15 years is way too long

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curqlink
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15 years is way too long

Postby curqlink » Sun Jul 22, 2018 6:47 am

I have been on ropinirol for at least 15 years. After reading the info on this site i realized that i needed to get off this stuff. Finally got up the courage last night. All i can say is wow. Even with opioids i only managed 2 hours sleep last night and tonight is even worse. My legs were even driving me nuts while walking the floor. That has never happened. Anyone that can do this with no pain meds has my respect. Your made out of tougher stuff than me.

Rustsmith
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Re: 15 years is way too long

Postby Rustsmith » Sun Jul 22, 2018 11:22 am

I hope that you were not taking a very high dose of ropinirole when you stopped. There is a "rare" condition called dopamine agonist withdrawal syndrome (DAWS), that can cause permanent neurological damage. It occurs from abruptly stopping a dopamine agonist from a much higher dose than those recommended for RLS. I have also seen where it is said that it is more likely to occur when the dopamine agonist was causing impulse control issues.

Other than that, good luck with the DA withdrawal and I hope things go well for you.
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.

curqlink
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Re: 15 years is way too long

Postby curqlink » Sun Jul 22, 2018 4:53 pm

I had slowly over the years cut down from 3 to 1 Mg. I have been at 1 mg for a few months.

ViewsAskew
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Re: 15 years is way too long

Postby ViewsAskew » Sun Jul 22, 2018 6:57 pm

curqlink wrote:I have been on ropinirol for at least 15 years. After reading the info on this site i realized that i needed to get off this stuff. Finally got up the courage last night. All i can say is wow. Even with opioids i only managed 2 hours sleep last night and tonight is even worse. My legs were even driving me nuts while walking the floor. That has never happened. Anyone that can do this with no pain meds has my respect. Your made out of tougher stuff than me.


I tried multiple times without opioids - never could get past day 4 or 5. Horrible stuff, isn't it?

I am currently withdrawing from the opioid I take (am one of the few who has tolerance and I have to routinely stop it to bring the dose back down) and am complaining; your post reminded me that this is a walk in the park compared to what you are going through!
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.

curqlink
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Joined: Sat Jul 21, 2018 6:38 am

Re: 15 years is way too long

Postby curqlink » Sun Jul 22, 2018 8:43 pm

What i don't quite understand is even tho i am sleep deprived during the day. I can control my symptoms easily. Last night i had taken some kratom around 10 pm and everything was going well even tho i was very tired. I was just starting to get my hopes up that maybe i would sleep. Then around midnight the monster awakened. It was on like donkey kong. Me against the monster. I took 10mg of hydrocodone that only slightly slowed it down for around a hour. I had to take a grand total of 25 mg between midnight and 5 am to even think about laying down. I have never took more than 10mg in an entire day. I must of dozed off sometime for 2 or 3 hours. But after that much hydrocodone...i may have imagined it too. lol

ViewsAskew
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Re: 15 years is way too long

Postby ViewsAskew » Sun Jul 22, 2018 10:47 pm

curqlink wrote:What i don't quite understand is even tho i am sleep deprived during the day. I can control my symptoms easily. Last night i had taken some kratom around 10 pm and everything was going well even tho i was very tired. I was just starting to get my hopes up that maybe i would sleep. Then around midnight the monster awakened. It was on like donkey kong. Me against the monster. I took 10mg of hydrocodone that only slightly slowed it down for around a hour. I had to take a grand total of 25 mg between midnight and 5 am to even think about laying down. I have never took more than 10mg in an entire day. I must of dozed off sometime for 2 or 3 hours. But after that much hydrocodone...i may have imagined it too. lol


One of the things that researchers are studying is why we function as well as we do. I can be sleep-deprived (2 to 4 hours recently) and still drive and do things without being sleepy.
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.

curqlink
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Re: 15 years is way too long

Postby curqlink » Sun Jul 22, 2018 11:49 pm

Anytime i get sleepy (even if its in the middle of the day) i can't sit or lay down without getting the crawlies. But for some reason if its daytime its a lot easier to get things under control. Sometime as easy as getting up and walking around for awhile. I have to do that at work in the afternoon often. But later at night its not nearly as easy. I have to be medicated or there's no way i can sit for any length of time. I don't totally understand that.

ViewsAskew
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Re: 15 years is way too long

Postby ViewsAskew » Mon Jul 23, 2018 12:10 am

it follows a circadian rhythm and is worse between 7 or 8 PM and 2-3 AM. Of course, some of us have it most of the day (or all of it), but it's always the worse at night.

I am squirming in my chair (5 PM PDT), but can still sit and type. By 8 or 9 I will have to stand and my midnight I won't be able to at all.
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.

curqlink
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Re: 15 years is way too long

Postby curqlink » Mon Jul 23, 2018 1:45 am

What medications are you able to take?

curqlink
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Re: 15 years is way too long

Postby curqlink » Mon Jul 23, 2018 2:19 am

I assume you have tried Kratom. It didn't work the best for me for opioid withdrawal when i found that tramadol is indeed addictive( After daily use for years it is anyway). But i found that maeng da( which is stimulating) works well during daytime and early eve for crawlies. But it wont touch the late nite stuff at any dose.

jul2873
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Re: 15 years is way too long

Postby jul2873 » Mon Jul 23, 2018 8:02 pm

Kratom did work for my husband, a recovering alcoholic. His careless doctor put him on Oxy after knee surgery, but I managed to switch him to Kratom before he got really hooked. It's also all I use for RLS. But I use many different kinds, and I'm casual about doses--using what I need at the moment and not worrying. Good luck!

ViewsAskew
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Re: 15 years is way too long

Postby ViewsAskew » Mon Jul 23, 2018 10:09 pm

curqlink wrote:What medications are you able to take?


I have tried many - settled on opioids after severe and long augmentation. I am currently going off, however, because of tolerance. Most of us don't have tolerance, but I do. So, the 10 mg becomes 15 which becomes 20, which...and then I freak out (as does my doctor) and I stop. I haven't figured out a way to stop more regularly, but am going to look into that soon.

I also sometimes use kratom, MMJ, pramipexole (carefully!) and gabapentin.
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.

curqlink
Posts: 61
Joined: Sat Jul 21, 2018 6:38 am

Re: 15 years is way too long

Postby curqlink » Mon Jul 23, 2018 11:09 pm

I'm a little ticked at my dr at the moment. I called and talked to his nurse today to explain that i had to get off ropinirol because it just wasnt working anymore and needed to see the Dr to figure out what to try next. His answer was that he would make an appointment with a neurologist if i wanted. I already know what a neurologist is gona say. " Gabapentin" Been there...done that. Couldn't handle the side effects. I feel like i'm basically being thrown to the curb by my Dr because he doesn't want to give me opioids anymore.

curqlink
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Joined: Sat Jul 21, 2018 6:38 am

Re: 15 years is way too long

Postby curqlink » Tue Jul 24, 2018 1:45 am

Anyway...thanks for the feedback from everyone. I find myself being short and impatient the last couple days. I don't like being that way.

ViewsAskew
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Re: 15 years is way too long

Postby ViewsAskew » Tue Jul 24, 2018 8:53 pm

curqlink wrote:Anyway...thanks for the feedback from everyone. I find myself being short and impatient the last couple days. I don't like being that way.


Sometimes I am AMAZED that my husband hasn't kicked me to the curb. All of this takes a LOT of emotional fortitude and sometimes it's just not there.
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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