Attempting to get off Ropinirole - again

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stjohnh
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Re: Attempting to get off Ropinirole - again

Postby stjohnh » Thu Sep 05, 2019 2:05 pm

Polar Bear wrote:...
It appears to work well though not so much for sleep...


That is my experience w kratom as well, good for urge to move, not so much for sleep. THC (cannabis) seems to be the best for sleep.
Blessings,
Holland

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Wed Sep 11, 2019 9:15 am

Ok.... I've been on .75mg ropinerole for quite a few days having dropped the 3am dose. Been using the kratom to replace this dose by taking half teaspoon about 12.30am and another half teaspoon at 3am. Total 2 grams. This doesn't seem to be enough as on occasion I've had to take some codeine to sort out middle of the night RLS symptoms.

I might just combine it in one dose of 2 grams. Or I might increase each dose to 1.5g each and total 3 grams.

It's all trial and error.

Whatever I do, the kratom will need to be replaced by increased codeine for a week during mid October holiday.

Today I have 2.5yrs grandson for childcare and he is as bright and fresh as a new shiny button. Needless to say I am counting the minutes until he naps and I will rapidly jump into bed with a book and see if I can nod off :)
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

oceanwalker
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Re: Attempting to get off Ropinirole - again

Postby oceanwalker » Thu Sep 12, 2019 7:57 pm

Well I went to my GP this and and I was shocked ! She knows I have been trying to reduce my Ropinirole
Anyways I took with me more information about augmentation plus the latest edition of Nightwalker
She then advised me that I needed to be on the highest dosage of Ropinirole before anyone could prescribe Opiates? I had been on the highest for a long long time and I am now down to 4 or 5 per day
In any event I am shocked This is all becoming even more frusterating :( I am not in the market for increasing my agonists NO ! Took a long time for me (this time) to reduce
So It is as it is and NO I cannot change GP's It is just not allowed here ...not so readily anyways Ah well
Thanks for reading
Sincerely,
Oceanwalker

stjohnh
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Re: Attempting to get off Ropinirole - again

Postby stjohnh » Thu Sep 12, 2019 8:45 pm

oceanwalker wrote:She then advised me that I needed to be on the highest dosage of Ropinirole before anyone could prescribe Opiates? I had been on the highest for a long long time and I am now down to 4 or 5 per day
In any event I am shocked This is all becoming even more frusterating :( I am not in the market for increasing my agonists NO ! Took a long time for me (this time) to reduce
So It is as it is and NO I cannot change GP's It is just not allowed here ...not so readily anyways Ah well
Thanks for reading
Sincerely,
Oceanwalker


I'm sorry you are having such problems. One solution, though expensive, is to see a US doc. Another is to try kratom. Another, if there is no other option, is to keep your ropinirole dose the same, but go back to your doc and tell the doc you increased the dose and your symptoms are getting worse. I know it is shocking, but patients lie to their doctors frequently.
Blessings,
Holland

ViewsAskew
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Re: Attempting to get off Ropinirole - again

Postby ViewsAskew » Fri Sep 13, 2019 1:36 am

stjohnh wrote:
oceanwalker wrote:She then advised me that I needed to be on the highest dosage of Ropinirole before anyone could prescribe Opiates? I had been on the highest for a long long time and I am now down to 4 or 5 per day
In any event I am shocked This is all becoming even more frusterating :( I am not in the market for increasing my agonists NO ! Took a long time for me (this time) to reduce
So It is as it is and NO I cannot change GP's It is just not allowed here ...not so readily anyways Ah well
Thanks for reading
Sincerely,
Oceanwalker


I'm sorry you are having such problems. One solution, though expensive, is to see a US doc. Another is to try kratom. Another, if there is no other option, is to keep your ropinirole dose the same, but go back to your doc and tell the doc you increased the dose and your symptoms are getting worse. I know it is shocking, but patients lie to their doctors frequently.


I am not usually one to say to lie to a doctor...but in this case? You are taking MUCH more than is recommended, so in a way, you already HAVE taking the highest dose. I say do what Holland said...
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

Postby Polar Bear » Fri Sep 13, 2019 10:02 pm

I am reducing ropinerole and it appalls me that your GP has said this. I am speechless!! To have reduced and then be told this.

Also, where I live we cannot readily change our GP so I truly understand your frustration.

To lie to a doctor goes against the grain but i'm with Holland and Ann on this. Whatever it takes.....
Betty
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Rustsmith
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Re: Attempting to get off Ropinirole - again

Postby Rustsmith » Fri Sep 13, 2019 10:49 pm

I have to agree with all of the comments above. Obviously it isn't good practice to lie or withhold information from your physician. However, if your doctor is so obviously ignorant and you cannot change, then what he doesn't know won't hurt you. Obviously he has no idea of what you have been going through nor the dangers of stopping from the high dose that he seems to think is appropriate.
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.

oceanwalker
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Location: Canada

Re: Attempting to get off Ropinirole - again

Postby oceanwalker » Sat Sep 14, 2019 4:17 am

Thanking everypne for their replies and kindness
Could someone please explain to me about Kratom? I am ignorant about it
Many thanks and Blessings to all

Sincerely Oceanwalker (Marie)

badnights
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Re: Attempting to get off Ropinirole - again

Postby badnights » Sat Sep 14, 2019 7:30 am

kratom is a plant with opioid-like properties. you can order it online. Board members have used the following places and verified them as good suppliers (as of last year I think):
So Cal: https://www.socalherbalremedies.com (search for speciosa, a tea)
Velvet Soul Naturals: https://www.velvetsoulnaturals.com/ (search for Mitragyna. Always finely ground and fresh)
Kat's Botanicals: https://katsbotanicals.com/
Valkyrie Botanicals: https://www.valkyriebotanicals.com/
Tea Time Botanicals: https://www.teatimebotanical.com/
Mystical Island: http://www.mysticislandkratoms.com/ (no one on the board has tried it but a number of people have heard on Reddit that it’s good)
For pouch discs to put it in, http://a.co/dJpaBJV

There are different strains of kratom which have different effects. The red strains are said to be good for WED, for pain, and for sleep, particularly Red vein Borneo. Also Horned Red has been mentioned as being effective plus being a potent sedative. An exception might be Thai red vein, some people have said it has an alerting effect. Other strains that have an alerting effect and are good for daytime WED are Maeng Da, Yellow Borneo, the green strains, and the white strains.

Treat kratom as you would an opioid medication. You';; have to experiment to get the right dose; do so cautiously. You can search the board here for "kratom" and read of other people's experiences with doses and methods of ingestion. I think most people are mixing the dried leaf (powder) with an acidic juice.
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

Postby Polar Bear » Mon Oct 07, 2019 12:51 pm

It's about 4 weeks since I last posted.
Today I visited my new GP to discuss my last steps off my Ropinerole.
What a frustrating appointment.

My new GP said she so much wanted to help but can do no more having already increased the Codeine up to the max and added Lyrica. My condition is now beyond her limits and she needs to refer me to a neurologist.
Well yes actually........ I was referred to Neurology 6 months ago !!
the NHS waiting list is 2 years. Didn't push it because I have no confidence in any of our neurologists, my experience with them has been less than useless.
Also my previous GP (who has left) was more than willing to work with me - although I wasn't coming of Ropinerole in those days.

I had with me 'how to treat augmentation' in the Clinical Management of Restless Legs Syndrome book. the RLSInternational Study Group White Paper. Strategies for the Treatment of RLS with the Augmentation bit highlighted. The Foundation brochure 'What is Augmentation'.
Dr says she cannot prescribe medications such as oxycodone as per the literature, and that it looks like I'm in for a rough time with lots of walking.
I advised I'd pay to see a Neurologist if she could assure that the Neurologist was knowledgeable about RLS augmentation and withdrawal and be willing to treat me with suitable opioids.
GP says that she will write to the Senior Neurologist at the hospital and see will he advise her via letter (because the waiting list is so long) and we will take it from there. This of course will take ages.
Given confirmation of his ability I will happily pay.

As I have two flights of 4.5 hours next week I asked for her help to get through these.
Nope, Very sorry but you are at the Codeine max .... you should try and walk as much as possible during the flight. Talk about teaching your Granny how to suck eggs !!

Well --- I have a small Codeine stash that will help take care of the two flights. Courtesy of Kratom replacing the occasional Codeine dose.

After I return from holiday I plan on once and for all getting off the last of the Ropinerole, maybe 3 steps over 3 weeks.
Whatever it takes.
And in the absence of the Neurologist's response to GP I might possible ring his office and ask of his RLS experience with a view to an appointment.
Although GP says she doesn't know if he does private work or not. Many of our consultants work only within the NHS System and don't do private care.
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

stjohnh
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Re: Attempting to get off Ropinirole - again

Postby stjohnh » Mon Oct 07, 2019 1:49 pm

Polar Bear wrote:It's about 4 weeks since I last posted.
Today I visited my new GP to discuss my last steps off my ropinerole.
What a frustrating appointment.

...
After I return from holiday I plan on once and for all getting off the last of the ropinerole, maybe 3 steps over 3 weeks...


Seems to me that your best option maybe getting off the ropinirole as you are planning, wait a couple of weeks and see if you can restart at a tiny dose. If the receptors have had enough time to reset, you may be able to get satisfactory relief from your codeine plus Lyrica plus tiny dose ropinirole.
Blessings,
Holland

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Mon Oct 07, 2019 4:11 pm

Thank you Holland, do you know I hadn't even considered revisiting the ropinerole once I got off it. I guess I was just going to wing it and hope that after getting off the ropinerole I could eventually manage with the lyrica, codeine and kratom.

It is certainly something to seriously consider.
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

Postby ViewsAskew » Mon Oct 07, 2019 6:28 pm

Years ago, before we had a discussion board here, there were RLS forums on multiple places (like 1995 to 2005). In one of those, there was a women from Florida who told her story of how she switched between two different DAs every few months. IIRC, she said that when one seemed to lose effectiveness, her doc had her switch to the other. I always wondered what that did. Seems to me, the ONLY reason we would have said one was losing its effectiveness would be the beginning of what we now call augmentation. Yet, she would switch and then be able to go back to a lower dose. She had done this for years.

Another option would be to try a different DA after a few weeks or so. NO idea if it would work...but one thing I have learned here is that when desperate, we are very creative...and that creativity often pays off.
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

Postby Polar Bear » Mon Oct 07, 2019 7:53 pm

Thank you Ann, now there's another option.
Let receptors reset (wonder how long that will take) then a little bit of the same - only different.
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

QyX
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Re: Attempting to get off Ropinirole - again

Postby QyX » Tue Oct 08, 2019 9:01 am

Wow! ...

You can't be expected to wait for 2 years to finally see a Neurologist where you don't even if he is knowledgeable in RLS and augmentation issues. This is just flat out ridiculous. I have my doubts if she its even realising all the trouble you are having and that it is only going to get worse without proper treatment.

There must be some possibilities in the system to see a specialist when there are urgent problems, right?

Is there maybe an option to get admitted into a hospital with a station for sleep disorders? We have specialised RLS stations in some hospitals in Germany.

There must be some loopholes in the systems you can exploit. I would make it perfectly clear to the GP that you can not tolerate those symptoms anymore and that something needs to happen.

For example you could argue depression, forcing her hand to admit you into a psychiatric hospital which then would force them to treat your RLS.

There must be other patients in the UK who have RLS and require opioids. Are there some self-help group in bigger towns you could contact to get a few names? What are the leading RLS experts in the UK and what does it take to get an appointment?

I've been working outside the box for many years now, being forced to push the limits of the system and my doctors. It is important we stand up for ourselves and demand the treatment we need. Maybe it is an option to contact the press or patient advocacy groups.

There must be somebody in the UK who knows the system well enough that can tell you what you are supposed to do. When I was looking for doctors here in Germany, I was considering the complete country.


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