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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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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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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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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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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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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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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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

Polar Bear
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Re: Attempting to get off Ropinirole - again

Post by Polar Bear »

An update.
The cpap machine continues to let me sleep, in so glad to have it.

Unfortunately due to boundary issues I have had to move medical practice to one in my home town. I had been with my previous practice for 45 years and was lucky after moving house 17 years ago to remain with them for so long. Here in UK we must register with a GP who is local.

I recently ordered my monthly prescriptions which included Codeine 15mg x 400 = about 14 daily. When I picked up my prescriptions that was only half the number and a message to ring the practice to discuss. The GP said she wasn't happy at the amount I was getting and wished to reduce with a view to coming off the Codeine. I explained that I spent many years with my previous practice trying all the usual RLS medications and eventually the Codeine regime was what worked. It gave me back some quality of life. I asked what she would propose in place of codeine and she said nothing!!
Well!! I then asked if she was familiar with the treatment of severe 24/7 RLS and that we were not talking about just an irritation. We were talking about a condition that is devastating to every aspect of everyday life.
I offered to provide documentation but she didn't appear receptive.
She said it was me she was thinking of and the effects of long term codeine. I confirmed that I understood this but it was my quality of life that was in question.
After discussing my current regime we agreed on 12 pills per day and she will provide another prescription this month to make up the balance for the rest of the month at 12 pills daily.
She did add that this would be with a view to further reduction.I will be able to manage on 12 daily, I often do. But clearly don't want too much of a reduction.
On the other hand if I could reduce the Codeine and it worked that would be great.
I will drop my 15mg at 9am, I often don't take this anyway. I will reduce any dose normally taken at 3am, sometimes I already reduce this, sometimes not taking it at all if no symptoms.
I can manage on 12 pills hence my stash.
I already take pregabalin for neuropathy which will be providing some benefit also to my RLS.

I am disappointed that she was initially talking of me coming off codeine completely. Perhaps we will end up on an agreed Codeine level which I hope will be doable. I do understand her current point of view, I am new to the practice and they don't know me and don't know that I am a sensible person.

All appointments are by phone.
I don't think she knows much about RLS.
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

Yankiwi
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Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: Attempting to get off Ropinirole - again

Post by Yankiwi »

That’s a real shame that you had to leave your GP of 45 years and that your new one is not clued up on treating severe RLS. Phone consults are not optimal between a doctor with a new patient. There’s no way to detect facial clues or body language. Phone consultations are usually fine between established doctors and patients.

Polar Bear
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Re: Attempting to get off Ropinirole - again

Post by Polar Bear »

Absolutely correct Yankiwi, there is no relationship or built up trust when joining a new medical practice. But in the absence of this I had hoped for some respect for the decisions of my previous doctor.

Today in starting the reduced regime I had symptoms early evening but got rid of them in an hour by walking and creaming my feet and legs waiting until the meds kicked in.
There has been a great 6 weeks of blissful sleep since I started the cpap and I hope that RLS does not become a bigger issue because of reduced meds and again awaken me at night.
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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Re: Attempting to get off Ropinirole - again

Post by ViewsAskew »

Ugh.
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.

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