Magnesium Salts...your experience??

Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS/WED, 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.
Betty/WV
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Location: West Virginia, Wild and Wonderful

Re: Magnesium Salts...your experience??

Postby Betty/WV » Tue Jan 03, 2012 7:35 pm

I've heard all these storys about the soap under the sheets, magnesium, certain diets and on and on. People will swear by these things. I always think as someone else mentioned, that these people don't really have WED/RLS. After 45 or more years with this disgusting, life ruining disease I have become quite skeptical of all these cures. :roll: Its a neurological disease, what would a bar of soap have to do with curing it. I have tried everything imaginable and the only thing that works are drugs, right now I'm on mirapex. And it works pretty good, most of the time, not perfect but I'm better in some ways than I was before.

A couple of odd things that happen to me that I wanted to mention. I know we are all so different, and I wondered if any one had similar experiences. When I sit down at my desk to balance my checkbook, I will be free of the ugly WED/RLS. And on the other hand, it seems as soon as I sit down at the computer, here IT comes. Sometimes IT will stop. Could it be the chairs.

I to have such a fear of the mirapex not doing the job anymore. Or worse yet, augmenting and making IT worse. I walk with a cane now, and fear that maybe the time will come when the cane won't be enough and I won't be able to take care of myself. I only have me and my husband, who will be 80 soon. I have a child and grandchildren, but they are so busy with their lives would they want to be stuck with me. So often the children won't help out. I see it all the time. My kids are good to me and my husband, but having to care for an elder is a big responsibility.

Can you tell I'm venting. When I have a long post thats what is happeniing.

One more thing, I try to let friends know what WED/RLS is, because if I mention it they look at me like I'm nuts. So I'm trying to educate them. My husband after all these years finally saw first hand what IT does to me. Usually he would be sound a sleep when I was walking the floors all night. We drove to Florida a few years ago, and don't you know I was hit with IT. (someone mentioned calling WED/RLS IT. I like that, so I stole the idea) So for a few hundred miles, I had my feet on the dash board, kicking my legs, moaning and groaning. We stopped often then finally stopped for the night. So he began to understand what I was going through. Another example, my sister was in the hospital and they gave her something that made her have IT. The railing was up on her bed, and IT hit her, she started yelling for someone to get the rails down so she could get up. At once she realized that this was what I had, She actually paniced, so after that she was more understanding.

Forgive me for this long post. I enjoy reading all your posts so I hope I haven't bored you. Take care all my fellow sufferers. :?

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

ViewsAskew
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Re: Magnesium Salts...your experience??

Postby ViewsAskew » Tue Jan 03, 2012 8:04 pm

If something isn't working, it isn't working. I found I couldn't take methadone daily. It just doesn't work for me.

And that, I think, is one of the other terrifically hard issues about WED. Someone who can manage it by going to bed (my sister), doesn't understand what it means not to have that work. Someone who doesn't have pain doesn't understand pain. Someone for whom Mirapex has worked at .125 mg for 8 years doesn't understand augmentation.

To be compassionate about this disease, you have to be willing to let go of, "Well, this works for me, so it should work for you," and instead adopt, "I trust that you know whether this is working or not and that if it's not working, even if it works for me, I hope that you'll find what does work for you." It's taken me years to get to the place where I *think* I get this statement. I've thought I've gotten it in the past, only to realize I was still holding on to beliefs that were limiting, but I've always believed that this is the most helpful perspective. I love this board so much because the vast majority of the members get this and embody this.

I don't think anyone here is judging you - at least not deliberately, and hopefully not at all. We just hope you find a happy beginning with something that works for you.
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: Magnesium Salts...your experience??

Postby Polar Bear » Tue Jan 03, 2012 9:17 pm

Betty/WV - I think your post of earlier is an excellent story of how we all feel and how we have all been
at some time or another.
Never apologise for a long post, and you will never bore us.

We are all treading a journey - and hoping......
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

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Re: Magnesium Salts...your experience??

Postby Betty/WV » Tue Jan 03, 2012 11:03 pm

I hope you all didn't think I was saying, in my post, "that this works for me, so it should work for y ou."After being on this site for several years, I think since 2004. I read everything I could find on WED/RLS. I learned so much from all you dear people. I didn't even know what was wrong with me for such a long time. Then my daughter found an article called "night walkers". She said to me "Mom, read this, this is you". Now, what was wrong with me had a name. And I started my journey finding out all I could. One night, as I was in the middle of a horrible espisode, I stood at the computer, just searching the web and guess what I found,rls.org.!!

I learned, immediately,that we are all different in ways, and yet all the same in ways. For instance, sitting in a bath tub full of hot water, at times, would relieve my WED/RLS. While others on this site got relief from cold water.

I don't know if doctors would still do this, but they used to give people "sugar pills" and the patient would feel the "pills"
were helping them. Although, there was no reason they would help anything. So, it must have been the power of suggestion. The mind. So if you put soap under your sheets, and they help you--great. Keep doing it. Anything that helps is a positive. I tried it, but it didn't work for me. So, it must be the equivilent to the "sugar pill." A bar of soap, if it worked for me, would be alot better than the expensive meds that I take. No side effects either.

I wouldn't judge anyone for what they decide to do. I love being a part of this site. It has helped me so much, when the doctors would just "scratch their heads". And I bet since 2004, I haven't missed many days checking in.

Wish you all a restful day, and a peacefull night of sleep.

Betty/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Magnesium Salts...your experience??

Postby ViewsAskew » Wed Jan 04, 2012 3:03 am

Betty/WV wrote:I hope you all didn't think I was saying, in my post, "that this works for me, so it should work for you."

Betty/WV



Oh, no, Betty! I was responding to Doety's post on the prior page. Sorry - I should have quoted it :oops:
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.

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Re: Magnesium Salts...your experience??

Postby Betty/WV » Wed Jan 04, 2012 3:27 am

no problem, I wondered when I saw your post right after mine. Sorry, I got mixed up.
BETTY/WV :roll:
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

badnights
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Re: Magnesium Salts...your experience??

Postby badnights » Wed Jan 04, 2012 9:42 am

I think you have to do it, because you feel so strongly about it and it's not like you haven't researched it and don't know what you're getting into. Sometimes you have to be true to your gut feelings.

Part of me is just beginning to wish I could find out what I would be like without the drugs. Maybe just for a day or two.... But I can't get to the day or two without weeks of opioid withdrawal. So I'm not yet anywhere near ready to do what you're doing, and may never be.What are you going to try to control the RLS with, while you withdraw from the methadone?
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.

cornelia

Re: Magnesium Salts...your experience??

Postby cornelia » Wed Jan 04, 2012 10:43 am

Betty, I think that when you balance your checkbook you have to think hard (harder than just being on the computer) and when you do that you are intensively using your brains, which means less RLS. At least, that;s my opinion. For me, writing in English is hard thinking and that means no RLS until I have finshed.

Corrie

Wayne
Posts: 179
Joined: Tue Feb 17, 2009 1:50 am
Location: Virginia (USA)

Re: Magnesium Salts...your experience??

Postby Wayne » Fri Jan 06, 2012 11:06 pm

doety wrote:Okay, clonazepam down. I know some people think I'm crazy for trying to get off Methadone -- even Dr. B questioned that. Some said why don't I just take it the rest of my life. But it presents many problems for me, even though it helps my symptoms for a few hours. And I think my body wants more and more of it. So I'll try to get off that and see what happens. I'm assured by all docs that the RLS will of course still be there and it will be bad. If that's true, I hope to try something else that doesn't give me so many problems.


I don't know your whole situation doety, but here's what I'm doing now.

I no longer take any meds during daytime hours. So no drowsy, or lethargy like I was previously experiencing taking meds through the day. RLS never came under complete control anyway and I felt like a zombie through part of the day. So now I just ignore/endure daytime symptoms and remain awake and alert throughout the day. It's not bothering me as much as when I first got RLS (maybe I'm just getting used to it? mind over matter? whatever, I can deal with it better now).

I am usually home by early evening, so I will then take a half of a 0.5mg Clonazepam (so 0.25mg) which eases the RLS just enough to sit still a relax a bit, but won't put me to sleep within an hour. I will take ONE 300mg gabapentin just before I go to bed. I will usually drift off and sleep anywhere from 2-4 hours (on my stomach, if you remember my thread about that) After waking up, I will take a 0.5 clonazepam and sleep through the rest of the night.

I was tired of being a walking zombie too, that's why I dropped the daytime meds. Maybe you can find that right combination also.

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Re: Magnesium Salts...your experience??

Postby Betty/WV » Fri Jan 06, 2012 11:56 pm

cornelia wrote:Betty, I think that when you balance your checkbook you have to think hard (harder than just being on the computer) and when you do that you are intensively using your brains, which means less RLS. At least, that;s my opinion. For me, writing in English is hard thinking and that means no RLS until I have finshed.

Corrie


Corrie: I think you are right about the "thinking hard". Because if I get overly tired, depressed, stressed etc. etc. the WED/RLS kicks in. So many things can make it worse. And being on the computer at times make the WED/RLS worse. This is such a complicated disease, someone said recently that they didn't think anyone will ever figure it out. And I sort of agree. :(

Wish you well Corrie. It seems we are all in this together. And I'm so grateful to have people I can vent to and understands what I'm dealing with. Before I found this site, no one understood and I felt so alone. I thought I was going crazy.
It really helps to pour it all out to ones who have gone through the same things or very similar.

Thanks for your input. Take care.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

doety
Posts: 486
Joined: Fri Sep 15, 2006 4:25 pm

Re: Magnesium Salts...your experience??

Postby doety » Thu Nov 15, 2012 2:58 pm

I haven't looked at this thread in a while -- it's been almost a year.
Wayne*** You may already know this, but many of the meds we take last far longer than the night. Clonazepam stays with us for a long time. I'm glad it's working for you, and I know it's one of the first meds docs were giving out for RLS quite a while back, but I don't think most docs recommend it right now. I'm sure our leaders will tell me if I'm wrong!!

badnights
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Re: Magnesium Salts...your experience??

Postby badnights » Sat Nov 17, 2012 3:21 am

you're right doety, clonmazepam is not a drug of choice for RLS any more. But neither would it normally be taken away from anyone if it's working for that person.

It's got a 40-hr half life, so almost two days later it's only half gone. I don't understand why everyone taking it doesn't turn into a zombie eventually, because that math clearly indicates that it builds up faster than it breaks down if you take it every day. But clearly it works for some people ! I suspect the half-life is different in different people.
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.

Wayne
Posts: 179
Joined: Tue Feb 17, 2009 1:50 am
Location: Virginia (USA)

Re: Magnesium Salts...your experience??

Postby Wayne » Sun Dec 16, 2012 9:28 pm

badnights wrote:you're right doety, clonmazepam is not a drug of choice for RLS any more. But neither would it normally be taken away from anyone if it's working for that person.

It's got a 40-hr half life, so almost two days later it's only half gone. I don't understand why everyone taking it doesn't turn into a zombie eventually, because that math clearly indicates that it builds up faster than it breaks down if you take it every day. But clearly it works for some people ! I suspect the half-life is different in different people.


I have a very efficient metabolism :)

The Clonmazepam doesn't make me into a zombie, just calm and drowsy. The calm is great for early evening and the drowsy is perfect at bedtime.

On the other hand when I was on 900mg of neurontin per day (3 doses) I did feel like a walking zombie up through to early afternoon, for little or no relief. That's why I cut out the daytime doses.

Right now I'm in a good sleep-wake pattern. Don't want to try and fix it till it breaks you know.

peanut1
Posts: 309
Joined: Sat Jun 04, 2011 8:06 am

Re: Magnesium Salts...your experience??

Postby peanut1 » Fri Dec 21, 2012 6:54 pm

Yes, I have a gal telling me the same thing that everyone is magnesium deficient and these salts (from Ancient minerals) have done miracles. I was glad to see your post rather than invest money and time in ordering the special magnesium salts.

peanut1
Posts: 309
Joined: Sat Jun 04, 2011 8:06 am

Re: Magnesium Salts...your experience??

Postby peanut1 » Fri Dec 21, 2012 6:56 pm

PS I also take clonazepam part time and it works okay, but I can only take it on a part time basis or I need more and more and then I feel like a complete zombie. More tired with that than the bloody RLS!!


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