New to this forum

[cynthus]

Hello. My name is Cindi and I have had RLS since I was a child. I am now 57 years old and it has worsened over the years. I was taking requip but am stopping it since it no longer works for me. Hello to all you fellow sufferers out there!

[rthom]

Hi cynthus:
Great to hear from you. And sorry to hear you are having trouble. Keep in touch!

[Polar Bear]

Hi Cindi and welcome to our discussion board.
Sorry to hear that the Requip no longer is working for you. How long were you taking it before it ceased to be effective.

Are you tapering off or stopping cold turkey, I just wonder if you have another medication to help you come off the Requip.

We look forward to hearing more from you and how you are managing your symptoms as you reduce your medication.

[badnights]

Hi cynthus, welcome to the board. When you say requip is no longer working for you, do you mean it has no effect when you take it? Or does it seem to wear off too soon? Or does it seem to be making things worse? I had to stop Requip because it made things insanely worse.

Coming off Requip abruptly usually causes worsened RLS/WED symptoms for around 2 weeks, sometimes unbearabley worse. The recommended treatment during those two weeks or so is usually an opioid medication like oxycodone. Have you heard of that withdrawal?

[cynthus]

Sorry it has taken me so long to get back to you. But, what I meant was that the requip is not working at all. It does have a bit of a sedative effect but it wasn't helping the WED/RLS. I participated in a webinar last saturday morning and the doctor there said I was experiencing "augmentation." My doctor had me stop it and I'm seeing her again this wednesday to discuss other options. I did cut the dosage in half for a couple days before stopping it and had no problems with a rebound effect. However, I did take a vicodin one night because of pain. I have an issue with that, anyway. But regarding the WED/RLS I have it frequently, espec. when not actively engaged in an activity. Call me silly, but it seems to be worse when I drink my favorite beverage, tea. That's decaff tea that I'm drinking. I wonder if there's anything in tea besides the theophylline/caffeine effect of regular tea that would predispose one to bouts of RLS... ...I'm not a chemist, of course, but would anyone out here in cyberspace know anything about decaff tea causing a worsening in symptoms?

[rthom]

A further question about that, is the process the same for decafinating tee and coffee? I have a terrible time with it, never knew why. Just avoid it.

[cynthus]

According to what they say on the Longview Coffee site (from whom I buy my tea) the process is done using CO2, but is supposed to still be a natural decaffeinating process. The tea leaves are broken down during the process so a smaller bored strainer is necessary but it tastes remarkably like regular tea when brewed.

[Baffledsilly]

Hello cynthus,
Welcome to the forum. As for "decaffeinated" unless it says 100% it may have up to 10mg or more of caffeine. Not all decafs are fully decaffeinated so you have to be careful. And if it's just herbal tea with no writing on you even have to be more careful, be sure it is indeed filled with caffeine. Quite often they uses green teas or other caffeine "infected" teas. To blend in the herbal teas. So my advice is to stick to 100% decafe teas, I drink decafe Rooibos(not an indorsement! lol) and I don't get any reaction to it. Keep trying different teas until you find one that doesn't give you beehive legs))

[badnights]

Someone posting here last year had a theory about chemicals in coffee other than caffeine exacerbating RLS/WED. I bet there are lots of things that do it. I would say, if it's clear the tea causes it, avoid the tea!

Augmentation is a well-known consequence of taking dopmine drugs for RLS/WED, it eventually affects about 75% of people who take them, and 25% bad enough to have to stop taking them. You might enjoy the information in this document about RLS/WED: http://www.rls.org/Document.Doc?&id=2112; it's written for medical professionals but the language is easy to understand, and it's packed with information about the disease.

[badnights]

sorry, the semi-colon got included in the link so it doesn't work, try this:
http://www.rls.org/Document.Doc?&id=2112
Also, it's in Polar Bear's signature
(thanks for letting me know, Randy!)