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 »

Thank you everyone for kind and caring responses.

I'm sitting outside wearing two dressing gowns and a blanket listening to the birds. it's 6am and I've had a two hour sleep..
Got woken up with acid reflux. The acid reflux has been playing up again. Last month my GP changed my Nexum back to my previous med (at half the previous dosage and without telling me) as the Nexum interacts with a new blood thinning med.

When the practice opens at 8.30am I will ring immediately to get into the telephone queue to request a telephone appointment to discuss this. It will mean constantly hitting redial because 34 million others will be trying at the same time. I thank whatever God there is that I'm fit and able to keep tabs on meds.
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 »

I thank whatever God there is that I'm fit and able to keep tabs on meds.
It's a scary thought to think of being unable to keep track of things anymore.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
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Re: Attempting to get off Ropinirole - again

Post by ViewsAskew »

badnights wrote:
I thank whatever God there is that I'm fit and able to keep tabs on meds.
It's a scary thought to think of being unable to keep track of things anymore.
Nananananananananana - that is me with fingers in my ears. Refuse (for now) to think on it, about it, of it, whatever preposition I use, it is not something I want to do!
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 »

:lol:
Beth - Wishing you a restful sleep tonight
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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 »

It's quite a while since my last post on sleep. At the minute I'm getting about 3 to 4 hours sleep at night in two fragments.

But, hallelujah..... Just over a month ago I did an overnight sleep test at home, strapped around the chest, an air flow tube at my nose and peg on my finger. I was concerned that I wouldn't sleep long enough, or indeed at all, but was reasssured that if I could provide 5.5 hours' sleep it would be sufficient and no problem if it was fragmented.

The machine was left back to the Clinic with 6 hours sleep recorded on it. It was recording for about 14 hours and 6 hours of that was sleep.
The result was slow in coming to me because of C19.
Today the Sleep Consultant rang me with the assessed result.
I have moderate Obstructive Sleep Apnea with 20 events per hour. I need treatment with a cpap. My sleep quality is very poor and he stated that I must have been coping in a very fatigued state.
I could have the cpap treatment done privately through the Clinic but chose for him to refer me to the NHS and hope that it doesn't take the NHS too long to get around to me. (If too long I can always go back Private).

The sleep test overnight at my home cost £186. Today I asked what was his consultancy fee for his report. What a gentleman. Because he took so long to revert to me and he didn't see me face to face, just a few minutes on the telephone (the Sleep Test was requested by my Neurologist) there would be no charge. How refreshing.
Sleep Cons will send his report to the Neurologist, cc it to me, and make a referral to the NHS.

I will hear in due course from the Neurologist.

Now..... what comes to mind is how many times over the last 12 or so years I visited my GP desperate for sleep and have been prescribed just about every sleeping drug available without success.
I wonder why my GP never suggested sleep apnea.

And actually, at the start of these investigations 6 months ago (because of Covid 19 it took 3 months to get an initial Private Consultant appointment) I had asked my GP could I see a Sleep Specialist and GP said No, I needed to see a Neurologist...... which I did.... and Neurologist referred me to the other consultant for ..... a sleep test.

At the moment I am waiting..... and will do some research on obstructive sleep apnea.

And I wonder how much is connected. For a month my calf and ankle has been uncomfortably swollen. It's not cellulitis and there is no clot. I have an appointment next week for a BNP blood test to check for heart failure.
We all know that we need sleep for our body to repair itself and there hasn't been much repair going on with Polar Bear this long time.....

Once again I've rambled on. Thank you all for reading.
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 »

Both very frustrating and excellent news.

I have mentioned it before - a book about how doctors think. They tend to get blinded by what is in front of them. They read notes on charts and that sets up their framework. They also get very discouraged when they cannot help after a few tries and essentially stop trying (sort of to protect themselves from the failure). Just a great reminder how important we can be in this process and how we have to ask for things. And, a great reminder that if we do not know the options, we cannot suggest them! I have to wonder if we need to learn the skills I learned as a mediator (or such as a therapist might use) - things like, "Help me think this through - if I were someone else, what might you think of me being tired all the time?" Seems crazy that we have to be think like that. And when tired, how can we???

I am SO glad you are getting a machine, Betty! My husband got his around 2006. Then he "diagnosed" his brother - who got his in 2008. Then he "diagnosed" his good friend (although his is central and more complicated) as well as his brother-in-law, his sister, and my good friend!!!! All these people didn't get asked by their doctor and my husband was familiar enough with the signs that he was sure they all had it - and they did. Which is sort of a big circle back to the original issue with you - you needed my husband in your life, clearly!

The right mask is crucial - getting fitted is so important. Hope they work with you on 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 »

Thank you Ann. I have a friend who uses a cpap and she has been great with advice about machines and how important the fit is. Also on making them comfortable.
As I'm being referred back to the NHS it will be interesting to see what the waiting time will be.
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 »

polar bear wrote: how many times over the last 12 or so years I visited my GP desperate for sleep and have been prescribed just about every sleeping drug available without success.
I wonder why my GP never suggested sleep apnea.
...
I had asked my GP could I see a Sleep Specialist and GP said No, I needed to see a Neurologist......
Doctors are not taught much about sleep. I don't know how much things may have changed now, but I read that 20 or 30 years ago, the entirety of sleep teaching given to medical students in the course of their years of training was encompassed in three lectures. Or was it a single lecture. Something ludicrous like that.

So no wonder most doctors hadn't a clue. Any from that generation who have a clue today developed it from on-the-job learning, something not every doctor seems able (or willing) to do.

I don't know how much better the situation is now. I like that the Foundation does continuing-education things for medical professionals but it's a huge job. (If we want to see more of that, we can donate and specify what we want the donation to go to.)
We all know that we need sleep for our body to repair itself and there hasn't been much repair going on with Polar Bear this long time.....
xoxoxoxox :( :(
viewsaskew wrote: Just a great reminder how important we can be in this process and how we have to ask for things. And, a great reminder that if we do not know the options, we cannot suggest them!
Too true!
Beth - Wishing you a restful sleep tonight
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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 »

To update. I've got a copy of my sleep test which shows from memory 22 apneas, 152 hypopneas, oxygen saturation averaging 87 with lowest at 77.
The private consultant referred me to the NHS for continuing treatment and today I phoned the NHS who confirmed they had received the referral and that the waiting list is 3 years!! Well, what can I say.

Then there's my ankles and legs that are still swollen. My GP had initially sent me to ER as he feared a clot and also a rash looked like cellulitis. Blood test showed no clot and also showed no inflammation so not cellulitis. ER said to have GP check for heart failure. As it happens the sister of My daughter in law operates the NHS Critical Cardiac Unit in a different hospital. She spoke with one of her doctors who phoned me to discuss and told me to go see him the next day. An ECG was done which showed my heart ok. He looked at my swollen legs and confirmed it was cellulitis. A conflicting diagnosis from two different hospital doctors within a few days. This does not inspire confidence, which Dr is correct.

Back to the GP who gave me a one week course of antibiotics and changed my blood pressure meds to one which includes a diuretic. The swelling has eased but is still there, same for the rash. I'll need to go back to the GP as he said if that didn't work bed be sending me back to the hospital as he's at a loss. GP Appointments are by way of a phone call. The bonus is that my blood pressure has reduced from a controlled 120/80 to 103/75.

So,
1. I'm still sleeping only3 or 4 hours and often less only going to sleep at 6 or 7 am. With a 3 year hospital wait for a cpap. I also wonder how much benefit there will be from the cpap when I don't sleep much to be able to use it.
2. GP is at a loss over the swelling.
3. I can't even think of talking to GP about reflux that is no longer being controlled :) or they'll be locking me up :)

This must be the longest post ever but I wanted to be comprehensive. What a blessing is this discussion board to be able to vent to others who get as frustrated as myself.
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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Re: Attempting to get off Ropinirole - again

Post by Yankiwi »

Oh, Betty, what a lot of problems, not least of which is the NHS. At least you had your heart checked and it and your blood pressure is now okay. Best wishes for even a small solution.

QyX
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Re: Attempting to get off Ropinirole - again

Post by QyX »

Oh Betty,

please stay strong. 3 years waiting list? This is completely absurd considering your condition.

There must be something you can do, especially with RLS as a comorbidity?

Your quality of life suffers so much because you are not getting the correct treatment.

And this is the United Kingdom ... wow

The more I learn about medical systems from other countries, the more I am grateful I am living in Germany. Yes, we have our issues, too but it not even remotely as bad as this.

I wish I would know the NHS better to give you some advice. 3 years with acute serious issues? That sounds completely insane.

ViewsAskew
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Re: Attempting to get off Ropinirole - again

Post by ViewsAskew »

As wonderful as the NHS is in many ways, this is horrifying. And, why many people in the US resist a similar form. Large systems are so difficult to manage.

What will you do? I cannot imagine how you must feel.
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 »

Ann

I've been seeing two different doctors in the GP medical practice.

One who referred me on with regard to sleep issue. Guess I go back to her and say ok, I've got these tests done privately but now I'm back to the NHS what do you suggest we do while waiting for 3 years on a Sleep Clinic appointment about the cpap? Take a look at all of my issues and add together the stress of living with all of them....and no sleep!!

The other who referred me on about the swollen ankles with rash. Same thing to him. Tests done.... Still swelling... What happens now? A further antibiotic for what may or may not be cellulitis?? What do you suggest. He's already said he's at a loss. It'll be a long NHS wait on whatever hospital department he refers me on to just to get me to be someone else's problem. Or am I being cynical :)

Thanks everyone for your comments.
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 »

Polar Bear wrote:
Thu Jul 23, 2020 9:12 pm
Ann

I've been seeing two different doctors in the GP medical practice.

One who referred me on with regard to sleep issue. Guess I go back to her and say ok, I've got these tests done privately but now I'm back to the NHS what do you suggest we do while waiting for 3 years on a Sleep Clinic appointment about the cpap? Take a look at all of my issues and add together the stress of living with all of them....and no sleep!!

The other who referred me on about the swollen ankles with rash. Same thing to him. Tests done.... Still swelling... What happens now? A further antibiotic for what may or may not be cellulitis?? What do you suggest. He's already said he's at a loss. It'll be a long NHS wait on whatever hospital department he refers me on to just to get me to be someone else's problem. Or am I being cynical :)

Thanks everyone for your comments.
Is it this bad in all areas of the UK, or worse in your area for some reason. I moved 2000 miles to be close to Dr. B. - your family is there, but you could vacation for a few months in another area is it would be better.
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
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Re: Attempting to get off Ropinirole - again

Post by Yankiwi »

It might be better in Germany but long delays for problems not thought to be urgent are typical of New Zealand's socialised medicine. Once you get to the head of the queue the care is excellent. If you are in a car crash, for instance, you get immediate great care. To get a cataract removed you have to be just about blind in both eyes. I have insurance but friends without have opted to pay.
I had excellent care when my substitute calcium prescription almost killed me but was lucky to get to the hospital on time. The prescription change was due to cost cutting, there are no options in New Zealand, you get what the drug buying agency prescribes and it's always cheaper, cheaper cheaper.

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