I THINK I HAVE IT FIGURED OUT!!!

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.]
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Jar
Posts: 9
Joined: Thu May 07, 2020 9:24 pm

I THINK I HAVE IT FIGURED OUT!!!

Post by Jar »

As most of you know I have been around for a long time. I come and go and years later I am back. Well I am back to tell you all what might be good for me.

I have been on Mirapex 3mg's three times a day for years. It worked. Then all at once not long ago my legs went crazy and I was getting maybe two hours sleep a day.

I had my B12 checked twice and it was 204 pg/ml. Standard range is 239 - 931. I am on b12 pills but not shots. Ferritin was 24.8 ng/ml. Standard is 10.0 - 130.0 ng/ml. Iron is 90 n/g/dl. Standard is 37 - 170. So I guess the B12 is low.

I asked them to put me back on Clonazepam for sleep and he did. He also started me on Gabapentin 100 's two capsules a night. I take one early and one when I go to bed. I still get restless legs but not as often or as bad.

I got an appointment with an Neurologist on Sept 02 and I know that's a ways off but I will take. I don't ever want to go through what I did two weeks ago. As things go on I will try to keep everyone informed if you all are interested.

Take care, be safe and Happy 4th., Stitch Jar Jeannie

When I came here my name was Stitch and I think it still is or JAR.

Polar Bear
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Location: N. Ireland

Re: I THINK I HAVE IT FIGURED OUT!!!

Post by Polar Bear »

Jar, Are you still taking your Mirapex?
I am falling asleep and fighting to keep my eyes open but Just want to say that your dosage of Mirapex is way too high.... Like way over 9 times the accepted daily dose.
You Will have to deal with this.

Your name is Jar :)
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

Jar
Posts: 9
Joined: Thu May 07, 2020 9:24 pm

Re: I THINK I HAVE IT FIGURED OUT!!!

Post by Jar »

I think I have forgotten how to answer you. But the I am taking 1/2 mirapex in the morning and 1/2 in the evening. Only 1mg a day.

Polar Bear
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Location: N. Ireland

Re: I THINK I HAVE IT FIGURED OUT!!!

Post by Polar Bear »

"""I have been on Mirapex 3mg's three times a day for years"""
Jar, the above quote from your post is what I read and considered that you were on 3mg x 3 times a day = 9mg.
So you are no longer on this dosage.

Be careful though, 1mg daily is the top end for Mirapex dosage.

It's great that your restless legs are not as bad as they were.
We'd love to hear how you get on with your Neurologist appointment on 2 September, please do keep us updated.

EDIT::
The max daily dose for mirapex should read .5mg and NOT 1mg.
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

Jar
Posts: 9
Joined: Thu May 07, 2020 9:24 pm

Re: I THINK I HAVE IT FIGURED OUT!!!

Post by Jar »

Polar Bear, I take 1mg cut in half in the morning and the other half at night. They wanted me on more but i said no. My name is Jeannie and my whole spells JAR. My chat name is Xstitchinlady. the X is for counted cross stitching. I also go by Stitch, Stitchie etc. Thank you for your concern and help. When I see this new Doctor in September. Will keep you posted. I did see your email. It's good to be back. Thank you so much Jeannie or Stitch

Polar Bear
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Re: I THINK I HAVE IT FIGURED OUT!!!

Post by Polar Bear »

Hi Stitch - Well done on not taking a higher dose of mirapex when offered.
It won't be long until September :)
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

Jar
Posts: 9
Joined: Thu May 07, 2020 9:24 pm

Re: I THINK I HAVE IT FIGURED OUT!!!

Post by Jar »

Hi Polar Bear, Do you have a name or just go by Polar Bear? My night time meds are working out good and I am sleeping almost 7 hours now. I had two really bad evenings into all night. Smoking seems to help and I begged Doug to buy some. I smoked for a week and I didn't like it that much. The next week the same thing happened again and he got me more but these were really not good but still smoked the whole pack. So far I am finished with them. When I have a really bad night the smoking seems to calm me down. Things seem to be working out good.

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

Re: I THINK I HAVE IT FIGURED OUT!!!

Post by Polar Bear »

My user name is Polar Bear.
If you look at the bottom of my posts you will see my name is Betty.

Just to update and make a correction. In a previous post I stated that the max daily dose for mirapex is 1mg. That should read .5mg.
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

Jar
Posts: 9
Joined: Thu May 07, 2020 9:24 pm

Re: I THINK I HAVE IT FIGURED OUT!!!

Post by Jar »

Hi Everyone and I hope all is doing well,

This is Stitch and it will be the name I use for now on. I thought I had it figured out until I went to see that new doctor yesterday. What a let down. She didn't do anything that I didn't already know and some that I knew and she didn't.
I was telling all about my legs and how long I have had RLS (all my life) and wasn't until 1985 that I found out what it was. I told her I had been on Clonazepan since 1985. I did get myself off of it once and was taking over the counter, not good. I was given something else by the doctor and that didn't work. I got back on the Clonazepan but I had to take a five day holiday every week. That didn't work for me. And way she did nothing for me but changed the Mrapex around.

Let me tell you what I have been doing. When my legs got so bad I begged for some cigarettes. I have not smoked for over ten years and my husband can't say no to me. I smoked four packs and stopped that but they did help. When I went to my doctor he put me on Gabapentin 100mg to take one in the early evening and then the other when I go to bed and that worked while taking Mrapex. So right now things are good but the new doctor didn't do anything. I will call my doctor next week and get more of my sleeping pills. I don't know why they won't give old people (I am 84) something to sleep.

I have been keeping busy by knitting, knitting and knitting. Can't go anywhere and the doctors don't want to see you. I will be glad when this year is over. I would send a picture of the Christmas stocking I did but I have never seen pictures here. I have knitted over 40 pf them since 1989 and this was my last one.

Take care everyone and I will be glad when this year is over and I don't have to wear a mask any more.

badnights
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Re: I THINK I HAVE IT FIGURED OUT!!!

Post by badnights »

Ah too bad. Why do we get our hopes up. Just because she's a neurologist doesn't mean she knows anything about WED/RLS (even though it's a neurological disorder). Maybe you intrigued her and she will read up on it.

What exactly did she recommend for you? I think she needs to address the fact that your current medication doesn't control your symptoms, and that dopamine-type medications are not the answer because they cause augmentation. What has she recommended? Did she set up a follow-up appointment to see if what she recommended is working? If not, could you call and request one? Or do you have to go thru your regular doctor again? If so, maybe start the process.

P.S. The cigarettes will lead to grief you don't need, you know that.
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.

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