Hi all. I am new and pleased to find this web site, and hear about others with RLS, and their experience treating it.

[Billdel]

I have been on pramipexole 3x day for a long time. Recently had cervical surgery and midway thru recovery, I began to experience serious balance problems. Use to play a lot of tennis, but now am reluctant to play, until I resolve the balance problem. In reading over the many comments here, and after some medical tests, it looks like it could be a pramipexole problem. This is both encouraging, to know the cause and discouraging, knowing I can not fix it without having my RLS come roaring back. Not playing tennis, has led to weight gain, which as yet, I have been unable to reverse.

I have found that regular stretching helps control the RLS. It does not eliminate it, but when I am having trouble, stretching reduces and sometimes eliminates the immediate problem, for awhile. I hope this can help others as it does me.

[involuntarydancer]

Hi, and welcome on here.

Thank you for your post. I too find stretches a very effective means of dealing with breakthrough symptoms. I also use diversionary tactics such as playing chess online which has an amazingly positive impact on the rls though doesn't bring the increased flexibility of the stretching regime!

Are you planning to eliminate the pramipexole? You will probably have come across some posts by those who have been through the process and know that you can expect your rls symptoms to go through the roof in the early stages after withdrawing from pramipexole. Most people take an opiate such as tramadol to deal with these temporary hellish symptoms. Unfortunately, some opiates can also affect your balance. It is hard to know until you try them. When you get off pramipexole you could try taking an anticonvulsant such as pregabalin to treat your rls if it remains bad (some people find that their symptoms settle down to such an extent that they don't return to prescription meds once they have got over the withdrawal process).

It would be well worth getting your serum ferritin levels checked if you haven't already. High iron levels (over100 is now recommended by Johns Hopkins doctors for rls) are also associated with improved rls symptoms in many sufferers. Very good luck. I hope you are back playing tennis very soon.

[Billdel in reply to involuntarydancer]

Thanks for the response. Would love to eliminate the Rx but I know from trying, the RLS becomes unbearable. I have my Iron checked regularly, but was unaware of the JH recommendation of 100+. Thanks, that's good info.

I appreciate the info. on the other options to control it if I try and eliminate the Rx again. Looks like that is my only option to get rid of the balance problem.

Take care and good luck with your RLS.

[involuntarydancer in reply to Billdel]

My GP surgery has a terrible habit of telling me that my serum ferritin results are 'normal' without giving me a figure. Normal can be as low as 12 in the general population - it is completely different for us and it is therefore important to get the actual figure.

[Billdel in reply to involuntarydancer]

Thanks for the response. I try to get my Iron numbers regularly. I responder earlier told me that Johns Hopkins has stated that with RLS you need you Iron at 100+, which I did not know. I will look into that for sure.

[FordFestivaBaby in reply to involuntarydancer]

Hello, you may have just said why my rls is driving me crazy. My iron and serum ferritin both very low, I wasn't able to donate plasma because they were so low. I have been self medicating with codeine and a fee glasses of wine and it's not really working, and it's very bad for my overall health.

Thank you for your advice.

[Billdel in reply to FordFestivaBaby]

Yes. I know from past experience that low Iron, and I am talking about much lower than the 100 recommended by Johns Hopkins, will cause my RLS to go crazy. Also when Vitamin B level drops it causes me a problem. I looked up the Johns Hopkins RLS information and found a terrific source of information on RLS. There are 3 videos by a Doctor, PHD, Christopher Early a RLS researcher. I watched with great interest. In the last one, he states that they have found that getting off the RLA meds is very difficult but, they have patients that manage their RLS with an IV Iron supplement only. Wow, I really like the sound of that. If you are interested, that web site is: hopkinsmedicine.org/neurolo...

Good luck with your RLS.

[FordFestivaBaby in reply to Billdel]

That's given me hope. I'll get onto it straight away. As a nurse I administer the prami to patients for RLS but I'd like to be able to give more information when I am asked about it, which I am often. So many people are suffering from rls. I really appreciate the information. Thank you and good luck with your rls ♥️

[involuntarydancer in reply to FordFestivaBaby]

If you administer pramipexole you are in a good position to alert those taking it to the dangers of augmentation and the awful consequences that follow from augmentation. You will be able to help them avoid much unnecessary suffering (torture), by telling them NEVER to increase above the doses recommended by the Johns Hopkins rls doctors and Dr. Buchfuhrer (they were recently revised downwards and I think currently are .25mg daily for pramipexole; 2mg neupro and .75mg ropinerole but you should probably check these as I am going from memory - any search on augmentation will probably reveal the levels as will Dr. Buchfuhrer's book A Clinician's Manual on rls). There are drugs other than dopamine agonists that can be used if these doses are inadequate to cover symptoms.

[FordFestivaBaby in reply to involuntarydancer]

I will do this. Also, the common dosage at work for RLS is 0.25 mg at preferably no later than 5.30pm. The only reason I baulked at it is because it is a Dopamine antagonist used for Parkinsonism, as you know. I have a CPD coming up for rls, I look forward to being able to contribute more, because this current, evidence based information, and the book, A Clinician's Manual on rls seems like a real breakthrough to me. I look forward to sharing it with others.

[involuntarydancer in reply to FordFestivaBaby]

You may we’ll have dodged a bullet by not taking the pramipexole. The US experts are now saying it’s better to start treatment with an anticonvulsant (gabapentin or pregabalin) rather than a dopamine agonist because of augmentation. There is another book: Clinicsl Management if Restless Legs Syndrome by Drs Lee, Buchfuhrer, Allen and Hening which is also excellent but just a bit older than the one written by Dr B on his own.

Please, if you have the time, would you post any useful tips you pick up at your cpd on Rls. Though I suspect if you travel through this forum you will be as well informed as any of them. I posted a new thread about a very recent study looking at Dipyridamole and Rls which looks very interesting. It would be super to hear if there is any feedback about that ...

It is great to have you on the forum

[LotteM in reply to FordFestivaBaby]

Incidently, what does CPD stand for?

[involuntarydancer in reply to LotteM]

Continual/continuous (?) professional development

[involuntarydancer in reply to FordFestivaBaby]

Hi and welcome on here,

The bad news: wine (and all other alcohol) is almost always an exacerbant of rls. I can't think of a single person who does not find that it sets off the legs at least to some extent. If you must have your wine, take it much much earlier in the day so that your system can process it before you go to bed.

The good news: if you take an iron supplement (most people on here take gentle iron - aka iron bisglycinate which can be purchased in most health food shops, including Holland and Barrett, and some chemists), preferably on an empty stomach AND you cut out the wine - you might find a big improvement in your rls.

Very best of luck

[FordFestivaBaby in reply to involuntarydancer]

Give me a week and I will report back to you on the iron and no alcohol. I really hope it works. I love my liver! I'll try and get through to my doctor as well. He's a lovely man but he is quite old and thinks a lot of these conditions are all in our head, or it's normal to end up with arthritis - just little things like that. My poor Dad suffered terribly with rls, and during my three pregnancies I was driven to despair, and I stretched, walked massaged, bought creams etc, nothing worked - disclosure - I didn't try wine then!

I look forward to updating the group. Ciao til then.

[involuntarydancer in reply to FordFestivaBaby]

Lol. Mine was awful in pregnancy too.

[Hidden in reply to FordFestivaBaby]

Iron does not help everyone but it did me. I was one of the lucky ones that got help right off. Although when I first started to take it I would do so in the morning. I did that for about a week and saw no difference. I came back on here and re-read the posts so now I take iron (for me I like ferrous bisglycinate) an hour before bed on an empty stomach. I expected it to no more work than my morning dose. Yet it did! One (sometimes two) 25mg capsules of the bisglycinate banishes the symptoms for the night. Most of the time by the time I take the iron the RLS has kicked in and then after about an hour it's gone. I've tried not taking the iron on the odd nights when I don't have RLS but then I wake up around1am with RLS. Best luck to you.

[Billdel in reply to involuntarydancer]

Thanks for a lot of good information. I started the withdrawal from Pramipexole and am having great fun!!!!!! I am wondering what to do later to control the symptoms. I watched the video of Dr. Christopher Earley on using Iron IV after recovery from augmentation. I think it is still in the Study arena, however. Plan to discuss it with my Dr. Do you go to a RLS Specialist or just your Family Physician? I think I need to get involved with a RLS Clinic?

[involuntarydancer in reply to Billdel]

I feel your pain. It is a tough gig withdrawing from pramipexole.

I have a sleep consultant who does know a bit about rls but is not pleasant to deal with and doesn't really know enough - she is determined that I should be on neupro and that it is not possible to augment on it even though I absolutely do augment on neupro. She is also resistent to the suggestion that it might cause impulse control problems in me - though it definitely does.

I have a GP who on his own admission knows very little about rls but who is prepared to prescribe me pretty much anything I suggest which is almost too much responsibility. I think he dreads my visits as I am usually armed with the latest studies and always with my copy of Clinical Management of RLS.

I get by with the help of my GP and the information I gather on here, from emailing Dr. Buchfuhrer and from the Johns Hopkins website and I am definitely doing better than when I placed all my faith in my sleep consultant.

That said if I lived close to any of the recommended consultants/clinics for rls, I would definitely go to one.

Are you in the UK or the US?

Good luck with the withdrawal

[Billdel in reply to involuntarydancer]

I am in Atlanta, Ga. and have a RLS Clinic at Emory University/Hospital. I do plan to get involved with them. But, I was surprised it is in the Sleep Management Department, which was instantly a "turn-off"

Thanks for the follow-up.

[DicCarlson]

Link to Johns Hopkins and Iron/Dopamine connection w/RLS. hopkinsmedicine.org/neurolo...

[FordFestivaBaby in reply to DicCarlson]

Thank you for providing the link ☺️

[Hidden]

Taking iron doesnt always help with RLS, So just putting that out there.

[karr54 in reply to Hidden]

always one in the crowd.