First Thank You ,p1pp1ns, for turning me onto Jenna's article. From there I learned about DAWS. I read 11 articles in which some were clinical studies and some were written from actual people trying to get off dopamines. Below are a few links that I felt gave the most information.
This article is actually written by a person who has DAWS. It shocked me when I read it. Long term and sometimes permanent side effects are discussed here just from staying off dopamines. Make sure you read the comments at the end.
I haven't herd anything about DAWS on this site. Please note these are only 3 articles out of 11 that I read. Discuss your discontinued use of dopamine drugs with a doctor.
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carla6556
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Hi Carla, just back home and read your new post.Glad you have an appt sorted out.As the neurologist says some of your symptoms may be due to something else I see you have a brain lesion.The problems from mirapex augmentation will be worsening of restless leg symptoms , starting earlier in the day and spreading to other parts of your body.Staying on mirapex will make these symptoms worse over time.Yes I am aeare of DAWS I refer to it as dopamine withdrawal and I have read those links when researching for myself. It is usually at its most extreme when very high doses are used parkinson disease but can occur when meds used for rls.This is why ee always say mirapex withdrawal is vv difficult for many people , requires strong painkillers and must be done under doctors supervision. Let us know hoe you go on weds.Best wishes..kim
Right big difference, like Elisse says between addiction and dependence. Will post on that, but dopamine is not literally addictive, not in the same sense as heroin, for an extreme example , or other meds used for RLS. Your body gets used to them being there, but does not mean the dopamine meds are addictive. They aren't.
The dopamine agonists are not addictive you become dependant on them, there is a difference. They set the recommeded dose for RLS, but they didnt know augmentation would result in taking these meds to start with. The higher dose you are on the worse it is to get off them. That is why they are now saying keep to the lowest dose possible. Augmentation could still happen on a low dose, but it would be easier to cope with any withdrawals then on a higher dose. I was on a low dose of Pramipexole, and had to change to another med for a while. I had one really bad night which i put down to the withdrawal from the dopamine from by body. We are all learning along the way about the meds and what would be best for us to take. Even it seems the experts. I recommend to anyone who wants to up their dose not to, and tell their doctor not to, tell your doctor of augmentation, tell your doctor of the now recommended dose, dont let your doctor increase the dose. We have to be proactive, its our RLS and our health.
All of this info about DAWS is really scaring me. I live in New Jersey. My dr. never mentioned any of this to me. I don't think my dose is too high 3 tablets at night 0.125 each and I also take 3 oxycodone throughout the nite .5 mg each. Why would the dr. leave out this important information. You just can't win with this RLS.
Lorri214...I felt the same way. I'm on 2mg for 16 years of mirapex. I decided to stay on. In the meantime I made an appointment with a sleep doc at University of Florida. She said mirapex for rl is usually between 1 and 3mg!!! I was fine. She denied all the side affects. My sleep doc and any other doc I have been to tell me I am making a big deal out of the mirapex side affects
So I thought about it last night. Look on my profile and see all the symptoms or what ever I have it listed umder. Ok...I have sleep apnea. Cpap was 20/18. That's really high. I don't use a machine cause it caused anxiety attacks. Sleep detravation can cause day time drowsiness confusion memory loss. Etc. Now I was diagnosed with depression in 09. I take nothing cause I don't like the stuff. So I'm dealing with a cycle that never ends. Now maybe the mirapex makes it worse some. There is no way of knowing.
My other question I asked the readers was u can take 3mg for Parkinson and no one says anything but u can't take it for rl??? Why??
IDK.... I have a lot of questions myself but I'm going with the sleep route and see what happens.
Plz remember everyone is different and medications respond different to us all. If u have a doc that u believe and trust in...stuck with him.
Carla, I also have sleep apnea. Don't remember what the numbers are. For at least 2 years I did not use the CPAP. It was uncomfortable or I could not stay still long enough. My last visit with the dr. - he told me to definitely use the CPAP because it could affect your heart etc. So now for the past two months I have been using the CPAP for the most part. Some nights I take it off in the middle of the night. I thought that I would not wake up as much using the CPAP, but that is not happening. I hear people rave about how great they feel using the CPAP. However, I don't feel that great or rested the next day. I think that is due to the RLS meds I take. I would just ONE day like to have a burst of energy and feel alive. Oh, that sounds horrible. Sorry I am greatful for the days the RLS is not so bad.
Lorri, that dose is ok, altho they say now it should be just 2 0.125mg. But dont be tempted to go higher or let your doctor up the dose. If it stops working then change meds.
Yes, I do. My neurologist wanted me to go on it about 20 or more years ago, but I refused because I was afraid to. Now here I am taking it with the Mirapex. He told me I would not get addicted to oxycodone way back then. He was a great dr who was on the Board for the RLS Foundation here in the states.
My RLS occurs at night mostly when I sit to watch TV. The show has to be really interesting to keep my legs quiet. Every night is different. Some nights I can watch tv and be quite comfortable. One night this week around 7 pm, I had an RLS attack and I went out for a walk. Took a little while to work out the RLS. I wake up 3 to 4 times a night, most times not from RLS. I thought by using the CPAP the waking up at night would stop. I will ask my dr. about that. If we go for a long car ride during the day, sometimes I get RLS. Some nights, The RLS attack is so bad that I can do nothing to control the legs. Thank God, that is not every night. In order to not have an RLS attack, I have to have my mind so engrossed in doing something interesting or that requires a lot of thought. That helps a lot. What do you take now that you are off Mirapex?
Hi lorri mine sound pretty much like yours and I got arm symptoms last couple of years.At the moment I am taking strong painkillers for another 5 weeks.At the end of that time frame I should be back to where I was before I started taking mirapex(probably bit worse due to natural progression).Not decided yet which route to take after that.Have the choice of no treatment(unbearable! ),trying another dopamine agonist, staying on painkillers or tryinh anti convulsants eg pregablin/gabapentin.Or even a combination of them.Will wait and see how bad symptoms are. X
I was on Mirapex for 18 years. I decided to stop cold turkey after discussing the long term effects of taking Mirapex, such as Alzheimer's. This really upset me because my Mother has Alzheimer's and it is so sad being with her now.
I talked to my Doctor and Pharmacist how I should go about doing this.
It is very scary for me to even think about stopping the Mirapex. I have suffered from RLS for so long and have other health issues but the RLS is one of the worst things I have ever had to deal with as far as my health is concerned.
I started taking a strong Iron supplement along with Calcium Citrate and Magnesium.
I stopped taking Zantac for my Acid Reflux. I don't drink alcohol or smoke or drink anything with caffeine in it.
My Doctor has prescribed hydro morphine, which I take only if I start to feel my RLS coming on.
It has been working so far. I have had to take it once a night.
What I would like to know is are there any of you out there who have stopped taking Mirapex?
I am having horrible withdrawal symptoms such as irritability, depression, anxiety, headaches, really bad nausea and throwing up, but not all the time.
I have been off the Mirapex for three weeks and the symptoms aren't getting any better. I will persevere because I will never take Mirapex again.
Please help me! RLS has also run my life. I have had it since before anyone knew what it was and I was almost suicidal until a Neurologist told me what it was. Before that I used to call it Crazy Legs!
A lot of this DAWS information is new, and many many doctors have NO idea because they have not dealt with it or did not understand it. They are learning with us. Dopamine meds are NOT the only ones to take for RLS. As long as you stay on a low dose, and do not increase it, augmentation is less likely to happen. But, the oxycodone should be helping you as well, Lorri.
Carla, people who take the dopamine's for Parkinson's dont get augmentation from them.... only us RLSers. Also PD is different from RLS. I think PD the dopamine in the brain dies, for RLSers, they say we cant make enough. I might be slightly wrong with my explaination i am sure someone will let me know. People with PD take a much higher dose than we do for RLS. I am sure anyone on here with PD will help me out and let us know what side effects they get if any. I am sorry your appointment was rubbish, every doctor or so called specialist you have seen hasnt a clue. Dont give up, your just havent found the right doctor yet. He/she is out there some where.
I am primarily a Parkinson's sufferer. I used to take 1.06mg x 4 per day of Pramipexole.
Now I take a prolonged release (PR) version. This means 1 tablet per day instead of 12. Each PR dose is 2.62mg lasting for 24 hours. Only 1 increase available to be on the maximum dose allowed.
I once tried weaning myself off this drug. This was when I found I had RLS. When trying to sleep I would get RLS twinges (I always think these RLS twinges are like an electric current surging through your body) in both arms and legs simultaneously about every 15 seconds. Sleep was not possible. I was glad to restart taking the Pramipexole.
The only side effect I had was excess sleepyness for a handful of days, with each dose increase during titration. I also had orthostatic hypotension but I already had that before taking Pramipexole.
The beneficial effects were 1. better co-ordination of the hands, reduced bradykinesia, the finger / thumb tapping that your neurologist gets you to do was much improved and best of all 3. I had started to get quite bad dandruff (a PD symptom) and this was cleared by the Pramipexole. It took some months for these benefits to become clear.
I have not experienced augmentation with any medication ever.
I recently went thru the detox from Mirapex,, and am still suffering the consequences. It's a miserable process, but I've made it so far. My sleep Dr. now has me on Horizant, 1200 mg.s. Although the name is actually Gabapentin enacarbal, it is NOT the same as plain Gabapentin. Has anyone else tried this medicine after withdrawing from the dopamine meds? I'm still getting rls every night, about an hour to an hour and a half after I go to bed. Hoping this will go away eventually along with some of the other side effects of withdrawal, but am mainly wondering about the Horizant. Anyone on this as well and is it working? Thanks!
Hi soup2, glad you made it through the detox from Mirapex. I know about Horizant and how it works. But we cant get it here in the UK. I do know of people from other forums, that take it and some find it is good, some dont. For you, it might not be working if you are still getting withdrawals from the Mirapex. Unfortunately until those withdrawals stop, i doubt anything you try would work. Apart from taking a opiate which would work for your RLS, until your RLS is back to baseline. As you are in the States, i am guessing you have a problem getting any opiate from your doctor.
Yes, my dr. does not offer any pain meds or sleeping pills. I do take clonazepam which can help with sleep, but it's not stopping the RLS from creeping in. I agree, unfortunately, that right now it is still the withdrawal from the Mirapex. I am just so hoping the Horizant eventually does work. I';ve read mixed reviews. Thanks for your input!
DAWS is everywhere, but we have never named it on this site, but good to have it but lots of people have trouble getting off of dopamine. In the webinar I attended Dr. Buchfuher said that now he believes, NOW, the way to get off of them is not to wean off, and this is new for him. "Like tearing off a bandaid, instead of taking it off slowly" he says. He is one of the most respected RLS experts internationally. The way lots of doctors do this now to deal with DAWS, he uses opiates to get the people thru the withdrawal issues. (short term in the beginning of it) That is how I got off of requip, just stopped it and and kept on with my pain meds that I was already taking, and that is what I treat my RLS with now, as do many you have RLS "from the neck down". Mojave, Full body RLS is not ALWAYS the result of augmentation. I have it in my back first, then it travels to my hip down my left leg, and then if it is really persistent, it will travel to my arms. I am not experiencing augmentation in any way. It can be an awful thing to get off those meds, and yes, I am not a fan of dopamine drugs, but they do help people, and should be used at the very lowest dose possible. The ergot derived dopamine drugs were taken off the market in the US (Permax) found to cause permanent damage to heart valves. Pramipexole (Mirapex) , Ropinerole (Requip) are both NOT ergot derived, but they can cause damage also at high doses if taken over a long period of time. Those studies are slooooowly coming out finally. As we always say, lots more work to be done.
I have donee the detocs routine several times but I do find it has become more difficult with age. I am now aged 88years I still wonder if l can be. Helped in any way 20years ago I could detocs and gradualliy buidup temedication andtheeffectdwoould last about one year before having to detocs againiFlagged
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