Cold Turkey off Ropinerole... Day5 of no sleep, how do I know if it's still augmentation

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
sleepdancer2
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Joined: Sun Jun 29, 2014 7:46 am

Re: Cold Turkey off Ropinerole... Day5 of no sleep, how do I know if it's still augmentation

Postby sleepdancer2 » Fri May 13, 2016 9:01 am

I was using TENS while weaning off Mirapex. While I can miss an occasional night, I've never had an extended period of not needing treatment. What I did find is that after living through augmentation, my "normal" symptoms that I once thought were intolerable that drove me to treatment were much more tolerable now. Guess it's relative. I'm not Catholic, but to borrow (very) loosely from their theology,when you've already been to hell, what would there be to fear in going back to purgatory?

I am the first to admit I don't have a clue what I'm doing with the TENS aside from knowing that using 4 electrodes in a wide square on the lower back - actually buttocks area - gives the best results. I began using it as prescribed for low back pain. I've changed machines over the past 5 years and i don't have a clue what my settings are. Just played around with it and made my best guess. Ideally one could be instructed by a physical therapist on the best placement and settings for very low back pain, then go with that. Do you have any friends who might be knowledgeable?
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

rikku9
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Joined: Sat May 07, 2016 1:25 pm

Re: Cold Turkey off Ropinerole... Day5 of no sleep, how do I know if it's still augmentation

Postby rikku9 » Fri May 13, 2016 1:06 pm

Thanks. The TENS unit I have only works for 15 minutes before it auto shuts off. Is yours like that too or do you have it on for longer than that? Do you use it right before going to bed or as you are in bed?

I tried the TENS unit on my calves and it seemed to feel good but after falling asleep for 20 minutes I still woke up from the RLS pain.

I'm hoping that my "normal" symptoms are tolerable now but I have yet to reach them I think. right now my symptoms are such that I still get no more than 20 minutes of sleep at a time

sleepdancer2
Posts: 165
Joined: Sun Jun 29, 2014 7:46 am

Re: Cold Turkey off Ropinerole... Day5 of no sleep, how do I know if it's still augmentation

Postby sleepdancer2 » Sat May 14, 2016 6:18 am

Mine is set to shut off after a bit too. Often I restart it and go through a couple cycles. I've read that people have experimented with placing the electrodes on trigger points or something like that. Well, let me tell you, I tried placing the electrodes on my legs. Made me almost willing to cut my legs off with a rusty hacksaw. Nothing short of torture. I have tried about every square inch of leg placement, but the stimulation just antagonized my RLS. The concept of interferential treatment means to interfere between the point of pain and the brain, and the lower back works because nerves leave the spine, go across the buttocks and down the legs. Theoretically, the TENS fills the nerve pathways with sensations, leaving no room for the other sensations to get through. Let me know if buttocks placements helps you. Hopefully you've read all the literature with the TENS, including where NOT to place electrodes. In this case, not over the spine. Good luck.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

ethan
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Joined: Mon Apr 04, 2016 2:39 pm

Re: Cold Turkey off Ropinerole... Day5 of no sleep, how do I know if it's still augmentation

Postby ethan » Fri May 20, 2016 12:00 am

I have a somewhat similar thread going. I spent about 5 weeks weaning off of Mirapex. 2 weeks ago I stopped it completely and it has been brutal. I have some of the same fears that you have- specifically I am worried it made my movements permanently worse. Others have said it can take a month to get back to baseline. I am using 2mg of dilautid and I don't think it is doing much. Are you in a state where you can access medical cannabis? Although it has not been a panacea for me...it helps.

You are not alone in your misery- I am in it as well.

badnights
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Re: Cold Turkey off Ropinerole... Day5 of no sleep, how do I know if it's still augmentation

Postby badnights » Fri May 20, 2016 9:27 am

ethan I can understand why you're miserable, 2 mg hydromorphone (Dilaudid) would barely touch my symptoms on a good day. You're withdrawing from a DA, so I can imagine it's almost like taking nothing. I'm glad you can get hold of MM - have you tried to order kratom?

I am not sure what your relationship with your doctor is, but if you haven't already, you might want to try to describe your condition to him/her- specifically, the amount of sleep you're getting, the hours per day you experience the torture (and describe it to him a bit, they don't always know what we're talking about or could use a reminder), and the effect it's having on your life (can't work, can't read, can't think, etc). Then ask - can he figure out some way to ease the torture until the DA withdrawal is over. Tell him you've heard it can take as long as a month.

He might be too terrified of being sued to go above 2 mg HM, which is almost criminal. You and rikku9 and I don't know how many other people here are suffering to an extreme degree, and in my mind - needlessly. If only the doctors who prescribed DAs so freely to WED/RLS patients would feel a tenth as free about prescribing opioids, which are the only medications known to stop the DA withdrawal symptoms.

Please don't worry about permanent worsening. There is no evidence of permanent changes, and those of us who suspect it might have happened didn't really establish a new baseline to find out before adding other medications in. As Ann said in another thread, there are cases where the severity jumps suddenly without any DA involvement. And if it jumps, whether from DAs or something else, no one has figured out if it stays that way forever, or only for a period of time and then lowers again. We're all just guessing about these things, so why not guess something good for yourself.

You both just hang on and keep yourselves alive so you can see the end of this and smile again. You will, you know. Smile and laugh again. xo
\
EDIT: PS I should have read your other thread first :)
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

rikku9
Posts: 22
Joined: Sat May 07, 2016 1:25 pm

Re: Cold Turkey off Ropinerole... Day5 of no sleep, how do I know if it's still augmentation

Postby rikku9 » Sat May 21, 2016 6:09 am

@ethan, I'm so sorry to hear that. I think what people are saying is right, that the worst is DA withdrawal, I think I am finally very very slowly starting to see slight improvement but it's maddenly slow in coming. So far the only thing that has helped is Tramadol which I finally managed to get from my doctor


@badnights
"If only the doctors who prescribed DAs so freely to WED/RLS patients would feel a tenth as free about prescribing opioids, which are the only medications known to stop the DA withdrawal symptoms. "

God how true that is, it's unfair how they so freely give us DAs and then are so unwilling and unknowledgable when it inevitably turns our lives upside down.

And thank you again for helping me and others through this ordeal. You have no idea how comforting it is to hear from people who have knowledge and experience on this. I still fear every day that I will never get better but I realize that I just need to wait it out and try to help myself since doctors are so unwilling to do so.

badnights
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Re: Cold Turkey off Ropinerole... Day5 of no sleep, how do I know if it's still augmentation

Postby badnights » Sat May 21, 2016 8:50 am

I still fear every day that I will never get better but I realize that I just need to wait it out and try to help myself
Keep telling yourself these truths; I'm glad you can think that way despite the situation you're in.

I will have to go off my medication sometime in the next few months and I am, frankly, filled with terror when I think about it. Trying not to be, but that's what lies beneath my rationality. How I wish they knew how bad this disease can be.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

ViewsAskew
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Location: Chicago

Re: Cold Turkey off Ropinerole... Day5 of no sleep, how do I know if it's still augmentation

Postby ViewsAskew » Sat May 21, 2016 9:09 am

It won't be like DA withdrawal, I don't think, Beth, but the idea of ALL those symptoms terrifies me, too.

All we can do is hang in there and remember that very little in the world in permanent. It WILL change.
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.

Rustsmith
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Re: Cold Turkey off Ropinerole... Day5 of no sleep, how do I know if it's still augmentation

Postby Rustsmith » Sat May 21, 2016 12:06 pm

I saw something earlier this week that caused me to think that I might have a consulting gig coming, but this potential client requires drug testing for anyone doing work at their facilities. That means that I would have to get off of both methadone and MMJ for at least a week before being tested and then again if I actually had to go into the field or to an office. That has caused me to do quite a bit of soul searching about whether I would accept the work offer if it comes. I have rationalized that I could go back on pramipexole (and reduced sleep) for a short time, but then at a different level I keep reminding myself that I am fortunate to be in a position that don't need the work and would only be doing this to help out a good friend.
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.

stjohnh
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Location: Palo Alto, California

Re: Cold Turkey off Ropinerole... Day5 of no sleep, how do I know if it's still augmentation

Postby stjohnh » Sat May 21, 2016 2:43 pm

Rustsmith wrote: ... That means that I would have to get off of both methadone and MMJ for at least a week before being tested ...


Many employers make an exception for people with medically prescribed narcotics. Also, since you are a regular user of MMJ, you will probably have to be off it for at least two weeks before you will have a negative urine test. I've had a fair amount of experience with marijuana urine tests. My teenage daughter had a serious marijuana problem a few years ago, I ended up doing a year of daily urine testing and another year of intermittent urine testing.
Blessings,
Holland

Rustsmith
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Re: Cold Turkey off Ropinerole... Day5 of no sleep, how do I know if it's still augmentation

Postby Rustsmith » Sat May 21, 2016 2:52 pm

This particular client isn't so much concerned with the legalities of narcotics use as they are with what they feel is impairment of judgement or speed of reaction that might lead to unsafe actions in an environment that has higher risks than the general population would be exposed to. They also look at and test for alcohol use with zero tolerance.
And then there is the possibility that the client would need for me to travel to a Middle Eastern country that from what I can find out so far does not allow any form of narcotics, prescription or otherwise.
Some people simply have no sense of humor :D . And these same people really don't care how much that might make you suffer :( .

However, it is useful to know that it would take 2 weeks off of the MMJ to get a clear test. Thanks
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.

ViewsAskew
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Location: Chicago

Re: Cold Turkey off Ropinerole... Day5 of no sleep, how do I know if it's still augmentation

Postby ViewsAskew » Sun May 22, 2016 6:24 am

Definitely no sense of humor!!!

I had to take a pee test a few years ago for a consulting gig - I didn't know it when I interviewed. When I got the job, I received a call telling me what to do. I almost backed out. I decided to go for it - if they had no tolerance for legal drugs, then I'd be screwed. Apparently they didn't even test for legal things, as they never asked me for a script for the opioids.

I didn't know much, so I did some research. You can buy urine that you can tape to your belly and it comes with a heatpack so it's 98 degrees. I didn't do it, but I was amazed at how much effort we humans will go through to keep our happy substances in regular use :-).
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.

Rustsmith
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Location: Pueblo, Colorado

Re: Cold Turkey off Ropinerole... Day5 of no sleep, how do I know if it's still augmentation

Postby Rustsmith » Sun May 22, 2016 4:35 pm

stjohnh wrote:
My teenage daughter had a serious marijuana problem a few years ago


Out of curiosity, what does your daughter think about her father using mmj now after her issues as a teenager?
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.

stjohnh
Posts: 324
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Cold Turkey off Ropinerole... Day5 of no sleep, how do I know if it's still augmentation

Postby stjohnh » Sun May 22, 2016 6:42 pm

Rustsmith wrote:
stjohnh wrote:
My teenage daughter had a serious marijuana problem a few years ago


Out of curiosity, what does your daughter think about her father using mmj now after her issues as a teenager?


She is still emotionally fragile and has a personality disorder. Since I consider her still at risk for addiction problems I have not told her that I use medical marijuana. My older daughter knows I use it and doesn't have any particular opinion one way or the other. She has smoked pot in the past, but doesn't now, she says all that it does is make her sleepy. Since I mostly use it for sleep, that fits with her experience.
Blessings,
Holland

jul2873
Posts: 345
Joined: Thu Nov 15, 2012 7:32 pm

Re: Cold Turkey off Ropinerole... Day5 of no sleep, how do I know if it's still augmentation

Postby jul2873 » Sun May 22, 2016 7:19 pm

Steve, I've read frequently on reddit that kratom does not show up on regular drug screening tests. Apparently you have to screen separately for kratom and few places do. So perhaps you could use kratom for awhile.


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