Restless Legs Syndrome (RLS) Discussion Board

Tuesday, March 20

Welcome to

davec, who wants to get up to date information on this disease , newer treatments etc.

Please post a note telling about your RLS and asking any questions that you have. As for up-to-date info, take a look at the research topic in the General Topics forum.

Wednesday, March 21

Welcome to

GLASSGARDNER, who has had RLS for many years and has been thru Requip, Mirapex and Neupro with varying degrees of success. GLASS has developed narcolepsy from the medications and recently fell asleep driving because of it. Glass is frantically trying to find a course of treatment that will work without the side effects of the medications. Glass recently tried to stop meds and try Magnesium and Quinine with mixed results.

First off, quinine doesn't do any good at all and magnesium is only mildy effective if you have a deficiency. Please post a note telling us about the severity of your RLS symptoms and the doses of Requip, Mirapex and Neupro that you were taking. Also let us know if you were experiencing any of the symptoms of augmentation on them (worsening of symptoms followed by higher and higher doses). Has your doctor been monitoring your ferritin level and do you know the number? With that information, we should be able to offer you some suggestions for treatment options that you can discuss with your doctor (or use to interview new doctors).

Our newest member is bbellde, who has RLS and it's getting worse every day.

So sorry to hear that. Do you take a dopamine agonist, such as pramipexole or ropinerole? If so, it could be augmentation - this is a worsening of symptoms followed by higher doses of the drug, followed by worsened symptoms, etc. Check out the posts on augmentation and see if you think this may be the culprit. Please feel free to start a new post and tell us about your situation.

Friday, March 23

Welcome to

Bobblehead, who has had RLS for 5 years and wants to help others with a solution that has worked for Bobblehead.

Please post a note telling us about your solution as well as a bit about your RLS.

Friday, March 23

Welcome to

phillies3737, whose father was Dxd w/RLS over 30 years ago. He was followed closely by Dr June Fry in Philly. When hery (ex) husband and she were at their wits’ end because 5 year old couldn’t fall asleep for hrs & when he did fall asleep couldn’t stay in his bed he was also Dxd with severe RLS. Dr Fry then Dx’d her with RLS. She looked back on all the years spent at night desperately trying to sleep since childhood.

Please post a note telling us what you are currently doing to manage your RLS and asking any questions that you have.

Saturday, March 24

Welcome to

nanettesmolly, who didn't get RLS until in her late 60s. And it may be hereditary in her case.

Yes, it can be hereditary. Please post a note telling us about your symptoms, what you are doing to manage them and about your relatives who have RLS as well.

Tuesday, March 27

Welcome to

Irmajs, who developed RLS after surviving a hematoma at the base of her brain. She has been taking Ropinirole for two years and it has gotten progressively worse during that time. She is desperate to find a doctor that knows how to treat RLS and takes Medicare.

Please post a note telling us where you are located and what dose of ropinirole you are taking. Many of us have found that we have to travel to see a doctor who understands our needs and knows enough about RLS to be able to provide treatment. So, if we know where you are located, we will hopefully be able to point you to a doctor who "gets it".

29 March 2018

Welcome today to:

Sleepyone whose RLS disturbs sleep. Sleepyone feels groggy and unable to function during the day.

Please read through the Just Joined Forum for lots of useful information. It would be good if you would post and tell us a little more about your RLS, do you take medication, and how you have coped. We are here to try to help.

Friday, March 30

Welcome to

pjohnh, whose RLS started in 2009 & in the last year he is feeling pretty desperate. Serious lack of sleep almost night after night, cannot do the theatre or movies because he can't sit still, worst is being a passenger in someone else's car. He takes a 1 mg generic of pexola called Oxpola, but that no longer helps to keep RLS at bay. He is purchasing a TENS device to see if that will help.

Please take a look through our forum on Augmentation. Your dose of oxpola (aka pramipexole) is quite high for RLS and it may no longer be working due to augmentation (which is something that most doctors do not understand).

Welcome to the discussion board, Getinby. We are sorry you have RLS/WED but this is a good place to be for people who do. Browse and around and post when you feel like it.

Saturday, March 31

Welcome to

Initials2018$, who has been suffering from severe RLS at all hours of the day and night. Initials also has pretty severe peripheral neuropathy and had been on opiates (Norco 10/325, 6 -8 per 24-hr. per day) for years. Initials wants off of the Norco and is looking for any and all legal alternatives.

Please post a note telling us about your current symptoms and any alternatives to Norco that you have tried. Hopefully we can offer you some new suggestions to consider.