Need Support

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
Post Reply
ViewsAskew
Moderator
Posts: 16259
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Need Support

Post by ViewsAskew »

I think senna is OK to use. There is some research about some types not being good to use regularly, if I remember correctly.

Happy 2014 to you, too.
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.

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

thanks so much Ann:)

Polar Bear
Moderator
Posts: 8010
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Need Support

Post by Polar Bear »

I would use senna occasionally without ill effect. But I use a gentle over the counter brand.
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

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

Again ...Thanks Polar Bear!
Yes; agreed..occasionally as you stated.

Well like I said so far so ok

I don't know if I am augmenting. Perhaps?? As I said I do get some WED activity in the late afternoon prior to 6pm (that's when I take my mirapex) and even some activity afterwards. (as it takes time to effect)
But!! I usually just do some floor exercises and it's ok.

Just hoping and Praying it stays like this and doesn't worsen.

Thanks to all for your input.

Sincerely,
Oceanwalker

sue sue
Posts: 1
Joined: Thu Jan 09, 2014 8:11 am

Re: Need Support

Post by sue sue »

Hi oceanwalker, I hope that you see this note from me. I know how awful RLS is. I have had it BIG TIME for quite a few years. I have been on mirapex/pramipexole for a long, long, time. I take 2 mg each evening. It has helped. Side affact is a very dry mouth in the morning. Also, the eating has been a problem. It has been very depressing. BUT, I just found and have tried for the last three months something called Calm Legs. IT IS WONDERFUL. I take one pill just after dinner, all vit and minerals. I believe that those pills have helped and I am going to start taking less of the mirapex and just see if I can get along on the Calm Legs alone. The company is Biomedical Research Laboratiories. Three bottles, each bottle lasting one month, costs $49.95. My mirapex costs me $10.00 for three months with insurance. Otherwise the mirapex would cost a little over $300.00 for three months without insurance. I would much rather take a vit and mineral than a perscription drug. Look it up on the computer. Hope this information helps.

Polar Bear
Moderator
Posts: 8010
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Need Support

Post by Polar Bear »

Hi sue sue - So sorry that you are suffering with this condition. I think I have heard of Calm Legs before and it is great that it is helping you with your symptoms. It will be interesting to learn if any other members have tried it and with what success.

With regard to your mirapex I would be concerned at the dosage you are taking. Someone will correct me if necessary but I believe that more recently the max dosage of mirapex is considered to be only .25mg. It is one of the DA drugs that are prone to cause augmentation and especially such a high dose as you are taking. Also have you had your ferritin serum level checked, it needs to be up at 100 when using a DA, never mind that a doctor/lab is likely to tell you that as low as 20 is normal.
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

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

I have heard of the calm legs Sue Sue and ty I will try it:)

Now I just had my iron checked and it's 10 :( so very very low indeed.

I am taking a lot of iron supplements

Totally understand the *food binges* Sue Sue I too have these :( and most depressing .

Polar Bear I totally understand your concern.

I took .25 for a long time and now I use .25 and a half of .25 so is this too much? I had no clue.

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

okay Sue Sue i have Restful Legs (product)
is this the same as the Calm Legs?? thank you

Rustsmith
Moderator
Posts: 5150
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Need Support

Post by Rustsmith »

Oceanwalker, I am like you in that I am currently taking 1.5 tablets of .25 mg pramipexole. The current maximum recommended dosage for pramipexole for WED is 0.50 mg/day, so we are not there yet. However, you will need to keep in mind that the maximum approved dosage is 4 mg for other treatments (such as Parkinsons). I have already had one doctor this week tell me that I had a long way up to go before I needed to worry about changing medications. I told her she was incorrect with respect to WED, but didn't get into it any further since she was not the one treating my WED.

As for the iron supplements, your 10 is far lower than my 40, but I have also been on iron supplements for about six weeks. Have you seen the recommendations that iron supplements should be taken along with at least 250 mg of vitamin C and preferably on an empty stomach to improve adsorption? I have never had a sensitive stomach, but the iron pills have been pushing things for me. Some of the recommendations talk about taking them with food even though this reduces the benefit.

As low as you are, you might want to also ask about an iron infusion. Some of the others can tell you more, but even this would require a bit of initiative on your part to make certain that it is done correctly for WED.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

hello Rustsmith and ty for your helpful reply.

Well I can tell you that I would never ever receive an infusion.
Things seem different here in Canada with the docotors.
They just don't understand.
Honestly I have a good doc but I know an infusion is out of the Q

He even stated that 10 is low but 20 is just fine for me and I am no different having WED's than any other person.

Sometimes I am very upset over all of this. I cannot just zap change docs in same clinic and who knows what I would get in another clinic. Not worth the risk.

I may need to see Dr B ???? I thought I was doing ok...........but I don't know anymore.

Thank you so very much.

And I forgot to say Welcome to you Sue Sue:) and ty for your help.

ViewsAskew
Moderator
Posts: 16259
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Need Support

Post by ViewsAskew »

Per trying non-pharm when your symptoms are severe can be frustrating.

Sometimes non-pharm options help a bit. I've rarely (maybe never?) seen when someone goes from regulate pharm to complete non-pharm. I don't mean to something like kratom, which is a drug, just I consider non-regulated pharm. Vitamins, minerals, and similar DO help some people. They are wonderful when you have a deficiency. Many of us do not, however, and it's sooooo disheartening to try and try and try and feel that nothing helps.

State of mind is the most important thing when trying non-pharm. Have few hopes going in and you won't be so let down if it doesn't. And, if it does? Remember that the true test is time. If you feel that way in 30-60 days, then you may have a winner. Even then, things do stop working for whatever reason. There is never a cure and forever is something we just can't have in our vocabularies.

Golly, that sounds like Debbie Downer! I mean it to sound like Logical Lizzie or Realistic Rochelle. :-).
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
Moderator
Posts: 5870
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Need Support

Post by badnights »

Well I can tell you that I would never ever receive an infusion.
Things seem different here in Canada with the docotors.
They just don't understand.
Honestly I have a good doc but I know an infusion is out of the Q

He even stated that 10 is low but 20 is just fine for me and I am no different having WED's than any other person.

Sometimes I am very upset over all of this. I cannot just zap change docs in same clinic and who knows what I would get in another clinic. Not worth the risk.
It's not Canada, love, it's doctors all over; some of them know about WED, and some don't. Some feel the need to tell you things in a confident and very assured way, becaue htey think you need support and confidence, even when they are not sure themselves. I had quite an intelligent and well-informed internal medicine specialist diagnose my WED, and prescribe me Requip, but he told me I could stop taking iron because that was silly and my iron was fine. It was only 23 ng so he was quite wrong.

That same doctor read my information on augmentation, read an email Dr B had sent me, and gradually learned about the problems that can occur when treating WED, I hope. He moved away before I could benefit. His name is John Morse and he moved to Coquitlam BC I think! Maybe he's close to you.

I am going to seek iron infusion in a few months. I am not regarding it as out of the question. I am regarding it as an exercise in educating a lot of people, and learning how to sustain hope. :) I will definitely post about it if it happens.
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.

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

Hello Beth and thanks so much for the reply.
Oh re: the infusion..I only stated that cos I doubted the fact that I would get one. That's why the word "out of the Q"
lol I think it's great!! I had iron infusions when I was a teenager and again when I was in my 20's ..so yes !!! I would take one in a heartbeat. Only meant that no doctor here would give me one.

Well it's interesting to know that the doc's are all ill educated with the WED's.

Oh the doc you mentioned? is he okay? I was confused bout what you stated.

I wish to thank (forgot who advised me ..you ? Polar Bear? or Ann or ? anyways I was put in touch with a wonderful woman in Vancouver who states she's got an amazing doc who treats her WED's ....so we shall be chatting via phone soon. Thank you for all that information!!!!! I sure do appreciate it.

Without this amazing site I would be totally lost. So I wish to thank all :))

Plus I will be happy to read your post re: your infusion Beth:)

Sincerely,
OceanWalker PS: yes; the iron's a pain to take and hard on my system :( Hoping and Praying it will work.

ViewsAskew
Moderator
Posts: 16259
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Need Support

Post by ViewsAskew »

So glad you got in touch with someone who is happy with her doctor. That's what each of us needs - the rest isn't so bad when you have a doctor who will go out of his/her way to help.
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.

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

Thanks Ann and I will keep you all posted.

I always like your Quote ..it's so so true and cool! Take what you nee, leave the rest.

And yes..we all need a doctor that understands us and yes- goes out of his/her way to help. It's so so important and what a wonderful feeling.

OceanWalker

Post Reply