Please help tonight is only my first night of my Dr taking me off ropinerol and I'm going mad, are there any tips please to help and how long with the withdrawal symptoms go on for?
Ropinerol cold turkey: Please help... - Restless Legs Syn...
Ropinerol cold turkey
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apbnab
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Hi apbnab.
What dose of ropinirole were you on? Are you in the UK? It is really difficult to withdraw from ropinirole without help. The dose should be reduced very slowly, over months or weeks and your GP should give you something like tramadol or an opioid to help during the withdrawal period.
I went through it over a 3 month period last year with the help of the kind people on here and if I hadn't found about about tramadol to help, I doubt I would have been able to do it.
Dr Mark Buchfuhrer at the Southern California RLS (rlshelp.org) keeps a list of all the questions and answers people have asked him and if you use the search engine on that site, you will find a number of questions similar to yours.
It took me 3 weeks from taking the last dose of ropinirole to get over the worst of the withdrawal and I was on tramadol every 4 hours for the most intense part. Some people have an easier time- I think it depends on how many years you've been on ropinirole and the dose.
There is light at the end of the tunnel and when you are off the ropinirole, there are other options to control the RLS. Some people manage on tramadol, others on codeine and others on gabapentin. For some lucky people, diet and vitamins or iron bisglycinate help but everyone is different and you need to find what works for you.
I am thinking of you,
Take care,
Jools
Hi and thanks for your reply, I was on 4 tablets a day ( not sure if the amount) and had been on them for about 5 years, the Dr didn't offer me anything else to take. He has also taken me off my veneflaxine ( anti depressants) but at a reduced dose going from 225ng 150mg 75mg and then nothing over 6 weeks. This is all because these were caused elevated liver blood results
You say codine can help, as in the tablet form, if do how much and how often.
I am in the UK x
I would imagine the tablets were .5 mg so probably you were on 2mg for 5 years. You should go back to your GP and ask for help reducing the dose slowly. 1 tablet every 2 weeks and your GP should give you tramadol or codeine or oxycodone during the withdrawal. I'm not sure how much codeine, your GP should advise on that.
The veneflexine is one of the drugs that actually makes RLS worse, but there are other anti depressants that are alright, like ambien.
It seems that your GP has just left you in a very difficult position and you should go back as soon as possible armed with as much info from this site and the California website as you can print off and ask for help coming off ropinirole properly ( slowly) and with back up meds to see you through the most difficult weeks.
Jools
I am so grateful you replayed Jools, have you heard of ropinirole causing liver problems?
Liver damage from Ropinerole is rare and selflimiting. Although it is metabolised within the liver it has not been known to be a major factor in damage to that organ.
No worries regarding that particular drug.
Good luck.
Bloody GPs are hopeless, I can just about cope with coming off my veneflaxine but not ropinirole as well 
abien is a sleeping pill; bot an antidepressant as far as I know.
wellbrtrin is a safe antidepressant to take with rls.
Grammie Wellbutrin is not available in the UK x
My main point with Joolsg comment was that ambien is not an antidepressant; it is a sleeping pill.
I thought someone said it could be prescribed off label. I could be wrong about that.
wellbutrin is an antidepressant that does not have an impact on rls. no offense to Joolsg but I am pretty sure ambien isn't an antipressant, but is a sleeping medication.
We have people from a lot of countries here, and Wellbutrin is not available in the UK. But, Trazadone and Mirtazapine are, and they will not affect RLS in a negative way like the SSRI's or tricyclic's will. apbnab, Are you saying that the doctor took you off both meds at once, though?! You need to call him, and say that going cold turkey off of a dopamine med after taking it for 2 years, is huge problem, unless you have a backup med, and that backup med is usually an opiate (per Dr. Buchfuhrer and the docs at Johns Hopkins, and the ones on the Medical Advisory Board for the RLS foundations, etc)
Have a look at page 115 of patient letters on Dr Buchfuhrer's site and you will see specific advice on how long withdrawal will take ( 10-14 days) and dose of tramadol to take while going through withdrawal ( 100mg every 4- 6 hours) but you must inform your GP and get his/her help to get through this time, bearing in mind most GPs in UK are not very knowledgeable about RLS or problems getting off dopamine agonists like ropinirole.
Jools
Its certainty given me food for thought, I will be ringing my sleep specialist at Papworth Hospital this morning as he was the one who put me on these tablets.
• in reply toapbnab
Yes, I agree Apnab the ferrous bisglycinate is a must if u want to avoid withdrawal symptoms.
nightdancer• in reply to
Why do we have to keep telling you that iron bisglycinate does not help very many people going thru Dopamine withdrawal? Dopamine withdrawal, especially COLD TURKEY is compared to cocaine withdrawal. And, that is the RLS researchers and experts, even from your favorite site to send links from, Johns Hopkins. When the doctors who run the RLS Quality Care Center there and the clinical, official trials say it is like withdrawing from cocaine, they are NOT kidding, and not one, I can assure you will say ANY iron will completely make those horrid symptoms go away, tredlight. I WAS going to totally ignore you this 8th time around you have going with your 8th or 9th screen name, but this is a bit too much. Involuntary Dancer sounds VERY well informed, so it would behoove you to at least listen to other people's side of it. I can keep typing as long as you can, and your "extreme enthusiasm" is a bit overwhelming for new members begging for help. Again, I do not disagree that iron should be tried, but one must get the blood test for ferritin, and talk to one's doctor first BEFORE starting anything like that. Just because something is "all natural" does not mean it is all SAFE for everyone. Iron overload is a dangerous thing, and if someone foes out and buys iron because YOU say so and do not check with their doctors first, then you are bordering on giving out irresponsible information. And, it never changes. Your way is not the RIGHT way for everyone, and I have no idea WHY you cannot accept this concept. I listen to everyone here and in my own groups, and we always have to think responsibly before we post, or we are doing a disservice to the new people wanting information and help. You make it sound like the iron is going to solve all withdrawal problems from the dopamine meds, and that is just not realistic or true in the real RLS world. Iron can HELP, but can assure you that it is not going to do a d*mn thing to completely get someone thru DAWS.
Dear apbnab,
I think I can help you.
The most important thing thing you can do that will likely help to give you immediate relief is to go to your local pharmacy ASAP and purchase an OTC (Over the Counter) bottle of Ferrous Bisglycinate or Gentle Iron. Take one 28 mg or 25 mg. tablet (whatever way it comes) with a glass of orange juice—you must take it with OJ otherwise it will not be absorbed into your body correctly. It will make you a little drowsy, so it's best to take it night. If you've been on some other kind of iron supplement, stop taking it. Then you can begin cutting back slowly or titrating off your Ropinerole. Stop going cold turkey!
I have been slowly titrating off 12 mg Ropinerole Extended Release for the last month. I was desperate to do something about my RLS full body experience—most nights were becoming a nightmare. The Ropinerole wasn't helping. Luckily I found this site, and with the help of the wonderful and knowledgeable people here, I realized I was experiencing augmentation several times a week. My neurologist's response was to increase my dosage of Ropinirole, which was the worst thing I could do, as it made the augmentation worse.
When I found this site, the first person who responded to me recommended the Ferrous Bysglycinate. I went out and bought it that night. I swear it has been the reason for turning my RLS experience around and saving my sanity. Since that first dose, I haven't had any augmentation or any kind. I fired my neurologist, and began working with my pharmacist, after a private consultation, to determine how to titrate or reduce my dosage of Ropinerole. Then I worked in conjunction with my GP to reduce my dosage by 2 mg one month at a time, as suggested by the people on this site. They all said it's vital to titrate slowly—a minimum of one month to a lower dose before going to another lower dose.
I started a month ago with the first reduction of Ropinerole ER by 2 mg, plus (1) 28 mg capsule of iron before bed with orange juice—best on an empty stomach to further maximize absorption. I also avoided alcohol for the first two weeks until I was sure I wasn't going to have another augmentation or flareup experience. I don't drink much, but I discovered that even one glass of wine with the dinner could trigger an RLS episode. I also minimized my caffeine, just 2 cups of coffee in the morning, and no chocolate. Yesterday I saw my GP after successfully completing the first lower dose of 2 mg for one month. I haven't felt this great in years.
I believe that over the next several months I can keep reducing my Ropinerole until I get off of it completely. I have not needed an opioid during my titration so far, although my doctor did give me a script for Vicodin. I do take low doses of Tramadol and Gabapentin for knee and ankle pain caused by a failed operation. But I haven't had to increase it during my titration experience.
I think if you can follow this formula of reducing your Ropinerole by the smallest amount possible for at least a month, and then another reduction until you get down to the lowest possible dose, combined with a daily dose of Ferrous Bisglycinate, you may be okay. But please stop going cold turkey. You don't even need to go to a doctor to do this titration. My GP said to me yesterday that I could have done this on my own without her help, because the guidance from the people on this site have been spot on.
You really do need to find another doctor, preferably someone who has had experience with restless legs syndrome. The best place to get good recommendations for a neurologist or GP with RLS experience is a sleep clinic. No responsible doctor should ever suggest a patient go cold turkey with any medication they have been taking for along time. This worries me so much to think doctors out there are either increasing their patients' RLS medication without knowledge of augmentation, or telling them to go cold turkey—as you discovered, that's insane!
Good luck, I hope this helps.
Barbara
Wow, I have today left a message with my consultant at Papworth Sleep Clinic who after a sleep study put me on the ropinirole, until I hear from him I will continue to take the ropinirole I have left, I also left a message with the GP who took me off these yesterday asking to put them back on repeat for me. I can't imagine what state I would get myself into coming off both of these at once. Interesting to know there is a safe antidepressants that if need be I can take.
Thank you all so so much for your replys, I am beyond grateful
Hi apbnab , Tramadol has helped me since I started coming off Ropinerol. I am about to try the Iron Bisglycinate the others have mentioned . Got it from Amazon . I am waiting to see one of the consultants at either Papworth or Addenbrooks. Who are you under and is it for your RLS or another sleep problem?
I am under Dr Nick Oscroft at Papworth for both sleep apenea and RLS both found during my sleep study
Are you happy with him and do you think him up to date with the lastest RLS treatments etc?
Barbara, you are using the iron, and there is nothing wrong with that, as long as it is ok with your doctor. I also believe, and you and I have discussed this, that the other meds, as in pain meds, are also helping you. I am glad you are doing so well, and if you think the iron is also helping, that is great. keep up the good work! you are soooooo right when you say cold turkey off of many meds is INSANE, especially the dopamine meds. Also, you have said you did/do not need to take an opiate to help with DAWS. Tramadol is a synthetic opiate, so technically you are using an opiate, which would REALLY help with the DAWS. just trying to keep things straight.
Bganim have been following your Dopamine Agonists withdrawal using the iron supplement butI hadn't been aware until I read this comment that you are also taking Tramadol and Gabapentin.
Bganim/Barbara, you said on another post you are also taking tramadol and gabapentin, which would also be helping with any withdrawals.
• in reply toBganim1947
Look at you girl, feeling better than you ever have in your life. Don't let the wolves rain on your parade. Xx
sleepreviewmag.com/2015/02/... check out this link, I know you didn't come off ropinerol because of augmentation but it lists alternatives to ropinerol and similar drugs.
!st off, why is he taking you off the med? Do you have augmentation with the old med? Did your doctor not give you a replacement med ? What an ass if he hasn't.! The SOB should be shot. Your doctor obviously does not understand the pain that he is putting you through. I had to get off of Ropinirole because of augmentation. But I had another med to replace the old one. With my second med the process was smooth. I think the second med was Pramipexole which I am now slowly trying to cut back but very slowly. Months! Pramipexole is more draconian than Ropinirole but that's a whole nother story. I would go back to my current doctor and ask, demand some help with a transition med .Get that settled first and then go shopping for a more compassionate and better suited doctor.Look for a top notched specialized sleep doctor at a university med school. Usually they are neurologist that specializes in sleep. Not all doctors are equal. Do some reasearch on your next doctor but go back and get some help and then move on.
Good luck.
This is my normal GP who has taken me off it as he says it caused me liver damage (and another medication he has also taken me off) Nothing else was mentioned, I have left a message with my Sleep Dr who put me on the tablets, hopefully I will get to speak to him today
Ropinerole and pramipexole are the same class of med, and pramipexole is a stronger version of a dopamine med. So, to take one to get off the other is an odd way of doing it. To take a dopamine med to help you get off another one that can cause the same problems is not the usual way to do it. But, you are right, we have to research, advocate for ourselves for adequate treatment. We cannot just go into the doctor's office "blind" and then find out after the visit , the doc may not have done right by you. need to go in in armed with information.. it is the only way to survive. DO go to Dr. B's web site, also the RLS UK Foundation web site and/or FB page. There is a lot of help for RLS on FB these days, many many groups. Some are better than others, but discussing things in real time has it's advantages.
I have found that, as I said before, not all doctors are equal. Some of the sleep doctor's I have used in the past here in Atlanta have taken over the sleep practice to semi retire. These doctors are not as dedicated as the serious docs. I have currently found a very good & dedicated doctor at Emory because he has RLS himself. He understands the effects. I am now attempting to cut back on my Pramipexole but it is a very difficult med just to wean yourself off of. IT is very addictive after you have taken it for a while.
Dr Buchfuhrer is one of the leading experts in rls. The article Mantel refers to is a good starting point. Unfortunately even many sleep consultants are not particularly knowledgeable about rls and it is essential to be as fully informed as possible yourself when interacting with the medical community.
It is possible to come off ropinerole and other dopamine agonist medications without any back up meds but you will experience two or three weeks that truly merit the description 'torture'. If I had taken the time to properly inform myself at the time when my sleep consultant discontinued my mirapexin (a dopamine agonist in the same category as ropinerole), I would have known to insist on being prescribed oxycontin or a comparably strong opiate. I know that many on this site have used tramadol during this period also.
I tried taking ferrous bisglycinate at night time as suggested but it was not effective in dealing with the symptoms when I was withdrawing from Mirapexin. It is well worth taking even if it does not knock your symptoms on the head then and there however as it will increase your serum ferritin levels over time. For me bringing up my serum ferritin levels has resulted in much improved symptoms.
• in reply toinvoluntarydancer
Hi Dancer, I'm the passionate one but then not really. I'm passionate about the gut micro biome. I put iron in the same category as air and water - meaning necessary to sustain life. And of course we with RLS have anemic brains. By day when there is somewhat more unbound iron in our blood we don't get symptoms of RLS. At night as that iron level drops we get symptoms. And then we have no brain iron reserves so our lousy dooamine transport system comes to a kind of grinding halt without that iron that is so vital.
Back to you. Since you went cold turkey with the DA I would have loved for the bisglycinate to have gotten rid of all of your symptoms but would not expect it. We with RLS have small dopamine receptors to begin with and then after 10 years of being on a DA yours became minuscule. Plus if you were also taking iron by day then very little of that night time dose will be absorbed and thus unable to provide u with max relief. Now you're off the DA and I'm sure your receptors are bouncing back nicely. As long as u r taking the iron I would try to take ONLY at night. I would wait until the RLS kicks in and then let the iron be the first med u take. Wait one hour and then if u still have RLS take other meds.
Are you taking any other meds besides the RLS ones? If you are taking antidepressants for example then no the iron will not give immediate relief. Plus do you have any other conditions? I don't know what it is about allergies but that is one condition that seems to mitigate that immediate relief from iron. And just about any auto- immune disease including diabetes seems to blunt the iron. Glad you're better.
The most important thing I want to mention is that I truly believe that for people who taper off the DAs and take the bisglycinate the experience will be a blip at most, not torture, not a nightmare. But if we drill it into their heads that they will suffer then they just might.
Grammieof4• in reply to
Speaking of iron...I met with Dr. Christopher Early at John Hopkins. He is a leading specialist for RLS. Had bloodwork for iron absorption, etc. mine is "relatively " low for a person with RLS. I am scheduled for an iron infusion. He said it could last and help for 6-8 months . It also bypasses your stomach so no constipation or other issues.
Is this in the UK?
No. John Hopkins Hospital in Baltimore, Maryland USA
Johns Hopkins has an awesome RLS Quality Care Center, run by 2 of the most prominent RLS doctors and researchers in the US. They are the ones doing the loooong iron study and the loooooong opiate study, 18 months. The latter is to prove that augmentation does not happen on opiates and also the fact that that is the preferred class of meds to help with dopamine withdrawal.
I know!!! So glad I was able to see him. It took me 5 months to get an appointment.
Worth the wait, I am sure.
I have had the iron infusions. Am well acquainted with Johns Hopkins and what work they are doing now at the RLS center there. That is Dr. Earley , and he is doing studies on iron, on opiates and the long term use of them in treating RLS, thank goodness! And, they are proper studies, each were lengthened to 18 months which is unheard of these days. Most clinical trials are 12 weeks long, and those are fairly useless. Good luck with your infusion and let us know. I know many people who have had them, for me they did not work, but for some they can be great! 
I am literally praying on my hands and knees that it will help me. Right how he has me on 600 mg gabapentin
@ 6-7 pm and then 300 mg more at 10:30 (if I'm going to bed at 11:00.) It has helped a lot but he said the iron infusion could possibly eliminate the use of the meds.
"possibly" being the key word. I hope it does help you. let us know, but just know that it is very few people helped with iron infusions, as in "completely eliminating meds". The infusions will being up your ferritin level, and then a few months or weeks later, they do not last. Most insurance will only pay for 3 infusions per a 12 month period. There ARE studies going at Johns Hopkins to see what extended #'s of infusions do for RLSer's, the latest being an 18 month study, as well as an 18 month study on the use of opiates in RLS.
I will certainly key you know!
apbnab• in reply to
Interesting, I am a type one diabetic and am on venoflaxine 225mg but am being weened off that, now on 150mg. I have learnt so much since being on this site x
involuntarydancer• in reply to
Hi Tredlight, I really am very glad that the ferrous bisglycinate works in the way it does for you and apparently for others, although I note that many who recommend it are also still taking at least some dopamine agonist and it may be that it will not be so effective as they move towards total elimination of the da. I see, also, that you are generous and enthusiastic in your efforts to help others, as are many who take the time to post on this board.
I wonder if, however, in your natural enthusiasm for a treatment that works for you, you may be allowing yourself to oversimplify a condition that has defied the understanding of eminent medical experts who have devoted their life's work to it. It also comes across that you make assumptions, in what might be perceived as a slightly dismissive manner, about the experiences of others who suffer, in some cases, cruelly and over long periods.
I did not go cold turkey when I eliminated pramipexole; I cut down little by little in the approved manner. I had cut my dose by nearly two thirds (over a period of several weeks) before I started getting symptoms and then they kicked in very badly. I would get maybe two hours sleep every 4 or 5 days. Unfortunately for me this continued for a period in excess of 10 weeks until I was prescribed Oxycontin. In the course of that 10 week period, I tried on a number to take ferrous bisglycinate exactly as you suggest here and without taking any other iron in the daytime but it had absolutely no impact on my symptoms at the time. Ferrous bisglycinate simply did not have the power to transform my experience into a 'blip'.
I understand the importance of positive thinking, as well as the limitations of it. I am by no means alone in considering that coming off dopamine agonists after augmentation is a truly appalling experience. I do not wish to 'drill in' the possibility of suffering to anyone but I wish that I had been better informed as to what to expect before I had gone through it. I feel very angry with my consultant who did not warn me. I would not wish anyone else to wander into that experience without a realistic idea of what to expect. If ferrous bisglycinate can transform this experience into a 'blip' that is wonderful and will surely be a pleasant surprise for one who was expecting much worse. I truly hope that it will be so for many but my own experience alone shows categorically that it cannot be a 'blip' for everyone.
I am relatively fortunate in that I do not suffer from any other chronic medical condition and the only medications I take are specifically to treat my rls. I am well aware of the various trigger medications and substances and am careful to avoid them. I am open to considering every reasonable suggestion for the amelioration of my rls. I keep myself well informed about developments in treatments as well as the various suggestions that emerge from this and other boards. I have a reasonable grasp of the physiological processes concerned. I have already read through your posts and I have a very full understanding of your proposition; you don't need to repeat your theory for my benefit. I understand it but, given my own experiences with ferrous bisglycinate, I do not consider that it represents anything like the whole picture so far as rls treatment is concerned.
All I can say is I totally agree with you, involuntary dancer. We all know different things work for different people, but the tendency of some to dismiss others' stories and experiences is a problem. I manage many groups, and it is no exaggeration when I say, according to the experts, that for many many people dopamine withdrawal syndrome is not a "blip" and it is likened to withdrawal from cocaine. This is not someone's opinion, it is a fact. I do get annoyed when some dismiss my experiences, and I KNOW what I and my team have dealt with over the years, and suicide watches are not that uncommon. We just had one a few days ago. So, while I understand that SOME do get some relief from iron or diet or many other treatments, NO ONE thing works for all of us, and when I have to repeat over and over that one fact, it does get tiresome. Thankfully I, personally, have never had to go thru dopamine withdrawal, but over the last 21 years I have studied, researched and soaked up a lot of information. And, while we LOVE to hear good success stories, some people are, as you say a little overly enthusiastic and yes, a little pushy. This does not mean I do not believe them, but iron alone is NOT going to take care of severe dopamine withdrawal, and that also is a fact. So, thank you for your post, and I love the way you worded it! Cheers!
Involuntarydancer i totally agree with every word! X
• in reply toPippins2
For your mom: ncbi.nlm.nih.gov/pmc/articl...
I've been researching substances that will antagonize and thus up-regulate our dopamine receptors. The most promising and benign substance that I have found after a month or two of research is berberine. It's over the counter at health food stores. I have taken it off and on for viral infections as well as an antifungal. I'm here to talk about it. As of 2016 it sounds like it is promising as a treatment for AD as well.
• in reply to
Lets try putting the ncbi.nlm.nih.gov/pmc/articl...
• in reply to
Third strike and I'm out
ncbi.nlm.nih.gov/pmc/articl...
nightdancer• in reply to
well you got that one. I will make sure Pippin sees the link. My father also had Dementia and Alzheimer's, and Pippin is getting LOTS of help from many sources, interesting though, BUT, this states "may help inhibit risk factors for AD" so not going to be much help for someone, like my father or pippin's mother who already had/have it and it is rather advanced. it is a discussion on preventative things, to stop it before it starts. I know for my father, may RIP, this would not have been a help, since Alzheimer's is usually diagnosed too late, in most cases, not ALL, and so preventing AD would not be applicable here. But thank you for the information.
• in reply toinvoluntarydancer
I agree completely with all you have said involuntarydancer. I hope others read your comment and take on board what you have said.
I agree 100%. Anyone who has been through the hell of withdrawal from da's would agree with you. I am the most positive person but daws very nearly broke me.ferrous bisglycinate did not help at all.
Jools
nightdancer• in reply to
tredlight, I have to object to the use of the word "blip" when you are discussing DAWS (dopamine withdrawal syndrome) SOME, very FEW may not have s hard a time as others, but saying that you are SURE it will only be blip and NOT torture or a nightmare, that is not being fair or honest to people who may be going thru this. We can NEVER generalize when it comes to treating RLS. So, while you are certainly free to say what works for you, and so on, there is a difference between an opinion, a well informed opinion, and fact. So, let's keep that in mind when doling advice out. There is NO ONE WAY to skin a cat, as they say.
• in reply tonightdancer
Three words: RLS = anemic brain.
nightdancer• in reply to
Why in one post, tredlight, do you say iron bisclycinate will take care of DAWS, and then in this post above , you say you would not expect it? now you are getting people confused, and my inbox is blowing up with messages.
nightdancer• in reply to
Involuntary Dancer is well informed, and he/she makes a very valid point. "Torture" is the word I have used many times, and my group members who have gone thru DAWS. Have YOU ever had to withdraw from a high dose of dopamine meds, tredlight? If so, you would not use the word "blip" and you would know for many, many people that DAWS is torture and a "nightmare" for about 80% of the people who have to come off the dopamine meds for several reasons. Our brains miss the extra dopamine, and that is, of course, the "pleasure" hormone, and our brains get very angry when we take that pleasure away. It is not a mental thing, it is a very real physical withdrawal, and you have previously said that you want people to be prepared and know what to expect, etc. So, why would DAWS be any different? I guess I just do NOT understand why you expect everyone to follow your every word and you dismiss other peoples' experiences that are very real. I also am one who likes to be prepared, and thank goodness I NEVER had to go through DAWS because that class of meds doe snot work for me. But, I certainly do have decades of experience dealing with people who have has severe withdrawals, and it is not pretty. have you watched Kay Redmond Jordan's video blog on UTUBE and her 31 days of hell when she was withdrawing cold turkey from a dopamine med? it brings tears to my eyes, and she certainly was not making THAT up, or her husband who wanted to take her to the ER several times in that month. it is scary and informative and truthful. Her video blog shows how NOT to do it, cold turkey is cruel and inhumane.
No, I can't possibly disagree with you more. RLS is now well-defined and you only confuse people when you say it's different in everyone. I know you don't like to hear it but it's the same. The symptoms may vary as they can with the flu but the flu is still caused by a virus. At a recent meeting of the IRLSSG, doctors and scientists from all over the world, agreed that the word "syndrome" should be dropped as it does not adequately indicate that "the condition has a WELL DEFINED symptomatology and pathophysiology. Recent advances in the science of RLS (including genetics, dopamine transmitter and brain iron discoveries) and a revised definition excluding mimickers warrant the elevation of RLS from a syndrome to disorder."
You do a dis-service to people on here who are trying to come to grips with what they have by telling them it's just a big mystery and different in everyone. It's time to take the mask off the monster. We have anemic brains and thus a lousy dopamine transport system. That's why the DAs work so well and a form of iron that is able to cross the BBB too.
Sorry Dancer, I don't like fairy tales, I like cold hard facts, no matter how cruel it seems to you that all that suffering you underwent is caused by a genetically anemic brain. I'm very glad to hear that you are in good health other than the RLS. The last thing I was going to mention is that RLS is much more common among obese individuals and that at least in mice, calorie restriction has been shown to up-regulate dopamine receptors. Just think, if we all accept the fact that we have small and pathetic dopamine receptors then instead of blindly looking for answers in the dark we can be researching ways to increase the size and number of our receptors.
involuntarydancer• in reply to
I did not intend to say rls is 'different in everyone' or that it is 'a big mystery' and reading through my post again, I do not think I did say that. I fully accept that there have been great strides made in the understanding of the physiology of the condition, disease, syndrome, disorder and/or presentation. Of course sufferers of rls have far more in common than they have differences.
What I did intend to say, and perhaps I was insufficiently clear, was that there is a relatively wide divergence in presentation and response to treatment across the rls community. Surely the very fact that you say everyone should in theory respond well to iron bisglycinate and I reply that in my case that is not so is an absolute illustration of this? Are you saying that I do not suffer from rls? Or that I am misrepresenting my condition or my response to treatment? Why on earth would I do that?
Neither did I intend to say that you are either correct or incorrect in your proposition about poor dopamine receptors and/or anemic brains.
I would observe that I have not seen rls explained in quite this way anywhere other than in your posts and I think you may be underestimating the amount of extrapolating you are performing on the various reports of research that you cite. Your posts can be very forceful so that it may seem to some that they carry greater weight than an individual interpretation should. Moreover, as I have already said, the tone does sometimes tend to be dismissive - i.e. my hypothesis is correct and must be accepted; anything that does not fit in with it should be discredited or ignored. This does not serve to increase confidence in your proposition. Although I am not saying that this is the case here, it may be worth bearing in mind that this sort of thinking caused eighteenth century chemists to fritter away much useful time and information seeking the non-existent property phlogistan.
I am not trying to do a 'disservice' to anyone or to stand in the way of anyone seeking a better understanding of their rls or relief from it.
I am certainly not intending to purvey fairytales. I cannot see any fairytales in my post. I would not describe my experiences as fairytale. I find the experiences and observations of others, including yours, serve to illuminate me in my search for optimum solutions and I suppose I hoped that I might contribute something to others by recounting mine. I am not sure what 'cold hard facts' you are referring to - are you suggesting that what I documented in my post was not 'cold hard facts'?
It is frankly all one to me whether rls is called a syndrome or a condition or a disease or a disorder. In common with everyone on this site I want to find a treatment that allows me to live a normal life. What I can do without is false dawns and unrealistic promises and, perhaps it is overly officious of me, but I do not like to see them extended to others.
I was not aware of any studies that show a link between obesity and rls. I am not obese and not nearly obese. It would be tempting to observe that this represents an instance of a difference within rls presentation but I simply do not have sufficient evidence to back up such a point.
• in reply toinvoluntarydancer
I dont know either of any real connection to being obese and RLS. I am also no where near obese and i still have RLS, and mine is Primary and inherited from my father, he was skinny as a rake. People can be large and skinny and still have RLS.
there is no KNOWN connection between RLS and obesity. Well said Involuntary Dancer!!! "Forceful" does not always win the race or the discussion. It is essentially bullying people to listen to her way or NO way, and the word hypothesis is absolutely correct. With you on your commets 100%! keep up the good work!
I know more skinny RLSer's than overweight ones.
• in reply toinvoluntarydancer
The important thing to take away from this discussion is that the iron helped you quite a bit and continues to do so. I am hopeful that as you continue to wean yourself off oxy you will have a clear handle on what your baseline RLS is like. I'm not interested in drama, it's boring. The connection between obesity and RLS is interesting and exciting. The possibility that daily calorie restriction (even if you're not overweight) or a weekly fast (meaning less than 600 calories) might up-regulate our receptors and provide some relief after a time, as it does in mice. Or, if you read another post of mine, it seems that berberine is a D1 and D2 receptor antagonist that will stay in system about 3 to 4 hours. My understanding is that what "antagonizes" our receptors will up-regulate them just as the agonists down-regulate them. Maybe the medical community has it all wrong, instead of agonists by night we with RLS take antagonists by day.
nightdancer• in reply to
Well, that is an interesting theory and statement. I always question everything, BUT, I am not about to write off the doctors at Johns Hopkins, or Dr. Buchfuhrer, or the many others who have made this their life's work. AND, I think, since you brought it up, you enjoy drama, since you create most of it yourself, as proven by the fact that you have had at least 9 screen names, and every time you get put on restriction, you come back with another name. IF you did not enjoy drama this would stop, but you keep pushing your personal agenda and people ARE tuning out. You have said as recently as 2 weeks ago, that Dr. B's word is "gold", so now you want to write him off, along with other RLS experts? hmmmmmmmm
• in reply toinvoluntarydancer
healthguides.healthgrades.c...
• in reply to
See number 3 and you can also review the longer 2009 analysis of the 2x to3x higher prevalence of RLS among obese individuals. More studies are needed but it makes sense that if continuous under-eating, severely so, up-regulates our receptors, then continuous over-eating may down-regulate our receptors and lead to RLS in pre-disposed individuals.
• in reply to
I am not under eating or over eating, i eat normal. And i cook from scratch, no rubbish food. Its all theory as usual.
nightdancer• in reply to
Theories abound, for sure.
nightdancer• in reply to
That is very basic information. EVERY health site says not to gain weight. That is synonymous and assumed that that is one thing that we need to do is watch our weight and our calorie intake. As said before, a lot of us know more skinny RLSer's, or "normal weight" RLSer's. I know a few obese people with RLS, but that would be the same in the general population. No sugar, no caffeine, all basic sleep hygiene stuff. But, if it helps one person...............................................
Why in gods name have we been given this medication, even though it works it sounds evil
apbnab,
You are absolutely correct in that it is at best questionable that rls sufferers have been allowed to augment on the dopamine agonists, indeed that their medical carers have facilitated and encouraged augmentation by increasing the dose of the dopamine agonists.
However it is worth bearing in mind that the d/as are fantastic at treating the symptoms at low doses and if they are carefully managed (so that there is stern warning at the outset to be vigilant about the possibility of augmentation and absolutely not to increase the dose above the upper limit for rls) the drugs can provide considerable relief for long periods. For me, they remain the single most effective pharmaceutical to treat my rls. It's just that I am reluctant to return to them after the horrors of withdrawal. Hopefully though it won't be so bad for you. In some cases it is possible to return to them once you have washed them out of your system for a week or two after withdrawal though I understand there is a greater risk of augmentation once it has occurred once.
Involuntarydancer you are right about going back to a dopamine med after withdrawals. there is a greater risk of augmentation and quicker than previously when someone one has augmented. The Neupro Patch can be used which is a better dopamine med to take than the other DA's as its a slow release over 24hrs. BUT, its best to have a break of 6 months or even longer before thinking of trying the patch. Also to keep the patch at a low dose, taking another class of med along side it can be helpful. Again the patch can still cause augmentation but its an option to think about if all other meds have been exhausted.
Yep, once you get off the dopamine med, there is no good reason to go back on it. They work well at lower doses for some people, but some doctors and patients think more is better, and with this class of meds is the exact opposite of that. Always, with any meds, lower is better, and if they do not work for you at the lower doses, then the dopamine meds are not the class of meds for you. To be fair, these meds were approved in the early 2,000's for use in RLS. Then years later , after people had used them for while, we and the experts came upon augmentation, and things have gone downhill from there. If one can take them at the recommended therapeutic doses and they work for you, then great. Liver damage is rare, but can happen with any med, even over the counter pain meds like Tylenol. A 12 week study cannot possibly show any of the long term effects, but we and the docs are finding out in the last couple of years, how these meds can affect you in many ways. Many new warnings from the FDA on these. I echo everything Involuntary Dancer has said. Being forceful does nothing but turn most people off. That is evident.
And, to be really clear here, Ropinerole/Requip is metabolized in the liver, while pramipexole, even though the same class of meds, is excreted thru the kidneys, so they do not have the same actions. Pramipexole also has a longer half life (8-12 hrs) so will stay in your body longer, and Ropinerole is much shorter acting with half life of 4 -6 hrs. This little factoid may help some people.
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