Attempting to get off Ropinirole - again

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Polar Bear
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Re: Attempting to get off Ropinirole - again

Post by Polar Bear »

You’d think, wouldn’t you.
It’s managing to get the attention of whoever sorts the waiting list that is a problem.
I guess everyone on the waiting list thinks they are special.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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ViewsAskew
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Re: Attempting to get off Ropinirole - again

Post by ViewsAskew »

Polar Bear wrote:
Fri Oct 02, 2020 7:37 pm
It was a helluva clatter as I went down at 3am and my husband upstairs didn’t hear a thing, didn’t waken. Quite funny because just where the dishwasher is sited is a confined area and there wasn’t much space left when I was couped between it and the facing cupboard. I was like an upended turtle. Not a pretty sight ..... lol
That really is scary!
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: Attempting to get off Ropinirole - again

Post by Polar Bear »

I’m happy to say that J (my daughter in law) has spoken with the Respiratory Consultant in her hospital who was previously the Senior RC in the hospital to which I have been referred (Post Code allocation) and which has the 3 year waiting list.

J says he was delightful to speak with. He now has a copy of my Sleep Test and the covering medical reports already sent to my local hospital requesting a Sleep Department appointment to assess for a Cpap.

He is going to try and speak with a RC in my allocated hospital sleep Department.

Who knows if this will work. Even if it brings me to the attention of my local RC, said RC may not see my need above that of others on the list.
On the other hand ..... just maybe .....

As an aside, J tells me that her own hospital is now seeing the effects of what is clearly the Covid 19 Second Wave. The numbers are now at what it was at Day 8 of the initial Lock Down back in March. And rising dramatically. Her hospital is not as well prepared as it was in March to deal with this because of nurse and doctor fatigue. Also in March the Clinics and the elective surgery for the likes of cancer were cancelled. To date they have not as yet been cancelled this time which would release nursing staff and doctors to help fight Covid.

So it’s possible that the Sleep Department Clinic at my local hospital may yet be further depleted for lack of staff deployed elsewhere.
Which is probably as it should be.

We shall see.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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ViewsAskew
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Re: Attempting to get off Ropinirole - again

Post by ViewsAskew »

Ugh. Glad you have their attention - better than not! And, really hope that this isn't the 2nd wave...but sounds like it very will might be.
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.

legsbestill
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Re: Attempting to get off Ropinirole - again

Post by legsbestill »

Betty, are you not sleeping because of rls? Or is it something else? What dose of codeine are you prescribed? Would it be worth taking some extra kratom for now just to try and get some more sleep? I know you have said that you are concerned about it becoming less effective but what you are going through at the moment sounds like torture. It is difficult to overdose on kratom because it induces nausea so I would have thought it might be worth trying to up the dose a bit. Even for one night in every three or so. You have incredible fortitude.

Polar Bear
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Re: Attempting to get off Ropinirole - again

Post by Polar Bear »

legs... When i dont sleep during the night it is a mix of low level rls, insomnia and peripheral neuropathy.
I take my RLS meds around 11pm, 60mg Codeine, 400 lyrica. And usually 1 teasp kratom. Occasionally 2teasps.
Bed around 1am. Sleep a couple of hours. Up for 2 or 3 hours. Sleep again for another couple of hours with perhaps another teasp kratom.
This is a general pattern ..... Except when it is not !!

Other Codeine is taken throughout the day = 12 x 15mg total.
Lyrica 400mg also in the morning.
I have never gone higher than 2 teasp kratom in one dose.
I often wonder if my (untreated) moderate sleep apnea is the cause of me sleeping no longer than 2 hours at a time.
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 »

I’m happy to say that J (my daughter in law) has spoken with the Respiratory Consultant in her hospital who was previously the Senior RC in the hospital to which I have been referred (Post Code allocation) and which has the 3 year waiting list.

J says he was delightful to speak with. He now has a copy of my Sleep Test and the covering medical reports already sent to my local hospital requesting a Sleep Department appointment to assess for a Cpap.

He is going to try and speak with a RC in my allocated hospital sleep Department.
Just to update: My daughter in law J has received a short email from the Recpiratory Consultant in her hospital to confirm "Apologies for the delay. I have contacted my colleagues in the sleep service at XXXXX hospital who will try and expedite things".

I can ask for no more.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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Rustsmith
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Re: Attempting to get off Ropinirole - again

Post by Rustsmith »

PB, that's great news. I hope that they do expedite your case and that you get in for the sleep study soon.
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.

ViewsAskew
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Re: Attempting to get off Ropinirole - again

Post by ViewsAskew »

So glad to hear that!
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: Attempting to get off Ropinirole - again

Post by Polar Bear »

I am very happy to say that today I received a telephone call from the Respiratory Nurse at the hospital to which I have been referred and which has the 3 year waiting list for cpap assessment. I have been on the list about 4 months and it is one month since my daughter in law intervened.

The nurse advised that the Consultant has looked at my privately obtained sleep test results and agrees I should receive a cpap machine, probably in about 4 weeks. The cpap is rented and the Agent will be in touch with me to fit the mask. Because of Covid the hospital is not doing face to face appointments. The machine is automatic and will not require callibration. She talked to me about using it, how it works, and referred me to a relevant Utube video. If there are any issues using it I have her direct number.
Thank you so much to my dear daughter in law, and to the Consultant she spoke to that she had previously worked with who did her the favour of giving me a 'leg up' to his colleagues at my referred hospital.

Morally it is not fair to others on the cpap waiting list but as I try to cope with (amongst other health issues) WED/RLS, Insomnia, Peripheral Neurophany and Sleep Apnea.... I will take any help available.
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, that is wonderful news. And don't feel guilty about "cutting" the queue. Others may not have all the rest of the health challenges that you face. Also, I learned long ago that we all need to use the resources that are available to us. That means pulling strings via your DIL, then so be it. You can be sure that others have done the same, or tried.
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 »

Thank you Steve. In life in general I have at times missed out through doing the right thing. I agree with you and am delighted.
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 »

Excellent news.
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 »

Wonderful news, Betty. I agree with Steve - too often I've pushed myself back or failed to push myself forward, out of politeness or, I guess, the sense that is was the only morally defensible way to behave (something that was pushed onto me at a young age). But after a while you look around you at the people who have health and success and they're not the ones who let others go first. They're the ones who honestly think they deserve to cut in line. So we're all better off if we honestly think that :) - that smilie should be a wicked grin
Beth - Wishing you a restful sleep tonight
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Polar Bear
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Re: Attempting to get off Ropinirole - again

Post by Polar Bear »

Thank you Beth. I agree wholeheartedly. We must fight our corner and look out for ourselves using all means possible.
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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