Thank you Everyone who has helped me so much this week!

I am so grateful for all the help I've received from this website in just the one week I've been on it. I have an private appointment for a meds reveive (all my meds) and with my pharmacist this afternoon. She along with my GP are going to help me titrate down from the 12 Mgs. of Ropinerole ER that I have been on for less than a year. I hope it won't be too bad, since it hasn't been that long. I intend to get to a reasonable level of 2 to 3 mgs. I have been taking the iron bisglycinate for this last week too, what a difference! Thank you Nightdancer and Oolong. Haven't had even one episode of the RLS full body or anything this week since I began taking that.

I would recommend that ChristineRichards go back and read my posts and the great advide I got, especially from Nighdancer, Oolong, Pippin, and Elise and all the others who responded with wonderful information. I suspect some of what is going on for you may fall somewhere in with what I was saying. Everyone is right, alcohol is not good. It is a direct trigger.

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  • Hi Bganim1947

    Thank you for taking the time to post your positive comments. :) I wish you well, take it slowly and do let us know how you go on.

    You know where to find us all.

  • Hi Kaarina, starting the process, especially with intention as of today, is not action yet. I do plan to stay connected daily as I expect I will need support, but also hope whatever I do might help others. Plus, I am researching RLS to eventually bring awareness to the medical profession and others. As I said when I started on this site, nothing I read of info shared with me will ever be used without the written permission of those who who gave it to me, and no identifying info will ever be used.

    I'll be here to share as well in anyway that I can.

    Barbara Ganim, if anyone wants to know who I am feel free to check out my books on Amazon, Quest Books, and Echo Point Books

  • Thank you for your intention to bring awareness to this condition. However people are suffering right now so once again I am asking the Administrators to contact Johns Hopkins and let them know that a large percentage of people who take ferrous bisglycinate get IMMEDIATE and near COMPLETE relief. They're infusing people with 1000mg of iron in one shot. Might they be using a hammer to kill an ant? Maybe someone should enlighten them that one 25mg capsule of bioavailable iron is what people with primary RLS need (not people with RLS due to kidney failure and the like).

  • Oolong, the Admins here from the RLS UK are well aware, and I told you the RLS doctors at Johns Hopkins are studying it, so they ARE aware. :)

  • Also, are studying long term use for iron infusions.

  • jonjo I have restless legs , I am short of iron. Unfortunately if I take more iron it affects my bowel habits and throws me into the runs. Anyone any ideas please.

  • Wow, usually iron constipates us, but as we know everyone has different side effects, and different experiences.

  • Good to hear that you are getting the help you need. The iron is a good start, long may it continue.

  • Oh Barbara I am thrilled for you. Not sure what other meds you are on but if you're like most you're taking at least one drug (ie Statins) that is contributing to your RLS. Not to be too positive here, but I think now that you are taking ferrous bisglycinate nightly you will have no trouble tapering off the Ropinerole, and I truly believe you will find that you do not need even 1 or 2 milligrams of it. Your RLS was quiet before the Ropinerole and it will be quiet again. Your journey has provided much knowledge to all of us.

  • Why do you assume that most people are on statins? Out of all my RLSer's there are not many on statins, or not as many as you think. :)

  • Bganim i am pleased that you are taking positive steps towards getting off the Dopamine med and the iron is helping you too.I did ask you elsewhere but you may have missed it but i am correct in thinking i read somewhere that you dont have RLS sensations in your legs? If the answer is no can i ask have you EVER has symptoms in your legs? X

  • Hi all,

    I do get in my legs, mostly starts with right side, but when a full blown episode begins it starts in my feet, moves up my legs and into torso, out my arms. It's like waves of low-dose electricical energy that come in 15-second intervals. I did meet with my pharmacist today. She recommended that I continue with the Ferrous BisGlycinate 28mgs. daily, with my GP's oversite, to slowly reduce my ropinirole 12 mg. ER by no more than 2mgs ER to start and stay with that for at least 3 days to a week or two -- depending on my body's reaction. Then go down 2 more mgs. for another week, etc. until I get down to 2 mgs. She also thought if I was having a problem reducing the Ropinerole I could supplement it with Lyrica.

    Regarding the statin, I am and have been on Lipator for a number of years. It seems that there is some discrepancy between those of you who feel that there is validity to the idea that statins can contribute to RLS.

    The pharmacist also recommended that I take the bisglycinate dose with orange juice as it helps with absorption.

    To all a good night, we can hope,

    Barbara

  • Studies have shown that statins raise serotonin levels. A statin by the name of Simvastin is known to especially cross the blood brain barrier. And some researchers are looking at statins for their anti-depressant properties. Substances that elevate serotonin (serotonin tends to compete with dopamine) are well known to worsen or trigger RLS because they are literally dopamine Antagonists. RLS sufferers (at least at night) need dopamine Agonists. So maybe try taking the statin in the morning?

    Barbara I have a theory - dopamine agonists like the one you're taking will down-regulate our dopamine receptors. So can we up-regulate our receptors by taking short-lived dopamine Antagonists by day? Hunger, supposedly, is a dopamine Antagonist. Scientists watched the dopamine receptors of calorie-restricted mice grow bigger and more numerous. So theoretically substances like statins and anti-depressants might actually have a beneficial affect. But not if those substances or that serotonin is still antagonizing your receptors by night.

  • in other words to shorten that up, eating makes us happy, therefore raising dopamine naturally. I take Simvastatin ( correct spelling) and it does not elevate my RLS at all. Been on it for 2 years, so long enough to know there is no difference in ME with or without statins. That is for me. ;) And dopamine meds never worked for me, or made me soooo sick I could not take a couple of them.

  • Melatonin is also a dopamine antagonist. And studies have shown that melatonin increases our dopamine receptors binding affinity. At least in rat brains melatonin did not seem to increase number or density of the receptors. But hey we need improved binding affinity as well. Melatonin gave me crazy restless body. Just 1mg. But the bisglycinate would stop it. The best treatment was stopping the melatonin.

  • Melatonin made me nuts, and I was taking that iron that you love so much at the time, and it did not take care of it. You cannot definitively say constantly that this will work for everyone, as you do. WE know everyone has different issues and there is no one thing that works for all, and frankly, this is tiring. You can tell us what works for you, or what other things you have read and so on. That does not mean that it will work for everyone. Dopamine withdrawal is comparable to withdrawal from cocaine, when the doses are massively high, and even not so high in some cases. This is confirmed by both the UK foundation, the RLS/US Foundation, and many experts in the field. And, for whoever is reading this, always consult your doctor before starting ANY supplement or over the counter meds, etc.

  • Dr. B disagrees with u. See my latest post. After iron infusions people throw away the DAs - no tapering, no withdrawal, no RLS. I do wish u would get your facts straight. His word is the only word on RLS.

  • I have discussed this with him and attended his webinar on this. There are different ways to get off the dopamine meds. But, one thing has been left out here. He DOES believe with some patients, that they just need to "rip off the band aid" (his words) but he will replace the dopamine with medication that will help with the withdrawals. This all depends on what dose you are getting off of. :) Again, thanks for posting.

  • I too had flare ups of my RLS full body episodes whenever I took Melatonin. Just having RLS, at least for me, made sleep difficult even on the good nights, just because of the anticipation that the sensation might happen. For a while, I took Melatonin to help me sleep. More often than not, after taking the Melatonin for a few weeks, I would have more restful sleep until I didn't. I didn't understand why my RLS symptoms were coming on with greater severity and frequency. Then, of course, my neurologist would respond to my concern that the symptoms were increasing in frequency and intensity by upping my dose of Ropinerole. Thus the cycle began--I was okay until I wasn't. Started reading Web-MD asking what OTC or prescribed meds trigger RLS? Bingo, Melatonin!

  • Reading your post re serotonin just made me wonder if taking Prozac (fluoxetine) for YEARS, though off of it now) has contributed to my rls. Anyway, if so, the damage is done. I remember when it first came out. It was touted as such a miracle drug for depression and it did help for a long time. Got off of it for cardiac reasons. Any feedback is welcome. Can't change the past but I do like to know the 'whys' of things.

  • 2mg every 3days or even every week or two is a big drop.Most find dropping just half a mg every 2 weeks is difficult enough so try not to rush it,good luck x

  • I agree, cannot rush it, and what Pippin says is what the experts say. Weaning off Requip is not an easy thing to do, so stay strong. :)

  • That's because they weren't taking a bio available form of iron while tapering down.

  • Time will tell.

  • yes, time will tell, I refuse to waste my time on this any more. That is a sweeping and not so true statement is what I am saying, Oolong (terraverde, etc how ever many names you have had by now)

  • Yes, Any Vitamin C will help you absorb iron better, ANY iron. Statins is a theory, not a fact as far as talking about statins in the context of meds that can make RLS worse. So, it is all opinion, there are no studies for statins that have to do with RLS. Statins CAN cause leg pain, but it is muscle damage that causes the pain, and it is real pain, not like the electrical current that we feel with RLS. 2 mgs every 3 days is a little fast to reduce Requip, but your body will let you know that. :)

  • The other very important element to take away from your RLS journey is the fact that you were taking ferrous sulfate 2x a day and it seemingly did nothing for your RLS. But I bet your iron stores were nevertheless going up. As I've said on here before your body stores of iron don't correlate very well with RLS. It's more a matter of taking a very bio available form of iron at the right time. Generally that right time will be before bedtime. I have gotten to the point where I only take the bisglycinate when I have it. And I don't have it every night. In a short time you too will not have RLS all of the time. The other thing I have found is that the bisglycinate is good for plain vanilla insomnia. In other words it's a darn good sleeping pill. At least that is my experience. Watching the Weather channel is my other go to sleep remedy. 😌

  • you cannot promise that to anyone.

  • Hi bgamnim1947

    So glad you got help and are on the road to sorting things. I find the night after I reduce my Ropinirole is bad then after a few days settles good luck. I found out last night that my GP sent letter to sleep specialist, I can't take tramadol but my GP has now agreed to give me the codeine I need. Once again good luck this site is amazing for support and knowledge and advice cheers shaft1952

  • To reiterate I wouldn't bet on having withdrawal symptoms. For instance there was a man on here who was taking 2mg of Requip twice a day. He switched out his daytime dose of Requip for the bisglycinate and felt great. Not one second of withdrawal ever. I'm betting the same will be true for you.

  • not from TWELVE mgs like Barbara here. Big difference between 12 and 2 mgs. Everyone has their own experience and the one you describe,. Oolong, is what many people would wish for , and it is just not true for ALL sufferers. I can safely say that is a fact.

  • Thank you Oolong for the support. Since I am on 12 mgs. of Ropinerole ER not 2mgs. twice a day like the fellow you mentioned above, I may be more susceptible to withdrawal, plus I've been on the ER for about a year. But I am absolutely determined to get off it.

    I do think the 28mg bisglycunate is really making a difference. You may be right that it may eventually all I'll need. My pharmacist suggested that when I take it before bed time that I take it w/OJ even though it does have Vitamin C in it. What do you think?

    One important Question: Since I am on 12 mgs Ropinerole ER, pharmacist thought it best to stay with the ER as I titrate down. But Ropinerole ER only comes in 2 mg doses. Thus I can't go down 1 mg. at a time. How do you, Oolong or anyone feel about my reducing 12 mgs ER by 2 mgs ER at a time? That means starting, say next week with 10 mgs ER and staying on that for 2 to 3 weeks along w/ daily 28 mgs of bisglycinate? Then go down another 2mgs ER after that, and so on til I'm down to 2 mgs ER?

    Thoughts about that?

    Barbara

  • It is still too fast, but can't do anything about the 2 mgs, I guess. But, getting off of 12 mgs is and should be a much slower process than what you are being told to do. We do not know each other, but I have been doing this and researching RLS for over 20 years and have been managing groups with over 6,000 people total, and then add in this group of almost 6,000 people. I can tell you from my experience as a group leader, I do not want to ever panic anyone, but I know for a fact that withdrawal from dopamine is likened to withdrawal from cocaine in many instances, and that is more of the norm than the exception. if you send me a private message will give you an email to an RLS expert with a thriving practice in the US, and you can email him, and he will tell you what I am telling you. he has been my mentor for 20 years and one of the first people I ever met online.

  • I'm not a doctor, nor is anyone who is responding to you at the moment. I do know that Ropinerole is neither a sleep aid or an anti-anxiety med. Just the opposite. Ropinerole is well known to cause insomnia while taking it and has stimulating properties. I believe (note the believe) that you are going through a type of withdrawal right now and that the Ropinerole has done nothing for you for a long time but give you worse and worse RLS which you didn't have before starting this drug. Your current withdrawal/augmentation symptoms are very physical I do not sense mood disturbances from your posts. As you taper down they will remain that way and the iron will continue to relieve those very physical symptoms better than any pain reliever. However, if you allow these people to convince you that you will suffer terribly then you just might. People who suddenly stop therapeutic drugs of their own volition that "may" cause withdrawal symptoms such as the SSRIs, ambien, but who didn't know about this possibility do not experience withdrawal symptoms or very mildly so. When asked about it later these people may say "oh yeah, hey, I kind of felt some restlessness." These people are the gold standard for what "true" withdrawal symptoms are. People go through horrendous withdrawal symptoms from placebo :). With the exception of heroin in most cases what people describe as "withdrawal" is merely a return of their original symptoms for which the drug was prescribed. And for some people a return of original symptoms leads to anxiety and mood disturbances. And because we as humans have a tendency towards anxiety (the fight or flight syndrome) then "restlessness" and "anxiety" are ALWAYS listed as a possibility whenever stopping any drug including something as mild as a beta blocker. Last but not least, the list of "side effects" from Requip are more numerous and severe sounding than the "withdrawal" symptoms. So like I said, I think you are going through the worst of it right now. But what does it matter what I say or anyone says? If you listen to your doctor (rather than us) and taper down by 2mg as suggested and find yourself imploding the second you take 10mg instead of 12mg you can always pop that extra 2mg and be right back to where you are now with the sensation of electrical currents running through you. That feeling will end once you're off the Ropinirole. Keep your eyes on the prize and remember that people have had to be hospitalized when withdrawing from placebo. It's people's tendency towards panic that makes "torture" techniques like water boarding so effective. And it's that tendency that makes withdrawal from any substance, including placebo, seem so awful and it's also that tendency that then forces drug companies to put that down as a symptom of withdrawal even from incredibly mild drugs.

    Let's get away from "withdrawal" which is highly variable and negotiable ;) and focus on the real issue which is RLS. RLS is a brain "iron: disorder. I'm not smart enough to make that up - I read it on Johns Hopkins website and many other world renown medical centers. So why shouldn't we be "fixated" (as Elisse puts it) on iron. It works - need I say more. If the iron has stopped the RLS for you while augmenting on Ropinirole why would you think it wouldn't stop the RLS as you slowly taper down?

  • Have you ever done a suicide watch for someone withdrawing, oolong? NO< I am not a doctor, but do have many RLS doctors that I get my information personally from. I have told you before, I studied pharmacology and nursing, and while I am NOT a doctor, do have 20 years of solid experience with RLS groups and what goes on. I am in research mode all the time. But not going to argue with you. I have seen the dopamine withdrawal first hand. Also, you mention Johns Hopkins with a surprising amount of frequency, so I would think you would be familiar with their RLS Care Center and the doctors doing the research there. Look up augmentation on their web site. Studies going on all the time. So, do not tell me that iron is going to take care of DAWS, Dopamine Withdrawal Syndrome. There are always exceptions, but it is a real thing. Look up Dr. Christopher Earley on the Johns Hopkins web site. IF you do that, I do not have to explain further because he will do it for you. I am sorry, but iron is not the answer to everything.

  • DELETED due to being offensive

    Kaarina (volunteer)

  • Look up Dr. Christopher Earley's video and webinar on Johns Hopkins web site , since that seems to your favorite and look for the augmentation webinar he did for the RLS/US Foundation.

  • More about augmentation and listen to the man who's doctor tells him you will go through 34 days of hell while coming of his dopamine med. We take augmentation and the withdrawals. seriously, and sugar coating it, will not help those who have to go through it. We help, advise and support those on here who are are augmenting and are asking what they need to do. Some people have no idea they have augmentation til they join us in the forum and find out.

  • This one is even better. Thank you! xxxx

  • No way. I'm not even taking DA's and that video scares me. Plus I know it will only aggravate the living crap out of me. You give someone with lousy dopamine receptors a drug that further down-regulates their receptors and u act surprised when their RLS augments??I think DAWS is way to intimidatingand medical a term. Why don't we just call a spade, a spade? What Barbara has and likely people on opiates is not just lousy dopamine receptors but really lousy dopamine receptors. And yes of course if u take away the one substance that was beating that last drop of dopamine out of those receptors then some people will experience all the symptoms that go along with insufficient dopamine in the central nervous system. Let's take another example. Say a patient has low body stores of iron and complains to Doctor of fatigue. Doctor prescribes a stimulant and all is well. Only that stimulant lowers your iron stores even further. Now I have full blown anemia. The doctor takes me off stimulant slowly but in addition to fatigue I now also have dizziness, heart palpitationsdepression alternating with anxiety etc. The doctor who gave me the stimulant apologizes and tells me I have SWS. Stimulant withdrawal syndrome and shows me a nice little video. You know what I'm saying to that Doctor "you idiot treat my drug induced fricken anemia and save the acronyms for your more gullible patients" Then I would storm out of his office and do my own research. Low and behold I discover a whole bunch of people getting relief from iron. I buy the best iron I can and start feeling better quick and within a week all of my symptoms have resolved and I feel better than ever. You may think that this is a bad comparisonbut actually it's a perfect comparisonWe with primary RLS have anemic brains. Our brains aren't screaming out for agonists or stimulants or pain killers when we have RLS symptoms, they're screaming out for a little bit of extra iron (in the bloodstream) day in day out. When u don't have symptoms u don't take iron. Somewhereout there is a happy video with Dr. B discussing iron infusions. He witnessed numerous people receive infusions then go home and throw away the DAs. No withdrawal, no RLS. Duh! I see no reason to go for infusions as long as we have over the counter bio available iron. Well Barbara, don't get scared, get angry. Your doctor down-regulated your dopamine receptors. You now need to feed those receptors and you know their favorite food.

  • Good job, Elisse! :) This is one of the premiere researchers in RLS LAND, and he is the one who started the Quality Care Center at Johns Hopkins in the US. He is on my top 5 list of RLS doctors who knows his stuff.

  • AS USUAL, always check with your doctor. Experience counts.

  • Sorry but oolong you have no idea about augmentation or the withdrawals, that people go through. It hell for most people when weaning off any high dose of a dopamine med and its not to be trivialised.

  • So is placebo withdrawal, look it up. You don't need drugs or the withdrawal of drugs to go through hell. Ever heard of panic attacks? And the sweating, heart palpitations, nausea, dizziness, dry mouth, insomnia +++ that comes with them? All the same side effects as withdrawal from the worst drugs out there yet every single one of those symptoms are created by the person's mind. But you and Nightdancer keep telling people on here how bad it is and you will make it come true. Most people who went on DAs were in a bad place (hell?) to begin with as far as their RLS symptoms and lack of sleep are concerned. Stopping the DAs (without iron) brings all those symptoms back. Now no one likes that. So is a return to hell withdrawal or simply a return to hell? That's why I tell people that they have to take iron while tapering down. So that not even their original symptoms of hell return :)

  • Rude,!!!! As i keep saying you have NO idea. Do you think its just US saying how bad the withdrawals can be. NO, any RLS expert will say the same. !

  • Look up beta blocker withdrawal right here on Healthunlocked. Look up coffee withdrawal. Sorry but in terms of drugs that result in severe withdrawal symptoms Requip doesn't even make it into the ball park. You're confusing a return of RLS symptoms with separate and severe symptoms caused by the withdrawal of the drug itself. Alcoholics, heroin addicts, have severe withdrawal symptoms that pertain directly to the withdrawal of the abused substance and require in-patient care. So no you obviously don't know how bad RLS itself can be. A return to RLS hell is a return to RLS hell it is not "severe" withdrawal symptoms due to the removal of the drug itself. I don't believe Requip is even listed as a controlled substance.

  • I have NEVER said "Do not take iron". Give it a break. Do you even know how augmentation starts? Until you do, then this conversation is over. We talk about Ferritin levels EVERY day in every group. We encourage people to get their ferritin level checked all the time. So, it you think we talk about augmentation all the time, you are mistaken. We cover all aspects of RLS, Primary RLS, Secondary RLS, RLS and PLMD in kids and so on. Augmentation is only discussed when appropriate. I saw DR. B's video, of course. He recommends that methadone be used for to lessen the withdrawal issues. He also did an excellent webinar on augmentation. Our bodies get used to any meds we take, it adjusts. It is when the dose gets too high that augmentation occurs. It is not the patient's fault, they think they are being helped by being told to increase their doses. And, it turns into a merry go round. We cover all kinds of things in our RLS family. So, do not presume what you do not know, is all I am asking. have a good night.

  • Hey lady you advise people to take opiates like it's going out of style. My advice to give HRT a rest to see if it lessens RLS is a totally benign suggestion. You r up to your usual trick of instigating arguments. You have placed more than a dozen posts to me in the last couple of days and I did not respond to any of the dozens until today. Can't u take a hint. I do no respect you or your advice and I have ignored u. But u just keep pounding. Barbara is better much better thanks to my advice and of course the iron. And you conveniently ignored the fact that Dr. B has numerous patients that throw away the DAs after iron fusion. In a recent article Dr. B. Talks about how iron will allay augmentation.If you knew one tenth of what I do about RLS your head would explode.

  • Well that is rude. This is NOT a contest, and I will not engage. I know DR. B very well. Dr. B uses many methods to get his patients off the dopamine meds. My head my explode, but not because of you. Sorry. I do not know what article you are referring to but this one in Sleep Review magazine is from 12 months ago. "Allaying Augmentation"

    sleepreviewmag.com/2015/02/...

    in this article he explains how dopamine agonists cause augmentation, how he does use iron at times, opiates at times, his preferred pain med to use is methadone. So, if you have something more recent, wold like to know. He is supposed to be publishing an algorithm for treating augmentation from dopamine meds, and this is an excellent article. Happy Reading! Oh found the other one I was looking for.

    sleepmagreview.com/2016/02/...

    Nowhere in these 2 articles or in Dr. B's book "Clinical Management of RLS" the 1st and 2nd editions, plus other papers and other books, does he say throw the dopamine meds away after "iron infusions" which I thought you did not approve of. But that is neither here nor there, this is what Dr. B says, "Every patient must be treated on an individual basis, and taken case by case". He even says that he uses low dose opiates for SOME patients in pregnancy, so when I am giving those facts, they are from him. His webinar on Augmentation- he says he prefers to use a low dose opiate such as methadone for the withdrawal period for the dopamine meds. I attended and spoke at length with him. You can say what you want about me, but I use his material more than any other RLS doctor, so do not put words in his mouth. he has zero issues with MY med list, so just sayin...............He is not afraid and prefers in many cases to use opiates. Cheers! You do not have to believe me, read his words. If you do not have his book I mentioned above, everyone should get this one. The treatment algorithms are golden and are my main reference. BUT, to refer to one thing you said, Oolong, this is the FIRST time I have mentioned opiates today, so do not put words in my mouth either , please. If you choose to believe that I do not know 1/10th of what you do about RLS, then go ahead. Like I said this is not a contest, but I DO believe in quoting doctors and experts correctly. And, all the advice that I hand out , and for the last 20 yrs, 80% of it comes directly from Dr. Mark Buchfuhrer. I expect him to be treated with respect.

  • I didn't make a single bad comment about Dr. B. You're trying so hard to make me look bad. Please quote any all derogatory comments about Dr. B. That I have made.

  • I have ASKED you to PM me. per group rules. he never says that iron can be taken ALONE, to help with DAWS. See the article I posted above.

  • No need for thanks just hope you are continuing to do well!!!!

  • Listen to Nightdancer, out of everyone she has the most knowledge on RLS. Oolong has no knowledge that i know of on augmentation or how to deal with it. they only have a fixation on taking iron.

  • Thank you Elisse. I do appreciate information, response, and support and Nightdancer as well, as I go through these uncharted waters.

  • Now here you are Bganim with ZERO symptoms with the start of the bisglycinate. You go girl!

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