Attempting to get off Ropinirole - again

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Yankiwi
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Re: Attempting to get off Ropinirole - again

Post by Yankiwi »

I totally agree. We need to push for ourselves. I tell my friends they need to be aggressive when they can't get an appointment or nobody phones or mails results of tests.

Polar Bear
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Location: N. Ireland

Re: Attempting to get off Ropinirole - again

Post by Polar Bear »

Yankiwi - Absolutely. Although there is a fine line between being firm, seeking to be taken seriously - and risk being considered 'difficult'. Still, we must push.
As for getting test results, I only get a telephone call if there is a problem. To find out results for our own information it takes a phone call and after actually getting through going into a queue of 5 for possibly 20 minutes. I do this because I want to know what my ferritin level is, what my cholesterol is, what my blood sugars are.
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

badnights
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Location: Northwest Territories, Canada

Re: Attempting to get off Ropinirole - again

Post by badnights »

That tries one's patience. I only have to deal with 5-10 minutes and that's bad enough.
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.

Polar Bear
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Re: Attempting to get off Ropinirole - again

Post by Polar Bear »

Big surprise today. I got a phone call from the local agent for the Cpap provider. Agent was 20 minutes away and would it be convenient to call with my Cpap.
Was it convenient !!!!! Half an hour he is in our home and we are having coffee. I had a trial with it, saw how it worked and how to read the data. My husband was with us so he knew how it worked. Tonight I am wearing it while watching tv to become familiar and all seems good.
Tonight will be interesting.
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

Rustsmith
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Re: Attempting to get off Ropinirole - again

Post by Rustsmith »

PB, I am so glad that you finally made it through the process and have your machine. They may have explained this, but it will take several nights to become comfortable with the mask. And most CPAP users end up going through several mask designs before finding one that they like. So if the mask feels uncomfortable one you use it with a pillow, ask the provider to let you try another design.
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.

Polar Bear
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Re: Attempting to get off Ropinirole - again

Post by Polar Bear »

I am very happy to say that last night, my first on my cpap automatic machine, appears to have been very successful.
It was comfortable. Data shows I had 7.7 hours of therapy but this includes an hour where I was familiarizing myself before bed. I could possibly have slept longer but was wakened by the phone. I was up once for an hour much less than usual and wonder if this was because when wearing the mask I felt so much better in my breathing and was looking forward to using it again.
The initial sleep test showed 20 events per hour and last night's reading was 1.9 per hour. Incredible.
The pressure is set to start at 4 and data showed 11.
Periodic sleep was 4 , not exactly sure what that means.
As it's a nose mask I didn't use the humidifier.
Big bonus for my husband is that I didn't snore !!

I am feeling very positive today and hope there are no unseen hiccups.
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

ViewsAskew
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Location: Los Angeles

Re: Attempting to get off Ropinirole - again

Post by ViewsAskew »

Wonderful!!!!
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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Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Attempting to get off Ropinirole - again

Post by badnights »

So heartening to hear good news like 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.

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

Re: Attempting to get off Ropinirole - again

Post by Polar Bear »

Decent sleep continues on my Cpap, last night I got 8 hours, in two shifts. How good is that!!
Been on it for over a week now and questions arise. The machine gives data, one of which is Periodic Breathing. When I Google this it appears to be relevant to Central Sleep Apnea. The readings have been in the realms of 4, 4, 0, 0, 4. Then two days ago it was 19%, and this morning it was 25%. I'll try to contact my Respiratory Nurse next week and see what this is all about.

I have read that something like 80% of RLS sufferers also suffer from PLMs. I'm in the 20% who don't have PLMs. Or am i?

Today my husband told me that before I woke up during last night and got up, I gave a few kicks. First he's mentioned it. (He hasn't been sleeping as soundly as usual these last few months). He said my legs were moving a wee bit and then I kicked. Getting up immediately after this.
Hmmm.... News to me. Asked if I'd ever done this before he replied... Now and again. So who knows.
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

Rustsmith
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Location: Colorado Springs, Colorado

Re: Attempting to get off Ropinirole - again

Post by Rustsmith »

When you have PLMs, you are not aware of it but your husband would be. There is also a good chance that they were being overshadowed by the sleep apnea and that they only become evident when the OSA is controlled. The sleep study would have shown signs of PLMs, but they wouldn't have said anything if they were minor, especially in light of how bad your OSA is/was.

Also, your ropinerole does as good a job at controlling PLMs as it initially does for RLS. So as you cut down your ropinerole dose, there is a good chance that you may experience PLMs, or maybe I should say that your husband will experience the. LOL
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.

Polar Bear
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Posts: 7989
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Attempting to get off Ropinirole - again

Post by Polar Bear »

That makes sense Steve. I’ve been off the ropinerole for nearly a year.
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

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