Update on what's helped my partner with all day RLS

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.
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geekgirl
Posts: 13
Joined: Wed Sep 16, 2009 4:15 pm

Update on what's helped my partner with all day RLS

Post by geekgirl »

Hi All-- You were so helpful and supportive a couple months ago when my partner was experiencing HORRIBLE all over, all day RLS.

We went to a sleep doctor/RLS 'expert' who started out very intent on helping. She prescribed Requip, but unfortunately that made the twitching that comes with the RLS even worse. Requip basically made it 100x worse, if that's possible. So when we called and told the doctor that, she recommended trying Clonazepam. That actually worked SO well! She'd take a half in the morning to combat the day time itching, and then 1 at night to help sleep. She could function and do normal things again-- it was fantastic. For some reason, though, that doctor freaked out about her taking it during the day-- although we told her the RLS is also during the day. She suggested a shrink (??!!) and refused to renew the prescription! So, even though she's known as an expert in the field, we cancelled the upcoming appointment.

During all of this my partner has been seeing a fantastic DO and is being treated for Stage 3 adrenal fatigue (not surprising given that her sleep patterns are so off) and other stuff. We told the doctor about the experience at the sleep clinic, and told her that the clonazepam was the only thing helping. But, the DO explained that medication wasn't part of what she usually prescribed to people and she wasn't comfortable using it long term. She's more about SOLVING a problem, finding the source, than throwing pharmaceutical at it. She gave us a month's prescription just to help in the meantime, and ordered something called Calm CP from a company called NeuroScience. She told her to start out taking it an hour before bed, to see if it at least helped the nighttime RLS. AND IT DID. Sleeping through the night! No itching!!

So now she takes 1 in the daytime if she starts to have RLS, and 3 an hour before bed. And NO RLS. It's like a freakin' miracle. She ran out of it last week and it took a couple days for them to get it in-- those 3 days she was up all night with RLS again, and had it during the day. Now we have 4 bottles of the stuff in the house so we won't run out again by accident. It's like $50 for 60 pills, but it's SO worth it.

Anyway-- the doctor is even impressed this works so well. She said it mimics what the Clonazepam does. I'd seriously buy stock in the company if I could. I know it might not work for everyone, but it might be worth a try for some of you sufferers out there! I think you have to order it through a doctor's office, but if you can find a MD or a DO who treats adrenal fatigue, they might be able to help. Here's the link to the stuff: https://www.neurorelief.com/index.php?p ... 448&pid=0#

geekgirl
Posts: 13
Joined: Wed Sep 16, 2009 4:15 pm

Re: Update on what's helped my partner with all day RLS

Post by geekgirl »

Just reread this and I don't want to sound like I am shilling for this company-- I'm totally NOT! I'm just such a fan, I feel like calling them and telling them this stuff helps RLS. But if I do, they might charge even more for it :)

jul2873
Posts: 445
Joined: Thu Nov 15, 2012 7:32 pm

Re: Update on what's helped my partner with all day RLS

Post by jul2873 »

That's great that your partner has found something that works so well. And it's great that she has a partner like you who is so involved in her care :)

FYI It looks like Amazon has the same product without the need for a script: http://www.amazon.com/Neuroscience-Calm ... ds=Calm+CP

Kratom is working very well for me at the moment, but it's great to know about options. Thank you so much for posting. I will definitely bookmark this product.

badnights
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Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Update on what's helped my partner with all day RLS

Post by badnights »

Your partner has some sort of adrenal insufficiency, so perhaps her WED is secondary to that. The Calm CP is a plant extract that reduces cortisol levels by inhibiting the conversion of cortisone to cortisol. So perhaps it would work for anyone whose WED is secondary to adrenal dysfunction. Funny, when I first sought help for WED, the first thing the internist tested me for, on hearing my symptoms, was adrenal insufficiency (but I was ok on that front).

The manufacturers have added taurine to the extract, which I recognize because it's on a list of things I want to try, but I can't remember why. It was on this board somewhere lol....

My list:
* taurine (forget why I wanted to try this, but I see on the Calm CP website, it's a GABA receptor agonist)
* beta-alanine + arginine (this was the "remedy" that got removed by the poster a few months after he posted it)
EDIT: - I actually had his deleted recipe written down too, so I've added it here: viewtopic.php?f=1&t=8129
* citicoline (not for WED per se, but for the memory issues / cognitive loss that seem to have arisen from it in me)

I should do a search to remember why I wanted to try taurine...
EDIT a number of posts here talk about success with a supplement that contains it, and one post recommends against it, so I won't link to anthing
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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