeks til I get back.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

pjmccoy1
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Re: amino acids...

Post by pjmccoy1 »

I've tried one pill twice. First night took 2.5 hrs. after 5 p.m. Horizant. Didn't notice anything really. Didn't take second night. Took one this mrng and my stomach a little uneasy queasy this mrng. I don't usually have RLS issus in the a.m. butt this mrng legs felt uneasy. I give up. Also went to natural health food store and am trying a liver cleanse (imagine that liver issues) of course with all the Rx's been taken for years. Anyhow, I am leery of stuff off internet because we're trusting not FDA approved treatments. I notice Beth?? periodically posts the Augmentation link.... not sure who Beth is or what that's about unless it's to remind us all that we need to stick with pharmaceutical treatments and just keep changing to another one because of augmentation and they we build up resistance, immunity or whatever. Fortunately, my RLS isn't as bad as it has been and it's more problematic from the 6p.m. - 10 p.m. period when I'm in a siting/relaxing state on sofa after work. If I look at computer it helps because of refocusing attention somewhere else but sometimes that doesn't help either. But I do have RLS keep me from going to sleep or wake me up in the night. Clonazepam is what I'm taking now at 10 p.m. (1 mg) largest dose at one time I've ever taken in 9 years. The hopeless part about reading on this website and seeing how much worse the WED/RLS is for many keeping them up all night and are on pain med's and a litany of med's. Then you read it gets worse as you get older. I've had this since 42 (now 51) and the thought of living with this and it getting worse as I get older and still having it at 90 is terrifying. How do you keep from becoming hopeless and FEAR the future. Not sure if I should read any more on the internet because you see how horrific this syndrome is and no one has the answers. I am not taking any pain med's refused when doctor suggested added pain med's which I don't have pain from RLS (at least not yet) and other suggestion was adding Lyrica. I'm not doing it until last resort. Thanks for your info. Thinking I'll dump this freebie. It's probably got talcum powder in the capsules or sugar pill.... Trying not to be hopeless
PJ, Heaven Bound

Chipmunk
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Re: amino acids...

Post by Chipmunk »

Pam, don't forget that people whose WED is well-treated don't post on this website! Most people find a treatment plan that works for them. :-)
Tracy

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

ViewsAskew
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Re: amino acids...

Post by ViewsAskew »

Hi Pam (sorry - used the wrong name the first time....),

As an organization that provides what we hope is honest and true information, the only thing we can go by is science. The main problem with non-pharma treatments is that there is little money in them (because patents are hard to come by), so no one researches them. We can't say if things work, because we can't see any proof. We see people come here and spend a lot of time and money on non-pharma treatments. They work for some and not for many others. We have no idea if they really work, why they work, how they work, and so on. All we can do is post anecdotal evidence.

We wish we knew more. We can, however, point to research about pharma treatments. We're not pushing anyone to use them. We just know what tends to work and what doesn't.

I don't have pain with my WED, yet I use an opioid. The reason isn't to kill the pain. Reaseach has shown that our endogenous opioid system is likely involved in RLS/WED. It's likely because of this that opioids work. We don't need large quantities, in most cases, and studies of people who take these medications also show that they have a lower rate of addiction and other issues than other people. That also tends to reinforce that this is something helpful to our bodies, not harmful.

There are, however, many other types of drugs you can take. I absolutely understand not wanting to take anything and then to only take things that won't harm me. But, even if non-pharma treatments worked, I have no idea if they will harm me. Many natural substances can cause death, liver issues, and much more. So, I feel I have few options.

Each of us has to make a decision about what is best for us and balance what is important. To me - and just me - being able to work and function trumps not taking medication. I fought taking medication for 20 years. Finally, unable to work, I chose medication. Now I can work. It's not quite that easy and my life has been difficult getting here, but I'm sometimes working 40 hours a week, something I haven't done in ten years. That's an accomplishment, to me.

In the augmentation thread, Beth (one of our moderators) posts to let people know what the science is saying. She isn't pushing drugs or opioids. As far as the doctors know, there is only one way to resolve augmentation. That is to take opioids for a few weeks, then reassess. The person may not need them for a long time and may choose to go another route.

This is a very difficult disease to have. Studies show our quality of life is as poor, or more poor, than any other chronic illness, including diabetes. The only way I know how to navigate that and feel a bit better is to know as much as I can. This site helps me because it tries to present both anecdotal evidence along with hard science evidence. That lets me feel more in control because at least I know what my options are and that if those options work, what options might.

A great place to start is the sticky post in my signature. Welcome to the site. I hope you find information and support that helps.
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.

badnights
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Re: amino acids...

Post by badnights »

Ann - did you mean to say Hi Pam in the above post?
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
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Re: amino acids...

Post by ViewsAskew »

Yup - and I edited it then saw your post, lol.
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.

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