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

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rikku9
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Cold Turkey off Ropinerole... Day5 of no sleep, how do I know if it's still augmentation

Postby rikku9 » Sun May 08, 2016 3:35 pm

Or if this is just how bad my RLS is at this point? I was holding on strong since I hated the augmentation and how Ropinerole made me feel but I'm starting to lose it. I've gotten absolutely no sleep for 5 days now since I quit Ropinerole cold turkey and see no end to this in sight. I can't tell anymore if I'm still going through withdrawal or not, the RLS is definitely different now than it was on the Requip so I'm starting to freak out that this is just how bad my legs are and always will be now.

For reference I was taking Ropinerole 1 mg for about 2.5 years and then increased to 2 mg for another 2.5 years (so a total of 5 years). Before I was on it my RLS was somewhat managable without anything, I started taking medication after a particularly bad 2 week period where my legs would not quit but had I known how horrible this medication was I would never have started taking it. I decided to quit cold turkey when I realized I was suffering more on the pills at that point than I had when I was taking nothing. My doctor wanted me to increase to 3 mg but thank god I found this discussion board and realized I'd had enough.

Day 1 off of it I could immediately see the difference in my mood and outlook, it was like a fog had been lifted from my brain, the moodiness and depression I had felt for years went away. So that helped my resolve to never take that pill again, and hopefully never take anything again and just deal with this naturally. After 5 days of absolutely no sleep I'm starting to crack and wondering how do I know when the worst is over or if this is just the natural state of my RLS now?

Anyone who has gone cold turkey off Requip, how did you know when the withdrawal was over?

Sorry if this is incoherant, I'm at my wits end

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 » Sun May 08, 2016 4:01 pm

Congratulations for making it to Day 5 :clap: . A lot of people give up before now. You are just about over the hump and it should all get easier from here.

I have not personally gone cold turkey to get off of my dopamine agonist, but there is plenty of information spread throughout this discussion board describing the experience of people who have.

In general, the experience indicates that you should be able to get a couple of hours of sleep tonight. Then, your ability to sleep will increase day-by-day. The time before you return to you current "normal" RLS varies between people from 10 to 28 days. At that point, you should have an idea of what your RLS symptoms are without any augmentation. At that point, you and your doctor can decide what your next step should be. Be very hesitant if your doctor tries to put you back onto a dopamine medication, such as pramipexole (Mirapex) or rotigatine (Neupro). You will eventually augment on these as well and may need to go through this once again. Your best bet would be to try one of the alpha-2-delta ligand meds (gabapentin, Horizant or Lyrica). Each of these has the potential for causing different side effects, but they do not cause augmentation. The only other alternative are the opiate class of drugs. Most people try to delay having to use these as much as possible because of the issues with getting prescriptions and the reactions of others when they find out that you are taking a narcotic.
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.

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 » Sun May 08, 2016 4:22 pm

Thank you so much, I need all the encouragement I can get right now. The most sleep I've been able to get is 5 minutes a few times before my legs thrash me awake again. Daytime I've been ok, the symptoms subside and I've somehow not been totally exhausted (I was more tired on the requip for the last year to be honest) but when i try to sleep all hell breaks loose. If I'm just about over the hump I guess I will keep toughing it out, my life on the medication was horrible, I'm able to see clearly now how negatively it was affecting me in many aspects. I'm really hoping I can deal without having to take any medication but who knows how realistic that is.

Thanks for the reassurance, I was hoping at day 5 that I would have hit the point where the withdrawal was over or at least where I could get at least an hour of sleep, so the fact that I've still not slept at all has thrown me for a loop.

I know most people take an opiate to help them through this but I'm so fed up with drugs at this point that I just want to quit it all and see what my baseline is. Not to mention my doctor is clueless and of no help to me at all. She insisted multiple times over the years that there's no such thing as augmentation even though I explained to her what was happening to me. She is also of the outdated opinion that you can take up to 4mg of requip without issue. I know she would never give me an opiate. I do have an appointment to see a new doctor who works at the Stanford sleep center but that's not for another two weeks. I don't want to lose the progress I've made getting off the drugs now (all this hell for nothing, no way!) so I have no choice but to plough through this.

Your post helped re-motivate me, thank you so much. I'm so glad to have found this group. I'd found some groups before but no one there could share much information on getting off of medication. Everyone here is so knowledgable, it gives me so much hope.

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 » Sun May 08, 2016 4:38 pm

You didn't say how long you have been waiting for your appointment at Stanford, I hope that it wasn't too long. I had to wait for four months to see my new doctor, but it was SO worth it. Like you, I had been augmenting for almost a year, the only catch is that I REALLY did not want to go cold turkey. My RLS prior to pramipexole was already severe, so I knew that I would was going to have to take something once I got off. Long story short, within about 15 minutes of my first opiate I was symptom free for the first time in a year. Talk about euphoria and relief! I am doing great now and only fear that this current government opiate crackdown will result in total loss of an effective med for me because the alpha-2-deltas are not strong enough to control my need-to-move problems.

You might want to consider purchasing a copy of "Clinical Management of Restless Legs Syndrome" by Lee, Buchfuhrer, Allen and Henning. It costs about $25 on Amazon. The authors are among the world wide experts in RLS and it is written in language that you can understand.

Also, if your previous doctor was not monitoring your ferritin levels, that will be something that you can expect at Stanford. This is not a normal blood analysis, but is important in RLS. "Normal" for the general population is 20, but we should have levels of at least 100. Some of us can boost our ferritin by taking iron sulfate pills on a regular basis (this takes months to become effective), others have to go with iron infusions (IV) in order to boost their ferritin. If your level is low (less than 50), increasing your ferritin might help resolve your new baseline if it isn't too severe.

Also, take a look at the discussion in this thread http://bb.rls.org/viewtopic.php?f=5&t=9608. If you have any ideas, please send them in. We want the NIH to get more good suggestions than they can handle. This comment period will impact NIH research funding in this area for the next five years. And, read all the way to the end before sending a comment because there was a problem with the initial email address provided by the NIH.
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.

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 » Sun May 08, 2016 5:21 pm

Thanks!

For people who have quit cold turkey, Is there any clear indicator where they can tell that their symptoms are no longer from withdrawal but there baseline RLS?

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 » Sun May 08, 2016 5:48 pm

I will have to let someone who has been through the process answer that question. All that I know is that you are supposed to start getting an idea after about 7 to 10 days. But I have not been through that process, so I could easily be wrong.
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.

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 » Sun May 08, 2016 6:19 pm

Thanks. Good to know the estimate, I was being too optimistic when I started this, I thought by 5 days I would be over the worst of it but I guess I'm halfway to my goal at least by now (hopefully). So no turning back now... that's what I'm telling myself. I have to do this

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 » Tue May 10, 2016 9:24 am

For me there was no clear line between withdrawal and baseline. It was very gradual. But my case was not quite the same - - - I stopped ropinirole when I augmented but immediately went on pramipexole. When I augmented on that, I went on codeine. When that didn't work well, gabapentin was added in. When that didn't work well plus made me intermittently suicidal, I was taken off that and given 5 mg oxycodone, which was basically nothing (I had been taking 150-180 mg codeine and up to 2100 mg gabapentin daily. ) Then began the worst 3 weeks of my life, and this is the part that I think is relevant to you. I had insane WED/RLS with no sleep and constant torture for 3 or 4 days. On day 3 or 4 I started to be able to fall asleep for 10 or 15 minutes at a time, curled up in a tight ball in the armchair. Eventually I could sleep like that for an hour, two or three times over the day.

It slipped unnoticeably into my baseline WED/RLS, but looking back on it, I would say I had reached a steady state by about 1.5 weeks.
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

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 » Tue May 10, 2016 9:26 am

And by the way, Don't stop now, whatever you do! You will have wasted all this pain and suffering. As it is, you are doing yourself a remarkable service and very bravely! Hang in there, you should see the light at the end of the tunnel very soon if you haven't already.
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
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Re: Cold Turkey off Ropinerole... Day5 of no sleep, how do I know if it's still augmentation

Postby rikku9 » Wed May 11, 2016 1:29 am

I was lucky enough to be able to move my appointment with the sleep specialist and was seen yesterday (I honestly don't know how I would have made it through otherwise). He gave me Tramadol 50mg to take at night to help get me through the withdrawal. Otherwise I would still have been getting no sleep. I was able to get sleep last night for the first time but I could tell before taking the opiate that my legs were just as bad as every. I'm getting so worried that my RLS is just this bad now and that it's no longer withdrawal but I know I'm not being logical. Still, it's already been 7 days of withdrawal at this point and no change in my nightime symptoms.

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

Postby ViewsAskew » Wed May 11, 2016 3:10 am

According to some docs, it will keep reducing for awhile. While many people find 10 days enough, some find it's more like 20, and some 30 before the symptoms are close to baseline. I didn't have a reduction in symptoms for at least 15 days. Other people find it happen in just 4 or 5. Hang in 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.

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

Postby saptree » Thu May 12, 2016 2:31 am

I recently went cold turkey off of 0.5 mg of Requip. I was taking 200 mg of gabapentin while going through the withdrawal. I remember RLS being way, way worse than normal, day and night. After about 15 days the augmentation (morning RLS) part of it went away, and I was back to the normal nightly RLS. It is hard to tell when one ends and the other begins. For me, the ability to take a daytime nap was the sign that the withdrawal was over. I slowly increased to 900mg gabapentin - untolerable, then went back down to 600mg gabapentin. I really didn't get any RLS relief from gabapentin. I did, however, experienced a surge of anxiety and panic attacks and the sensation of my toes strangling each other. Now I'm down to 300mg (side effects gone) and working may way down and off of gabapentin.

I had 5mg oxycodone tablets left over from a recent surgery, and I used one every few days to let myself sleep during the withdrawal process. It's so effective that it is now my main treatment.

Rustsmith mentions that people delay narcotics because how people react when you find out you take them. I hadn't even thought of that, but it's true. I was visiting a relative out of state a few weeks back and explained the oxycodone. She was shocked, then told every other person I was introduced to that I take oxy every night. Well, I am a pharmaceutical chemist and people love to talk about drugs and illnesses with me. So, I indulge. But I was taken aback about how much people cared about my use of oxy. Like I'm going to turn out like Prince or something.

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

Postby ViewsAskew » Thu May 12, 2016 5:32 am

saptree - I was surprised initially, too. After years of being here and seeing it happen over and over, I'm less surprised, but not less appalled.
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.

sleepdancer2
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Re: Cold Turkey off Ropinerole... Day5 of no sleep, how do I know if it's still augmentation

Postby sleepdancer2 » Thu May 12, 2016 8:24 pm

Your description of "thrashing" reminds me of when my periodic limb movements were augmenting on Sinemet. My later movements were better described as flailing when on Mirapex. (There's a link in my profile to a home video if you're interested.) For me, once I finally went off all dopamine related meds (Requip was last), the way I could tell I had reached my new norm was the limb movements had a pronounced change. They no longer involved my arms. They returned to a movement more typically described by patients not yet diagnosed and treated, as in more of a contraction, cramp, or flexion of the toes/feet/lower legs with occasional lower leg movements of a bicycling motion. In retrospect, I kinda wish I had utilized some medicinal options to help me get through those early times. After reading some reports here, I feel I may have suffered needlessly. Like you, I was so leery of meds and their potential problems and chose to not explore those options. In desperation, I began experimenting with using a TENS Unit that I had been given for lower back pain to see if it could help my legs. It took some misguided (rather, unguided) failed attempts at finding an effective placement for the electrodes, but after settling in to what worked best, I have been medicine free for over 5 years now. Not sure if getting the TENS to be effective just coincidentally coincided with the character of my movements changing after augmentation, or of the TENS simply wasn't as effective when augmented. If my memory is correct, my very severe movements settled down in a couple weeks, though I still needed treatment in order to sleep well. Good luck with your journey. Your perseverance thusfar is commendable.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

rikku9
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Re: Cold Turkey off Ropinerole... Day5 of no sleep, how do I know if it's still augmentation

Postby rikku9 » Fri May 13, 2016 7:52 am

Thank you, right now I need all the encouragement I can get.

Sleepdancer2, you mentioned that you eventually became drug free, how long did it take for you to not need any treatment once you weaned yourself off all the meds?

I'm hoping to become drug free as well, my greatest fear right now is that since it's been 5 years since I've had my "natural" (non-drug augmented) RLS, that my current baseline RLS won't be manageable without medication (as in I won't get any sleep at all most nights). It's only been 8-9 days off Requip now but it feels like a lifetime and everynight that I can't sleep without Tramadol makes me feel like a failure.

I bought a TENS unit from amazon but I'm scared to try it. Where do you attach the unit and how many of the sticker pads do you use? Is there a certain setting you find works beter than another? The machine looks very cryptic to me right now and I have no clue where to start with it.


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