Hi everyone just want to tell everyone I have just done 5wks of cold turkey (been horrible) was taking repinarole but got augmentation so the best thing was to go cold turkey, to help me on my way I was taking tramadol to start with but this was making me itch all over so I now take oxycodone + trazadone, this med was also making me itch & giving me a dry mouth so I wrote to DR B & he told me I was taking the wrong anti-histamine so he told me to take claratyine,& this has seems to have do the trick, so if anyone out there is suffering with augmentation (I have suffered with RLS for 6yrs or more)I'm afraid this is the only way to get you of the dopamine drugs, its hard, very hard, but it can be done. How long it will last for I don't no but I no I no longer suffer with augmentation. Thanks
cold turkey: Hi everyone just want to... - Restless Legs Syn...
cold turkey
Well done hope it's getting easier. I came of Tramadol last year wrote a blog on how I was feeling on this site. Took me 7 months but I did it. Hope you get over the withdrawals soon. X
thanks for your support but I didn't no you got withdrawals from tramadol,when I wrote to DR B he told me it would take between 4/6 weeks for the dopamine drugs to get out of your system, like I said previously its been 5weeks being of the dopamine, it sounds like its going to take longer, because I still get the odd RLS not as bad though,
Connie, again you havent actually gone cold turkey, you have had the help of the pain meds with the withdrawals. Going cold turkey means stopping the med and having no back up med to help with the withdrawals. You have stopped your med BUT had the back up med. Glad you are doing well though and it can take weeks for some people to feel so much better without the augmentation. Those who are taking a higher dose of the dopamine meds i am sure it takes longer. Oh and i am glad you have now got the anti-histamine right, as i did tell you anti-histamines can make RLS worse. x
hi Elisse nice to hear from you, to me, it feels like I have been through hell,that's why I call it cold turkey, some days I don't even take any meds, but still get the RLS symptoms, that's why I have to keep taking the meds, some days are ok some days are terrible,anyway hope your doing ok xxxxxxxxxx
Hi Connie, you will always have to take meds, if you dont want any RLS symptoms. RLS is for life unfortunately. Meds will always be needed to take. But i am still glad to hear things have improved for you. Also meds can let us down for no reason, and many of us get nights when nothing seems to work. No meds seem to work 100% all the time. x
I too am going off ropinirole due to augmentation. I am using oxycodone to help me through the withdrawal period. Also on neurontin. So far I've cut the ropinirole dose done to 1.5 mg. I take .5 in the afternoon and the other 1.5 at bedtime along with the oxycodone and neurontin. Doing pretty well. My temperament however is not doing so well. I have some depression, I think, and am quick to anger and paranoia. Hopefully this is a side effect of withdrawal and will clear up once I'm off the drug. I wish you well as you adjust to life without ropinirole.
thanks northCarolinain stick with it,you will feel tons better once the augmentation has gone, it will take time but you can do it, im sure. I actually take 10mg oxycodone + 50mg of trazadone this is an anti-depressant, it also acts as a sleeping aid as well, that's what I take it for SLEEP,& it does work, for me anyway. Did the repinarole stop working for you? Or did you just have enough.
Iv had that bloody cold turkey Conie it was awfull I feel for you
Sorry but what is augmentation ?
Augmentation is when you are taking a dopamine agonist med like Mirapex (pramipexole) Requip (ropinerole) and after starting off taking a low dose, you find that dose isnt enough to work anymore. Your RLS symptoms come back and seem to be worse, other parts of your body can also start having RLS that it didnt before, arms, torso. So, you up the dose to get relief, which works for a while then again your RLS symptoms come back again. That is what augmentation means. Tramadol can also cause augmentation but its rare. Once augmentation is happening, then you need to get off dopamine med as your RLS will not improve until you do. Hope that explains it for you.
Hi sallisC augmentation is a rebound of meds your taking they stop working for you so you have to increase your dose to stop the RLS but then that stops working its a viscous circle, Elisse describes it to a tea, but its not nice. Its only when you are taking dopamine drugs, please reads what Elisse as put
Connie, rebound is different from augmentation. Rebound is when the med you are taking is wearing off before your next dose. Once you take your next dose, then the RLS calms down and you sleep. Unlike augmentation when your symptoms do not calm down when you take your next dose. x
thank you Elisse I thought it was the same but apparently not.
Hi Connie good to hear you are still doing well off the Ropinerole x
Hi Connie 50 I agree with you and the Dophamine tabs once I went from 2tabs to 8 Did I know about it ,but the docs just say we will increase the dose and you think that's the answer ,well anyone who takes the trouble to send there news in good of you x
thanks beady3 yes I totally agree with you,as far as the GPS are concerned I have found they don't fully understand what RLS is all about, coming of the dopamine drugs was the best thing I ever did (its a killer) but you have to stick it out if you want to come of the dopamine, its not easy I have been of it now for 5wks & oh boy didn't I notice the difference, I can actually sit & watch TV now as before I was up &down all night I used to dread going to bed because I no what was going to happen, but luckily I have passed that stage,couldn't do it without pain drugs though I might be on them for the rest of my life but its better then the RLS.if you want to no what pain meds im on just send me a private message
Hi Connie,
I'm very happy to hear that you got away from ropinerol. Augmentation effects different people in different ways. I didn't have any for about 3 years and then once it started, I went from 1mg of Requip per day to 3-4mg over the next 3 years. It was awful. Then when augmentation started again, my PCP sent me to a neurologist as he wasn't going to prescribe me a dose over 4mg. The neurologist explained that the augmentation would continue and that I would have to come off Requip after I'd been on the max dose (for non-Parkinson's) of 12mg. He quickly had me go up to 9mg per day and at the time I had no clue that the RLS max is typically 4mg. He has thought about neurontin, but opted to stay with Requip. He also thought about oxycodone, but j told him that given in a recovering alcoholic, I would not take any narcotics. I really wish he'd taken that cue and told me what can happen with Requip side effects, but alas, he didn't. If you've heard any horror stories or even experiences them, you will guess what happened next. Anyway, after a couple years, my psychiatrist asked me the dosage I was on, which was still 9mg and he recommended I call my PCP and get off the Requip immediately, as it was causing life changing events. My PCP put me on 900mg of neurontin per day and it has worked perfectly. I don't know if I should have expected additional withdrawal symptoms or if the neurontin took care of them because I had none. I just remember a feeling of waking up of coming to, about 2-3 days off the Requip. Scary stuff. I hope it continues to go well for you and to anyone else, if your doc suggests a dopamine agonist, please ask about all the side effects and how they may impact you. God bless! ~Jerry
Hi Graffamj, Thanks for your story and experience of being on Requip and having augmentation. I cant believe you were taking 9mg by your neuro and he/she didnt know what they were doing going beyond the max of 4mg. You would think a neuro of all people would know that. Thank goodness you got the help you needed to get of the Requip and i have to say, you are one of the first people who has said they didnt have any withdrawals. Most people go through hell, even with a strong pain med to help them through. The dosage these days for Requip has been recommended to be no more than, 1mg because of the augmentation that Requip causes.
Hi Elisse,
Yeah, next week will mark three years since that dosing "error," as I would call it. I've been off for about a year and feel great. It wasn't till after I was off and had begun trying to research how this could have happened, that I learned what augmentation was. I got lucky with the lack of withdrawals, but given all I went through during those two years - and worse, what I put my loved ones through - I would have traded for the withdrawals or better still, never to have been in it at all. I realize that doctors make mistakes and I can forgive those to a point, but I really wish the manufacturers would put stronger warnings on these meds and educate the doctors who are prescribing them. I hope to get before the FDA here in the states to force that hand. Enough people have suffered unnessicarily!
Hi Graffamj I have received a post (don't know if it was meant for me or what) but it was addressed to Elisse,& I have read it, can you explain what you went through. I have just come of repinarole got really bad augmentation, it was hell, but I did it been of the dopamine drugs know for about 5wks,&like you said in your post there needs to be something written by the manufacturers explaining the stronger warnings on these meds, would love to no what you went through,
Hi Connie & Elisse et al,
Sorry about the confusion. I should have addressed my response to the group as it was intended for that, but I was replying to a post in the thread.
I'm happy to share my experience with Dopamine agonists. I'm sure you will come across others - mostly folks with Parkinson's because of the dosage - who have experienced what I did. Please note that I'm writing this to educate and help, but not to whine or complain. The past is just that, but I believe there is something that can be done to help others.
Essentially, I was put on Requip in early 2005, which was just before the package inserts were updated to indicate that the medication could cause patients to experience "unusual behavior." A year later it was changed to include side effects of "impulse control issues," but what they weren't saying is that in rare cases, people may become compulsive gamblers, shopaholics, or sex addicts. Remember, this is all about pleasure receptors and a medication that is supposed to substitute for a lack of dopamine output. The problem is that in some people this is magnified to a horrendous effect. The Mayo Clinic did two studies in the late 2000's that found a direct correlation between compulsive behavior and therapeutic doses of a dopamine agonist. (Therapeutic being over 4mg for Requip and over 2mg for Mirepex) the study found that in these doses or greater, 18% of patients were experiencing "extremely compulsive" behaviors primarily with gambling, sex, and shopping. Patients had no control over their actions and suffered an inability to stop or alter this behavior until being taken off the medication or having it lowered. In almost all cases the behavior stopped within a couple days, but the resulting life-altering damages had already taken their toll.
So... Flash forward to exactly three years ago when augmentation got to the point where 3-4mg of Requip was not enough. My PCP referred me to a neurologist because he would not prescribe a higher dose. I went to the neurologist who worked me up for MS, Parkinson's, and did a full neurological exam. I explained to him that I am a recovering alcoholic because he had told me that it may be a good idea to change over to oxycodone. I refused to take oxycodone and advised him that I would not take any narcotics that could impact my sobriety, which was over 11 years at the time. He also thought about gabapentin, but ultimately decided the severity of my RLS would render that ineffective. So he told me to come back in 3 months time and in the interim he counseled me to up my Requip to 6mg immediately and to go up to 9mg by the time I saw him as long as I could tolerate it. I ask what side effects I could expect and explained that the only ones I was used was drowsiness and grogginess. He said that I shouldn't have any other issues, but that those would likely intensify. He also said that after I reached 12mg per day, I would have to come off Requip and I would then have to consider a narcotic. I again explained that wouldn't be an option and we could discuss late. Three months went by and the drug was helping my legs and other side effects were mild except that I had also been worked up for narcolepsy and cataplexy because during the day I was losing contiousness. I would literally be sitting at my desk and then pass out. I'd wake up after a couple minutes but it was sudden and happened without warning, but never when I was doing something active - almost always when I was looking at a monitor or TV screen. As you might imagine, the aforementioned work ups were negative for the other conditions and my PCP was perplexed as everything appeared normal. So after seeing the neurologist I happened to stop by a casino with my then wife. She and I had been to casinos a couple times a year when in Lake Tahod skiing and would go to restaurants housed in them. From time to time we would play $25 or so, but neither of us found an attraction to gambling. We were there to ski and not to blow our hard earned money, but back to September 2012, we stopped into this new casino near where lived because we were bored and thought we'd check it out. She played $50 or so and lost all of it and I played the same amount of time and won about $150. It was like a switch went off in my head. I couldn't wait to get back and started going up to twice a day. I would sneak out in the middle of the night, go before or after work, on holidays, or whenever - I was utterly consumed. I kept betting more and more and always played till I lost everything. One day I won multi jackpots, was up to $22,000 and left a few hours later with zero. There was no control and i didn't care. After she found me out I started gambling online or going to out of state casinos in the middle of the night. I agreed to go to gamblers anonymous and it did nothing. After just 6 months I had blown over $150,000 which consisted of all my savings, retirement money, maxed out every credit card, you name it. At the same time, we separated and my psychiatrist was perplexed. He didn't understand why a 12-step program want working when I had had so much success with one before. Over the next year I sold much of our stuff, all of my belongings, and began stealing from family and friends with no regard for anyone, including myself. During this time I list my job, my marriage, my family relationships, my house, my boat, you name it. And any dollar I got went to online gambling - and I never cashed out a winner - never. I was like a heroin addict needing that rush and I had become a monster. I dated other women and stole from them too. I lost those relationships because of that and because I was unable to function normally. And yes, I was still passing out. I became a regular customer at a number of pawn shops and prior to this, I'd never been in one. So then in June of 2014, my psychiatrist asked me what my Requip dosage was and I said 9mg per day. He freaked out and explained he'd never heard of a dose that high, even with the Parkinson's patients he knew, but especially with an RLS patient. At the same time he had found a couple articles about a rare Requip side effect that caused people to act just like me and had also seen a couple lawsuits. He recommended I get off it asap and I went to see my PCP who suggested 900mg per day of gabapentin. Three days after being off Requip it was like a fog has lifted. I not only didn't have a compulsion to gamble, but moreover, I couldn't comprehend why anyone would want to. Furthermore, I stopped passing out too. I was pleased to know that Requip had caused all this and that it was over and I was also mad as hell because I couldn't understand why no one examined that it could happen and that the manufacturer warning was still very vague.
So in the past year I've been trying to rebuild my life and relationships, but so much has been destroyed or lost. I suffered from two nervous breakdowns over the past three years and was even in intensive outpatient group psychotherapy for compulsive gambling, which didn't work because it wasn't like a regular addiction.
So yeah, I d been through a bad patch, but I didn't drink, celebrated 14 years of sobriety, regained my family's trust for the most part, and have pledged to share my story and push to have GlaxoSmithKline update their warning labels to include what's called a "boxed warning" and want any and all potentially prescribing physicians to be educated on what this drug (and other dopamine agonists) can do. There is no reason that one single additional person had to go through something like this.
That's my story!
Sorry for such a long list and may Hod bless you all!
Jerry
WOW, you certainly went through hell on that high dose of Requip, more than just augmentation..!! So glad to hear you are getting your life back on track now. Good luck for your future. 
P.S. Feel free to share my story and/or if you have suggestions as to where I can share or should, let me know! Thanks!
Hi there your story is fascinating reading, glad your more or less back to normal again. But this is the first time I have read your story, I know that dopamine drugs are not good for you, I also no what they can do to your brain,(apart from augmentation) & all, so keep up the good work.
Hi Graffamj interesting reading,I just want to say I was on Requip and I don't care what anyone says they made me compulsive I used to buy skirts I had dozens folks would say I dont know anyone who has so many skirts as you ,well I have been of them 2years now and there is a difference I am on Tramodol now all going quite well
There have been lots of stories of people who have lost everything due to the gambling when on Requip. Lost jobs, family, houses etc etc. Plus lots of lawsuits that have been going on and i think still are. Mirapex also can have that affect on some people too, especially when taking high doses of both of those meds. I am thankful that i have never experienced any of those side effects by taking Mirapex (pramipexole) but i have never been able to reach beyond taking one pill. (due to being sensitive to all the RLS meds) Nor have i experienced augmentation, but have felt the withdrawals when i have had to come off pramipexole because of my sensitivity to it.
You will always see me question the dose people take of those meds when i see they are taking a too high dosage. At least now augmentation is now being reconised as a big problem too. So, the RLS experts are now recommending only taking the lowest dose possible.
Wow big guts I’m suffering the same thing seeing my doctor on Monday got the rls worse after doing 3 test but I narrow it done to electric nerve test and mri I thought I was going to die my doctor says 6 to 18 months but I rather go cold turkey let see
hiya Bat3353 just seen your message about C B G D its not nice is it, my walking as got a lot lot worst until they tell me I have to have a tube put in my stomach, I think I will be of to Switzerland because I saw what it did for my friend,he finished up in a Hospice anyway Bat3353 apart from the C B G D how's your legs mine especially the right one its sending me barmy it doesn't make any difference what I take the pain is still there.take care all the best SUEXX
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