Attempting to get off Ropinirole - again

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Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Fri Aug 16, 2019 12:28 pm

I could see a private consultant and have done so before but not asking for a particular prescription. Guess you wouldn't know what consultant would be willing to prescribe until having an appointment.

At present GP has referred me to an END consultant but there is a waiting time. It is something I could discuss with him. If I don't be to NHS consultant before I need him I could ask for referral to a Private one.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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badnights
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Re: Attempting to get off Ropinirole - again

Postby badnights » Sat Aug 17, 2019 7:09 pm

Rachel wrote:Betty, I haven't been on here in a while and just read back through your recent posts. I can't believe how well you've done - what a fantastic reduction. I see your struggles with deciding which doses to reduce and also notice you saying that you have stayed a long time on 1.25mg. However it has only been 6 weeks and in that time you yourself record that you have moved from a position of anger and frustration to acceptance of the new reduced sleep regime. It sounds to me very much as though you are approaching this in a manner that suits you and your lifestyle. Each reduction will likely bring further privations (all ultimately temporary) but the human spirit is amazing in its ability to normalise and manage seemingly unbearable difficulties. For a different person with a different lifestyle, a cold turkey approach at this stage might be the best option but your system seems to be working for you. I hope that your latest reduction (removing the 1pm dose) is not too traumatic. It is certainly bringing you substantially closer to your goal. Only two more reductions and you will be appreciably under the 1mg mark. It is an amazing achievement and you should take a moment to feel very proud. In a matter of months your current difficulties will be a memory and you will be moving forward into the joy of a dopamine agonist free regime. It is likely that your symptoms will settle down dramatically from their current level and most likely you will not have anything like the problems you have had in the last few years, particularly in terms of the daytime symptoms. Go you! Rachel
Oh Rachel, what a wonderful and insightful and well-worded post!
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.

badnights
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Re: Attempting to get off Ropinirole - again

Postby badnights » Sat Aug 17, 2019 7:10 pm

Betty wrote:At present GP has referred me to an END consultant but there is a waiting time. It is something I could discuss with him. If I don't be to NHS consultant before I need him I could ask for referral to a Private one.
What is an END consultant?
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

Postby Polar Bear » Sun Aug 18, 2019 10:54 am

Ooops, didn't do a thorough proof read. END should read NHS.... National Health Service here in UK.
Betty
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Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Sat Aug 31, 2019 4:02 pm

Last night was my first to take Kratom. Feeling quite nervous about it.
At 12.30am going to bed took a quarter teasp. Woke up after 2 hours.
Going back to bed again at 3.45am took a half teasp and slept for 2.5 hours.
Thereafter dozed on and off for a couple of hours.
This (with medication) is a normal night for me so I can't see that the Kratom helped with sleep on those dosages.

However.....
Having taken the Kratom. I decided it was time to further reduce my DA and so dropped my usual 3am dose, it went ok,
Actually I dropped the 3am DA plus the single codeine pill that usually goes with it.
Time will tell if this has been a coincidence.
I put the powder into water and a little dilute orange, just to help get it down.
Honestly it didn't taste too bad. Guess I've read so much about how vile it tastes that it was built up in my mind to extreme proportions of vileness. :sick:

Bottom line - it may or may not help with sleep, but it just might be of benefit as I further reduce my ropinerole.
And.... just look at me...... I've got from 5mg down to .75mg....
Betty
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Rustsmith
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Re: Attempting to get off Ropinirole - again

Postby Rustsmith » Sat Aug 31, 2019 5:53 pm

Congratulations Betty, that is an impressive reduction in your ropinerole dose.

Do I understand you correctly that in addition to trying the kratom, you also cut out a DA dose and also reduced your codeine?

If that is correct, then it sounds like the kratom may have been of benefit. Covering for a reduction in both of those meds is significant.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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legsbestill
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Re: Attempting to get off Ropinirole - again

Postby legsbestill » Sat Aug 31, 2019 6:59 pm

.75mg - less than 1mg!!! Congratulations!!! You are doing so well. To me one of the worst things about the dopamine agonists is how they gradually, sneakily remove such control as we have over the condition. You are truly taking back control.

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Sat Aug 31, 2019 7:01 pm

Yes Steve, I cut out my 3am dose of .25mg ropinerole and 15mg codeine. I was taking a half teasp of Kratom (hoping for sleep) at that time and it seemed an opportune moment to take that step. It wasn't planned in advance.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Sat Aug 31, 2019 7:07 pm

Legs, I am still a little afraid of losing control if it all goes belly up at the last hurdle(s) but nearly there and happy to now have the kratom. Not sure just how high you can safely go in kratom dosage but will keep it as low as possible.
Betty
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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 » Sat Aug 31, 2019 10:42 pm

Polar Bear wrote:... happy to now have the kratom. Not sure just how high you can safely go in kratom dosage but will keep it as low as possible.
Most people can easily go up to 4 grams (about 2 tsp) without any problems. Over 8 grams causes problems (nausea, vomiting, constipation, etc) for most people.
Blessings,
Holland

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Sat Aug 31, 2019 11:03 pm

Holland, that’s great to know. Up to two teasp is ok.
If that is 2 teasp as a single dosage, how often could that be done in a day/24 hours. Just for future reference.
Betty
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ViewsAskew
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Re: Attempting to get off Ropinirole - again

Postby ViewsAskew » Wed Sep 04, 2019 7:44 pm

Wow - that is wonderful, Betty!
Ann - Take what you need, leave the rest

Managing Your RLS

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stjohnh
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Re: Attempting to get off Ropinirole - again

Postby stjohnh » Thu Sep 05, 2019 1:21 am

Polar Bear wrote:Holland, that’s great to know. Up to two teasp is ok.
If that is 2 teasp as a single dosage, how often could that be done in a day/24 hours. Just for future reference.


I wouldn't go above 3 times daily at that dose.
Blessings,
Holland

badnights
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Re: Attempting to get off Ropinirole - again

Postby badnights » Thu Sep 05, 2019 4:08 am

I'm happy for you, Betty. This is a courageous thing you're doing
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

Postby Polar Bear » Thu Sep 05, 2019 7:58 am

Holland, no worries, my dose is half a teasp at bedtime and again during the night. I'm actually thinking of trying just the one dose during the night. This is in place of the DA that I used to take during the night.

It appears to work well though not so much for sleep.

I have a GP appointment for the beginning of October the first I could get for a non urgent appt. Our NHS system is severely under pressure with overload. This appt is to ask for further med support now that I am down so low in the DA. Could be down further by then. Dr will not know about the Kratom. I'll especially need the further med support because I'm going to Malta in mid October on holiday and won't be able to take the Kratom.
I can just imagine the sniffer dogs at the airport....... Yikes :)

Beth, thank you.

Couldn't have done it without the support I'm getting here.
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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