Attempting to get off Ropinirole - again

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Icantsleep
Posts: 154
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: Attempting to get off Ropinirole - again

Post by Icantsleep »

ViewsAskew wrote:Marie - I think you are such a nice sweet person that they may be taking advantage of you. Do you have someone who can some with you? I have gone with my best friend as an advocate, and for my mother. Sometimes someone else who will be a bit more forceful can do what we cannot.
I agree with this

Bring a family member who can articulate how this disease has lowered your quality of life.
How your RLS impacts not just you , but those around you.
I brought my wife to my last appointment and that was very helpful
There was no brushing off the both of us .

This is serious and the more people on board with you the better
There is safety in numbers !

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

Re: Attempting to get off Ropinirole - again

Post by oceanwalker »

Thank you every one for all your help !
I will do it....
oh BTW I learned that Ropinirole will no longer be available here in Canada?

Thank you
Marie (Oceanwalker)

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

Re: Attempting to get off Ropinirole - again

Post by oceanwalker »

Thank you *I can'tsleep Views and Q for your replies ... Yes you are all correct But I have asked several times... I am going to see the doc again soon in the new year and I will demand to see a neurologist...See what this all brings about
Thank you all again
Marie (Oceanwalker)

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

Re: Attempting to get off Ropinirole - again

Post by ViewsAskew »

WIsh I could go with you. I know you have asked multiple times and that must be so frustrating not be be heard. Whatever you do, try your hardest to be as assertive as you can, even if that isn't comfortable. I noticed that you said that you asked - one thing I have found is that I have better outcomes when I switch to statements instead of asking. Asking gets you yes or no. and a no from a doc usually means I shut up. Statements require something different. "For my health and based on published research, I want to do X," requires the doctor to address that and talk to you, telling you why and what.
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: Attempting to get off Ropinirole - again

Post by oceanwalker »

Hello Viewsakew: Yes you are correct Statements are more profound You are all correct and I WILL DO That:)
Thank you for your encouragement ...after all it's MY Body ...
Again Thanks:) to you and all

Sincerely,
Marie aka Oceanwalker

ViewsAskew
Moderator
Posts: 16063
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Attempting to get off Ropinirole - again

Post by ViewsAskew »

oceanwalker wrote:Hello Viewsakew: Yes you are correct Statements are more profound You are all correct and I WILL DO That:)
Thank you for your encouragement ...after all it's MY Body ...
Again Thanks:) to you and all

Sincerely,
Marie aka Oceanwalker
YES! It IS your body.
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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Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Attempting to get off Ropinirole - again

Post by Polar Bear »

It has been a long time since I posted in this thread and can give an update having met (private appointment) with my Neurologist yesterday, Monday 9 March.

My husband George came with me and came into the appointment with me. I was happy for George to see and hear the Consultant and me not to have to recall and try to repeat everything. It also felt very good to be supported.

This was the neurologist that i didn't want.... having seen him 12 years ago and not been impressed.
I hang my head and take back all I said. He was as helpful as he could be.
He explained that a neurologist can't do a lot about actual sleep quality but he could try and find anything that could be contributory. I said I had wanted to see a sleep specialist and he advised there isn't one in N ireland. I'd have to go to England. He also said that sleeping pills don't really work, they may help to get to sleep but will not keep you asleep.

I was as prepared as I could be.
When he asked what medications I was taking - I produced a typed list of all meds, dosages, and a little chart showing when I took them.
So as not to waste time with uhhmmimg and aahhing.
On the GP referrall letter she just said I had fallen asleep at work.....
I attached a little note to explain that it was actually that I 'came to' and realised I'd lost 90 minutes.


At present I am prescribed 14 x zopiclone per month and to be honest I don't take them all the time. Having had nights where having taken a zopiclone and sleep didn't come until 6am, There doesn't seem to be much point. Occasionally I take 2mg Kratom, Again this does appear to settle my legs but it does not show any signs of helping sleep. Possibly because the Kratom 2mg dose is not nearly enough for sleep. Information indicates that it's more like 7mg to help with sleep and I'm not happy about that dosage.

The Consultant Dr C took 40 minutes to talk with me and do some physical checks, (confirming neuropathy).
I'm glad to say he he didn't dwell on RLS Symptoms - I told him right away that I was happy at present with my symptom control and that the issue was Insomnia.
He was very thorough in his questioning and requestioning, and also questioned George about how I was when asleep. To which G told him that I stopped breathing sometimes. Which leads me to wonder why my dear husband never told me this ?? Dr C talked about how sleep gets disturbed by rls, then gets disturbed more until eventally it has its own entity separate from the original rls disturbances and is Insomnia as a separate condtion.

Dr C felt that the time in December, when I had the 'absence' when working the election and couldn't account for 90 minutes, shouldn't have been so readily put down to exhaustion by my GP. Although I answered 'No' to most of his questions which appeared to be checking was it a mini stroke, he still wanted an MRI brain scan. I rang my Medical Insurance and received their approval -- and I had the MRI there and then.

Dr C wil ring me in a few days about the MRI result...... I imagine he's looking for signs of a mini stroke.
And he is thereafter planning to refer me across to a respiratory colleague to check on sleep apnea especially following the confirmation from G that I sometimes stop breathing... And of course definitely snore.

Thing is I'd told my various GPs so many times about broken sleep and waking up gasping and the gasping wasn't taken on board.
I'm happy that some things are being checked.
Not quite sure what to expect from the MRI result and from a Respiratory Consultant
Generally (most of the time) I can get over to sleep but only for a couple of hours. Wouldn't it be something if for all these years, it was sleep apnea that was fracturing my sleep.

My insurance just covers consultations and tests up to a certain limit. For any treatment it's back to the NHS.

Sorry my post is so long. I want to be comprehensive in case it helps anyone else.
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
Moderator
Posts: 16063
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Attempting to get off Ropinirole - again

Post by ViewsAskew »

Interesting, Betty. Well, just shows that one meeting with a doc is not necessarily enough! Glad he was so thorough. And, definitely odd husband hadn't told you that before! But, if you have been saying the gasping thing for years, definitely sounds like a missed opportunity for your local docs to help you.

Looking forward to the next set of tests - and wouldn't it indeed be something if apnea was the missing part!
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.

Yankiwi
Posts: 431
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 »

I'm lucky, my new permanent GP has restless legs! Not so lucky for her. She is open to prescribing codeine for me at night @ 2 x 60 mg and more for movies and travelling. She does have to specify the dose on the prescription though. At first she prescribed 70 tablets but the dose said one at night. The pharmacist said it didn't matter if she prescribed 1,000, all they could give me was 30. My doctor just changed the dose to two at night and as needed. She know I am not a drug seeker. Fat chance where I live if I was, there are two pharmacies, both owned by the same people.
I had a medical emergency in November where my normal calcium (15 years after having parathyroids removed) was no longer funded. An error was made in the new calcium where for nearly three months I was taking a double dose every day. This nearly killed me, literally. The hospitalist would no longer let me take tramadol because it is metabolised in a peculiar way and I was in acute kidney failure. He also said (and other docs I know) that it is a very dirty drug. But it was slow release, and although I willingly gave it up, codeine phosphate is not slow release. I am currently taking one 60mg dihydrocodeine continus which is slow release but no more potent than a 60mg codeine phosphate so my nights are pretty bad. I'm going to ask for another 60mg dihydrocodeine continus for midway through the night or 120mg. Right now my typical night is sleep 1.5–2 hours, up 1.5 hours throughout the night, never getting more than 6 hours which, I know, to some of us would seem great.

badnights
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Location: Northwest Territories, Canada

Re: Attempting to get off Ropinirole - again

Post by badnights »

yankiwi wrote: An error was made in the new calcium where for nearly three months I was taking a double dose every day. This nearly killed me, literally.
Dear God! I am so glad you survived this.
She does have to specify the dose on the prescription though. At first she prescribed 70 tablets but the dose said one at night. The pharmacist said it didn't matter if she prescribed 1,000, all they could give me was 30. My doctor just changed the dose to two at night and as needed.
I have the same issues and my doc does things the same way.

Re the codeine - the continus is supposed to last 12 hours. Although I certainly wouldn't expect it to last the entire 12 hours (because none of the extended-release opioids seem to last that long, despite the claims), still, it should be lasting you longer than 1.5 hr. So I agree the problem is probably that you're not getting enough. If you do get the increased prescription, take them both at once, not staggered. You might find you need 3 pills, not just 2; or something more potent.
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.

badnights
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Re: Attempting to get off Ropinirole - again

Post by badnights »

@polar bear
Dr C talked about how sleep gets disturbed by rls, then gets disturbed more until eventally it has its own entity separate from the original rls disturbances and is Insomnia as a separate condtion.
This is an old theory about WED/RLS and insomnia that is still bandied about - more or less that the insomnia is a bad habit developed from years of WED/RLS. I think it is becoming clearer now that the insomnia associated with WED/RLS is a different beast altogether - Holland said something about this recently that I liked. EDIT Mar 16: Here: http://bb.rls.org/viewtopic.php?p=101755#p101755.
Thing is I'd told my various GPs so many times about broken sleep and waking up gasping and the gasping wasn't taken on board
I wish I could make that sort fo problem go away. No matter how hard I try to be comprehensive yet concise, and regardless of the fact that my GP doesn't rush me and is kind and caring, I still end up hearing things from her that make me realize she has missed a key point. Example: she thought I took extra hydromorphone when I couldn't sleep. NO! It's when my symptoms are bad. Turns out she doesn't know what I mean by "symptoms". (How can you treat me for a decade and not know what the living hell of my symptoms is like? Probably because I have assumed that you know...)
My insurance just covers consultations and tests up to a certain limit. For any treatment it's back to the NHS.
Sell the house if you have to.

I'm so happy your neuro was good! and don't feel ashamed that you recall him as unhelpful - he probably changed a lot in 12 years :)
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.

Yankiwi
Posts: 431
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 »

Beth, thanks for caring and for your advice. Tomorrow I plan to write a detailed letter to my GP because with the coronavirus I don't really need to see her although I have an appointment in a few weeks. She knows me and wants to help. I lent her my copy of Clinical Management.

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 »

@Yankiwi - good! I hope she ups your dose without argument and your sleep improves.
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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Posts: 7830
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Attempting to get off Ropinirole - again

Post by Polar Bear »

Beth, thanks for your comments, always appreciated. :)
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
Moderator
Posts: 16063
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Attempting to get off Ropinirole - again

Post by ViewsAskew »

Yankiwi wrote:I'm lucky, my new permanent GP has restless legs! Not so lucky for her. She is open to prescribing codeine for me at night @ 2 x 60 mg and more for movies and travelling. She does have to specify the dose on the prescription though. At first she prescribed 70 tablets but the dose said one at night. The pharmacist said it didn't matter if she prescribed 1,000, all they could give me was 30. My doctor just changed the dose to two at night and as needed. She know I am not a drug seeker. Fat chance where I live if I was, there are two pharmacies, both owned by the same people.
I had a medical emergency in November where my normal calcium (15 years after having parathyroids removed) was no longer funded. An error was made in the new calcium where for nearly three months I was taking a double dose every day. This nearly killed me, literally. The hospitalist would no longer let me take tramadol because it is metabolised in a peculiar way and I was in acute kidney failure. He also said (and other docs I know) that it is a very dirty drug. But it was slow release, and although I willingly gave it up, codeine phosphate is not slow release. I am currently taking one 60mg dihydrocodeine continus which is slow release but no more potent than a 60mg codeine phosphate so my nights are pretty bad. I'm going to ask for another 60mg dihydrocodeine continus for midway through the night or 120mg. Right now my typical night is sleep 1.5–2 hours, up 1.5 hours throughout the night, never getting more than 6 hours which, I know, to some of us would seem great.
I missed this post! YIKES! Yeah, 6 hours would be great to many; still not enough and rightfully you want more.
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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