Hello! I am new to the community, and I am so grateful to have found fellow night walkers! I have had severe RLS for at least 10 years, and I have currently been taking ropinerol for some marginal relief.
Well, I have just discovered as a new mom that apparently ropinerol counteracts prolactin, so I am having a helluva time trying to breastfeed. Had anyone else had this issue, and if so, what was the solution? I have tried stopping the ropinerol but it feels like I am being absolutely tortured. I already am getting very little sleep as a new mother, and now I can barely sit still to even TRY to nurse my newborn, or even hold him for any length of time without the horrible creepy-crawlies I’m not only my legs (BAD) but my arms too. I cannot rest. I see a neurologist (FINALLY) in a few weeks, but Until then I am just dying. Help!
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Newmomma567
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It seems your best solution is to stop taking ropinirole, but you hsve to be careful how you do this because as you've already experienced, you will get withdrawal effects. This is usually worsening of symptoms and sleeplessness. These lessen in time, but can be severe.
Therefore , in order to minimise withdrawals you will need to reduce the dose very slowly.
It may also help if you start taking an alternative RLS medicine. More on this later.
A possible way of stopping ropinirole is to reduce it in steps of 0.25 to 0.5mg. If 0.5mg, withdrawals may be worse, if 0.25mg it will take longer.
You can reduce the dose about every 3 - 4 weeks, or if withdrawal.effects settle earlier, then every two weeks.
You can cut up the tablets to get the right dose.
Some people find taking an opioid helps with withdrawal effects, but this is not a good idea, I believe, if you're breadtfeeding.
Iron deficiency is a causative factor in RLS and as you've been through pregnancy and are now providing for your baby, your stored iron levels may be depleted. This does NOT necessarily mean you have iron deficiency anaemia.
Taking an oral iron supplement may help counteract this. The most recommended is "gentle" iron, ferrous bisglycinate. NOT a prescription iron! Gentle iron is, as implied by the name, less upsetting to the digestive tract.
Oral iron, unfortunately, is not easily absorbed. It may be that only about 2% of what you take gets into your system. In order to increase absorption -
1. Take it 30 mins before or 2 hours after eating
2. Drink a glass of orange or take a vitamin C tablet at the same time
3. Do NOT take it every day, take it once every two days.
Withdrawing from ropinirole is not easy. This is something Drs don't seem to warn you about.
It is a great shame you weren't warned about ropinirole and breastfeeding before. I hope it works out OK.
Yes, I am actually pretty upset about not knowing that 1.) ropinerole has augmentation issues, 2.) it can give you crazy withdrawals and 3.) it will kill your ability to breastfeed.
I've been reading your responses to other questions in the forum and I must say, I believe you missed your calling as an RLS specialist. Your links and your responses have prompted me to do a lot more research and to realize how poorly the neurologist I began seeing understands this problem. I currently searching for a new doctor, as this one simply suggests I keep increasing my dose of ropinerole (I was already taking 1.5 mg), and when/if that doesn't work, to switch to neupro patches. When I voiced my concern about augmentation, and the problems associated with dopamine agonists, her response was that I "had time" and "I was too young" for it to be an issue. In other words, I got blown off. Maddening.
However, it turns out I am in fact severely anaemic. My ferritin level came back at 7. I am currently in the midst of a series of 5 IV iron infusions. Fingers crossed. RLS is still horrible, but I at least have some hope that this will alleviate some of my symptoms.
I wanted to thank you profoundly for all of your help in the meantime. I never understood some of the nuances of this disease, and your insight has given me new motivation to advocate for my health.
Well done for following the various leads, and especially for carrying out your own research and making your own decisions. Sounds good for now. I hope the RLS and your quality of life improves soon.
Btw, how are you and your child (son?) doing together?
I’m doing much better now that I convinced the doctor to let me add some Tramadol (50 mg is all she will allow) and I went back to a low dose of ropinerole. (.5mg). The neurologist I was so excited to see was just awful about it, however... essentially accused me of drug-seeking behavior, and told me I needed just just stop even trying to breastfeed my son at all, and just start a Neupro patch. Her tune changed when she saw the blood test results, though. Decided in*was* actually suffering a lot, and after checking to make sure it was ok to take Tramadol while breastfeeding (it is,) said she would let me have it until January. She keeps pushing higher doses of dopamine agonists, and will offer no alternatives. It concerns me a lot, (plus her bedside manner is atrocious) so I am looking for a new doc.
I still have symptoms most nights, but not like the hellacious withdrawal RLS I was suffering from before. Most importantly: Baby is great! He’s smiling at me now, and we’re doing alright with the breastfeeding too. He gets most of his food via formula, but I have been encouraged by the pediatrician and my OB that even an oz or two of breast milk everyday is incredibly helpful for my son, especially when we’re in the midst of a pandemic. So, I just am just doing the best I can and taking this day by day.
Thanks for the update. Why do so many doctors start out on automatic mode and only when pushed start to look at us as individuals? I just wonder.
Your second paragraph made me smile, as that is what life is about, I think; meaningful relationships. I am glad you can enjoy again being your sons mom.
I'm really glad that you've found a possible major factor in your worsening RLS, i.e. the anaemia and are getting appropriate treatment.
I'm also very pleased that you have been doing your own research. It's really important, I believe, that people become "experts" in any chronic condition they suffer from.
I hope you do manage to change to a better doctor.
I'm not sure what can be done about people like the neurologist you mention. All doctors registered with the General Medical Council (GMC) are supposed to adhere to an ethical Code of Conduct and I note that the GMC have recently updated their guidance on decision making (about treatment) and informed consent (to treatment).
It doesn't appear to me that this neurologist is adhering to this ethical guidance. It seems to me that there are a significant number of doctors who's conduct is unethical and they very often get away with it, sometimes because we're not clear of our rights and we're not clear what to do about it.
In particular, in your case, your right to decide NOT to consent to taking a particular treatment, a dopamine agonist, is not being respected. Ethically, doctors are supposed to warn people of the risks of a particular treatment, not be dismissive of them. To accuse you of "drug seeking behaviour" is not just apparently personally abusive, it also seems coercive and hence again, is unethical.
I'd just like to say that you might consider reporting this to the GMC, this can be done online.
It's good to hear that your RLS, hopefully, is now getting sorted and that your baby is doing OK.
Interesting point. I have actually been considering what do to, as she has said a number of really insensitive things to me in the four or five times I have spoken with her either in person or via the telephone. One call actually left me in tears, as she told me SHE had decided that I should stop trying to breastfeed altogether because I "wasn't producing enough to do any good," and I "will dry up soon anyway." (So, the neurologist all of a sudden is a lactation specialist too, apparently.) Thankfully, my mother is a level 4 NICU nurse and talked me off the ledge there, explaining that ANY amount of milk is great, and to treat it more like medicine than food. Another time she went through my entire rx history looking for any painkillers, and demanded to know why I had rxs over the last two years. (A miscarriage where I hemorraged multiple times and ended up in the ER more than once, and then a D&C--both things she failed to add to the referral to the hematologist who was at a loss for why I had such low hemoglobin and iron.) But we are not talking vast amounts of drugs... less than 10 in all accounts. In this same investigation, she appears to have overlooked the multiple attempts I made to switch to gapabentin or Horizant, etc.
Luckily, I have a number of medical professionals in my immediate family who have helped me navigate this, but I am still left undertreated and without any alternatives. I think I might have found a new doctor, but I fear it will be a similar experience. I just don't know... but I will look into a report. If it's anonymous, I might try it. No one should be made to feel the way I was made to feel, and especially not when you are already in such a delicate state.
I'm not sure if you can report a doctor to the GMC anonumoisly. Nor can you make a complaint anonumously.
That's possibly why a lot of people don't complain or report because they think they will be treated badly ad a consrquence.
I believe there are safequards against that and it doesn't deter me.
I have recently submitted a complaint about two consultants at a local trust. I wrote straight to the Chief Executive as I've found the responses I get from PALS (Patient Advisory and Liaison Service) less than satisfactory.
If you do complain or report you do need something specific to report. It also helps if you have evidence.
I once made a complaint about a consultants verbally abusive remark to me and he simply denied it. With my current complaint I have documentary evidence of what I'm complaining about.
I do know that you can report doctors for conduct which could bring the profession into disrepute.
I once contacted the GMC some years ago when my daughters fiance (now husband) who I'd never met or ever spoken to rang me up and intriduced himslef as a doctor. He then proceeded to verbally abuse me for a considerable length of time. I did manage to record most of what he said. Eventually, my partner took the ohone off me and tried to get him to repeat his name, but he told her to F off and hung up.
I actually spoke to somebody at the GMC and they did say I could report this because.although it was a personal matter, he had introduced himself as a doctor.
In your case, unfortunately, since the misconduct is verbal ,they could simply deny it. However, you can request to see what they've written about you in their record.
To get off Ropineral, be sure to start an alternate rls medication at the same time. In fact, let the alternative medication build up a little first before tapering off the Ropineral. I did this with Gabapentin and had no problems with withdrawal. Hope this helps.
A possible alternative RLS medication to ropinirole is pregabalin.
I can find no mention that this affects lactation.
It seems that only a small amount of this gets into milk and hence it's not a great risk to your baby. You could discuss this with your doctor.
Pregabalin can be taken at the same time as ropinirole, so you don't have to stop ropinirole first as some people claim. It takes about 3 - 4 weeks to start working.
For RLS the starting dose is 25 - 50mg , once a day, and it can be built up at a rate of 25mg every 3 - 7 days. It can make you drowsy at first.
Isn’t pregabalin in the same class of drugs as Gabapentin? I tried that (more than once out of desperation) and it did nothing, even at the highest dosages. Same with Horizant, which sucked because they don’t seem to affect prolactin levels the same way as ropinerole. I can’t even tell you how much flack I got for continuing to use ropinerole while I was pregnant, but the benefits outweighed the dangers. I just could not get any relief. I tried magnesium creams, supplements, other drugs... nada. The only thing that seemed to help consistently was opiates (which I discovered by accident after a miscarriage last year- unrelated to the use of ropinerole, I might add), but to find a doctor willing to prescribe anything like that is next to impossible. I am PRAYING this neurologist takes pity on me and gives me an Rx for Tramadol or something. I noticed in the last few days that it really helped (although didn’t completely relieve the symptoms) and it not contraindicated for breastfeeding.
On another note, I am just so, so glad that I found this forum. I feel like I’m insane when I try to explain what this feels like to other people who have never experienced it. They just have no idea how completely debilitating it can be.
I wouldn't be just very upset if I was you, I 'd be angry.
Not that it would do any good.
Yes pregabalin is the same class of meds as gabapentin, so I'm really sorry it didn't work for you.
That leaves the opiate option. I hope the neurologist is sympathetic. If not there are some excellent RLS experts in the US, depending where you live.
Do try the iron though.
It does sound as if you have idiopathic RLS inherited from your father. Many people with RLS also have PLMD (Periodic Limb Movement Disorder), i.e. the kicking.
I’m not sure what the initial trigger was, although I keep seeing on this forum that antidepressants can kick it off, and I swear I have been on all of them in my 30 something life. My father also has issues with it (to the point where my parents no longer share a bed because he kicks and thrashes so much), so I assume there is a generic component to it too.
Alas, I am in the US, so your reference won’t work for me. I wonder if there is someone on this side of the pond that has similar credentials, however?
Your best and safest bet is to contact Dr Wendy Jones ( breastfeeding Network pharmacist) using the email direct message option on the “The Breastfeeding Network Drugs in Breastmilk information service” which is: wendy.jones@breastfeedingnetwork.org.uk
( It is advisable NOT to post on the fb page itself as these messages are often missed).
Secondly, I was you 8 years ago. I had just had my son and basically was drying up, I wasn't producing milk at all. The consultant finally made the link that the medication was stopping the production
After a lot of soul searching I realised it was best for me to switch to formula for my son. You have to weigh up the following:
1. Stopping the medication, it takes weeks to get it out of your system, so you wouldn't notice a difference in your supply of milk for a month / two months possibly more.
2. Stopping the medication has its own side effects that'll make you feel awful.
3. Being a new mum is hard enough as it is, let alone the agony of RLS. The saying "happy mum, happy baby" is a cliche, but so true. Your health and wellbeing is extremely important.
This is why I made the decision to switch. I know that comes with it own anxieties and worries ,but I just would not have coped through those first few months with RLS thrown into the mix.
Not sure if this is what you wanted to hear, but it really resonated with my own experience.
I am already supplementing with formula, and I am mostly ok with it. But I was trying to get to at least 6 weeks with *some* breast milk. And since I have been off the Requip- withdrawal aside- I am already producing more, by a large margin. 🤷♀️
I really do feel for you, I remember being there myself, and I read your post about the judgement of being on it whilst being pregnant, I also had that too.
It’s hard to say. I’m not clear on what exactly the withdrawals are? I am extremely stiff, have a lot of joint pain, and my RLS symptoms have skyrocketed. I barely stand to hold my son for any length of time because I have to MOVE. And now, I have it in my arms too, and my insomnia is worse than ever. I just feel horrible, exhausted, and creepy-crawly EVERWHERE, and I’m starting to loose it. I’m calling the neurologist AGAIB in the morning to see if there is any possible way to get in earlier because I am in agony. I’m also going to call the original prescriber of the meds to see if she can help transition me better, because this feels like insanity.
Oh, I still have a few Tramadol from my emergency C-section and that is helping a bit, but yeah. I’m at a desperate loss here.
Well dobe newmomma, but you pay an extremely high price. The skyrocketed symptoms that have even moved into your arms are most likely withdrawal. Depending on what dose of ropinirole you were and for how long, it may take another several weeks to settle a bit. I don't want to and can't make choices for you, but I would think that is far too much to deal with. Even without a newborn baby withdrawal from ropinirole is very very exhaustive and almost unbearable. Please so phone or email (phone is faster) Dr Buchfuhrer at Mayo or Drs Allen or Earley at Johns Hopkins, depending on where you are. Or, if that doesn't work, get in touch wit someone from rls.org. Your situation needs an urgent relieve. And please lower your standards re breastfeeding. I wasn't breastfed myself, nor was my daughter, and we turned out well. Warm and caring and stable people - if I may say so about myself ☺️.
I echo Lotte, your health is so important. You might want to think about going back on the tablets and look at withdrawing again 6 months down the line when you're more into a routine. I almost went insane withdrawing from them at easter, I'm still struggling now. i used a combination of tramadol to withdraw half a tablet at a time.
Congratulations on your newborn! That should he first and foremost.
I endorse jenki's advice about considering to stop trying and resort to formula. When I had my child i couldn't breastfeed too, for a different reason. I tried all I could and contacted after a few days a breastfeeding organisation to help me. They said - to my surprise - the same as jenki. It ia more important to focus on your child and being his mum. You can bond very well without breastfeedings. Makes it easier for his father to feed him and bond to him too, they said. That advice was a huge relieve for me, especially coming from them.
Although an opiate may work, I am not sure I would risk that. But if you want to consider it, contact Dr Mark Buchfuhrer, he is one of the 'biggest' RLS specialists and researchers. If you email him at somno@verizon.net he answers quickly, usually within a day. He is based in Los Angeles, CA and associated with the local Mayo Clinic. The RLS centre at Johns Hopkins at Baltimore MD is also excellent.
Your health and sleep is the most important thing right now.
Ropinirole is a powerful drug and you are in full blown withdrawal- it’s worse than heroin/crack cocaine withdrawal. The constant, intense RLS you’re experiencing and lack of sleep is classic Ropinirole withdrawal.
As Manerva advises, raising serum ferritin will probably help you enormously.
However, right now it’s essential you get sleep.
Forget about breastfeeding- your health is the most important thing right now. Your baby will thrive on formula milk.
Your baby needs a happy and healthy mummy and you need your sleep. If you still have ropinirole, you can start taking it again to stop the withdrawal symptoms. You can then reduce very very slowly when you have discussed your condition with a neurologist and have alternative medications in place. Opioids Would seem to be your best option once off ropinirole. At low-dose these are extremely effective.
Where are you in the US? There are several RLS experts in the US and we may be able to point you in the right direction.
Make sure you are not taking any other medications which worsen RLS, like antihistamines and antidepressants and cough and cold medications like Benadryl.
I am hoping you manage to get some rest and sleep.
I am just pumping right now to get a few ounces to give my son some of my immunities via the milk which was advised by both my OB and his pediatrician. But I agree... A happy (and well-rested) mom is best for the child. I’m not on some crazy crusade to exclusively breastfeed to the point of utter misery for both me and my son. He gets mostly formula at this point because at the end of the day, I just want feed my child. I’m just trying to find a happy medium, and maybe some relief!
I went back on a super low dose of my ropinerole so that I could titrate down properly, and I was given gapapentin for the major pain and stiffness I’m experiencing in the meantime by my psychiatrist . It has helped a bit, and I have been able to get a bit of sleep. I am so, SO hoping this neurologist helps me in a few weeks, however. RLS sucks.
I have had so many blood tests done while I was pregnant that all indicated my iron levels were fine. I keep reading on here that the “normal” levels are still often too low. How does one go about getting properly tested for “brain” iron levels?
There are no words to thank everyone in this forum enough. Through a series of discussions, not only did I find a phenomenal neurologist in my area that has allowed to me start low-dose opiates and a titration schedule off of DA's, but I also have had 5 IV-iron infusions that helped fix the severe anemia I didn't even know I had. My quality of life has improved a hundred-fold, and I finally feel like myself again.
In short, I feel like the amazing information I got through this resource has brought me back to life. I cannot thank you all enough. I have recommended several other people that are struggling with this horrendous condition to check this site out because, for me, it has been a total life changer. God bless every one of you.
I should add... 10/325 hydrocodone and I have titrated down to .25 ropinerole. I am about to cut that one in half this next week and see how it goes. Doc said to expect some possible rebound symptoms, but she also doesn’t want me to suffer so I can take a little extra of the other med if I need it. I would love to see if, once I’m off the ropinerole, if I can decrease the opiate too, but we shall see. Either way, she was completely willing to listen and help and not make me endure torture day and night. It’s been a god send.
This is such brilliant news. Thank you so much for sharing with us. It is lovely to receive such a positive, upbeat message from you. So different from four months ago.
From one mama to another, look forward to the future and enjoy your baby.
You are always most welcome to pop in to let us know how you are doing.
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