Before we make recommendations to newbies

Before we make recommendations to members with RLS, we should do as this psychiatrist does when a patient presents with depression: FIRST check what other meds they're on and what other medical conditions they have that could be affecting their RLS. Even if they've had RLS forever and been on RLS meds for decades, these questions should be asked before making recommendations.

psychologytoday.com/blog/th...

[Tiredparent Restless Leg Syndrome]

Thanks for that and I agree with you to a point but I think we have to be careful too. We are not medically trained (well most of us!) and not in a position to make medical judgements. We can point out certain websites that may list drugs that may make their condition worse but only a doctor will be in a position to know how different drugs interact with each other or whether they are suitable for that individual and their medical history.

Because there is a lack of knowledge out there among the medical profession, I think forum members fill that gap to help each other, perhaps more so than with other medical conditions. I think we can 'sign post' people to where they may find help or further information, or mention drugs or techniques that we have ourselves found useful but I think we need to hold back giving medical advice as such.

Regards

Rosie (Vice Chair RLS UK)

[Hidden in reply to Tiredparent]

Agree 100 percent with that Rosie x

[Hidden in reply to Tiredparent]

First I want to know how you're doing?

Since you mention it, I posted that for a specific reason. One of the more well-known and often referred to RLS websites out of Southern California has the "no no" list of drugs buried under "Treatments Section." It took me about 10 minutes to find it and I'm quick. Admittedly it was the first time I had visited the site and I never really planned on doing so because I was afraid it would cause me to primal scream. Which it did. That information should be in bold on the home page of the website, in place of "consultations" and "RLS books." (both of which I only saw one resource, how convenient) Who in their right mind would put drugs to avoid under the "treatments" section? I guess it wouldn't be good for the bottom line if idiots like me who used to take Benedryl and Zantac (and even melatonin) before bed saw that on his website and stopped those medications and got relief, rather than opting for a consultation or buying the book.

So where can idiots like me turn to? If not here, then where? How much suffering could we have prevented if back in early 2000 we got the word out to always stay on a low dose of the dopamine agonists and to switch things up if they became ineffective rather than raising the dose?

So far just about every person on here, that I've asked about what medications they are on, have indicated one of the forbidden drugs. Most refuse to give these drugs/supplements/hormone replacement therapy up but at least they have the knowledge. And knowledge is power. And the very last line of the SC website under "treatments" mentions the fact that in some women, HRT has worsened their symptoms of RLS.

Go to sleep for heavens sake!

[Hidden in reply to Hidden]

Hmmmm, no one else seems to dislike that website. I always direct people to it for better info. Telling them to scroll thro the treatment page til they come to the no no's for most RLSers. Those meds listed ARE treatments, but the doctor of that website warns that most of them can for SOME people make RLS worse. Its not a secret that you do not like the doctor of that website. But, he has helped hundreds of people over the years. People email him all the time, have got valuable information from him, have taken that information to their own doctor's who have in turn been informed. I would rather listen to what he has to say.

[nightdancer in reply to Hidden]

Knowing what meds to take and not to take by the RLS EXPERT Dr. Buchfuhrer is, as Elisse says, part of the treatment. It is not hard to click on treatments, go to that page and read it. Takes 1.2 seconds to get to the treatment page. Whether you liked it or not, terraverde, millions have been to his web site since 1996, and for me that is good enough. All the info I would want to give someone to read about meds is all on one page. Depends on what you are looking for, and if you expect to not like the site, as you did, then you are not going to like it. The fact that did you not look at his site before this is quite telling, and like you said you knew you would not like it, so you didn't. That is my take on it, anyway. IF ANYONE in RLS world is "in his right mind" it is Dr. Buchfuhrer, and that is a fact.

[Hidden in reply to nightdancer]

Then if he's a leader in RLS he knew about augmentation in 1996 and played it down for the next 16 years? I posted it here somewhere. I only posted one public discussion but there were several where he plays it down.

[nightdancer in reply to Hidden]

No, the pharma companies do the studies, get the drug out on the market, and then after a few years when people have been using it, do some side effects come out. No one had any idea that this amount of augmentation could happen in 1996, and let's not forget there were no drugs on the market for RLS in 1996. Mirapex was not approved for RLS until 2007. the only thing they had to go by was what time passing by could show them what would happen with these drugs, like most drugs for anything. The longer they are in use, the dosages get tweaked, as research goes on, and it all gets studied for years. The situation with RLS is "fluid" as they say, things are always changing. No one hid the results of augmentation, they were finding out along with us and did many 5 year and 7 yr studies.

[Hidden in reply to Hidden]

FYI any profit made from those books goes straight back into the RLS Foundation funds and not to the DRs who wrote themI find it an excellent website and the emails I have exchanged with the DR have been very helpful information wise.As has the information he has sent me for my own GP.All free of charge too.

[nightdancer in reply to Hidden]

Dr. Buchfuhrer is my RLS mentor, been speaking with him since 1996, he is the Medical Editor and one of the advisers for the Nightwalker's newsletter. So, he is not just "some guy" who made a web site and by the way he is one of the foremost researchers in RLS. Without him, I would have been lost as would have many others, way back when there was nothing on the internet besides his web site and the US RLS Foundation's and the yahoo email group that is still in the top 2% of all yahoo RLS support groups after all this time with people from 36 countries.

[nightdancer in reply to Hidden]

hmmmmmmm, I do not take any "forbidden" drugs. Not everyone on here is taking the wrong meds, just some. Depends on what they need that med for, too. Terraverde, where did you attend law school? I have a nephew studying law.

[Hidden in reply to nightdancer]

So I guess what you're saying is that you've stopped the mirtazapine and melatonin and are now much better.

[nightdancer in reply to Hidden]

Do you take notes? Good Grief! The Mirtazapine is the med that stopped my panic attacks when I was diagnosed with agorophobic panic disorder and could not leave the house for months. THAT was hell. There was one small study done on Mirtazapine/Remeron and RLS. It is the least of a few evils I had to choose from and now I can go out any time I want, and it does NOT affect my RLS. I also do still take melatonin which also does not seem to affect my RLS, since our brains make that naturally anyway, sometimes just not enough as we get older. Again, SOME people are affected by it, because it is thought to block dopamine, but it is my magic bullet for sleep. So, yes, I am still taking them, and NO, in MY case, they do not affect my RLS. have not had more than a twitch in a very long time. Thanks for bringing it up.

[Hidden in reply to Tiredparent]

Absolutely right Rosie, we are not doctors just RLS suffers who forward our RLS experiences and knowledge on to others. We are not sitting at a desk and waiting people to come into our room, sit down and then throw a load of questions at them. We havent got their medical history in front of us. We are first and foremost a support group.

[nightdancer in reply to Hidden]

EXACTLY. support being the key word here.

[nightdancer in reply to Tiredparent]

Exactly right, Rosie. We cannot diagnose anyone, especially something like depression. People have to remember we can only say what we do for ourselves and steer people in the right direction. We do not know people here, not even their real names and sometimes from what country? And, when we DO give a piece of advice remember that new people may not realize that everyone reacts differently to different treatments, and NO ONE way is the right way when it comes to RLS. And, for people handing out "advice", you can say what works for YOU, and make sure the new person knows how individual RLS treatments can be. We should not even recommend over the counter stuff, because some people may run right out an buy it, and as we know even over the counter stuff can wreak havoc. But, I dare say only a handful of people on here are QUALIFIED to do anything like that psychiatrist does. most of us have our own opinions, things that work for US, things that do NOT work for us, and so on. I hate to even call it "recommendations", maybe just suggestions as to how we treat our own RLS, and what our experiences are. But, I do not think anyone can "diagnose" whether a person is depressed or not, or anything else for that matter; we know nothing, or next to nothing, about the people in this group because it is all "anonymous". So, we do , as a group, need to remember the disclaimer, and that goes for ANY group.

[ookla]

I get what you're saying, but we are not psychiatrists or (other) doctors. There's a fine line between treatment center and support network. If we start routinely asking certain questions, we may give off the wrong appearance, create certain expectations, and inadvertently enter the scary realm of liability.

A lot of places have "current meds" listed at the bottom of their posts, like a signature line. It's been awhile since I registered, so I don't remember if we already have something like that, but if not, maybe that's something the site would be interested in implementing and users could choose to make that info available.

[Hidden in reply to ookla]

Why are you awake? I'm in the US and right now going a few rounds with the devil (aka RLS) via research. I love your idea about a signature line with the good, the bad and the ugly drugs attached thereto. Don't worry Ookla, if you somehow become liable, I'll defend you, I'm an attorney too.

[ookla in reply to Hidden]

Listening to anything I say comes with an implied assumption of the risk.

To answer your question, I was awake having a bad bout of rls and waiting for the oxycodone to kick in.

[Tiredparent Restless Leg Syndrome]

We have ambitious plans to improve the RLS UK website and it will no doubt include more information about drugs. Terraverde - I agree the website that you mentioned is not the easiest to navigate, especially on the first visit and all we can do is ensure that our RLS UK site is more intuitive to navigate.

[nightdancer in reply to Tiredparent]

This web site is easier to navigate, but this one is newer. That site was designed way back when. His site is still easier than other sites that have "members only" sections, though. I guess some of us are just so used to his site after all these years, but it's not hard to find the treatment page. Yes, we do a better designed site in many places, and so have great expectations for this one.

[Hidden]

As late as 2008, leader(s) in the field of RLS was/were treating augmentation on a case by case basis rather than putting in place a system wide program to PREVENT augmentation.

rls.org/Document.Doc?id=1488

By 2008, the writing was on the wall, it was going to happen to many many patients, yet nothing was done.

[nightdancer in reply to Hidden]

yes, and as we ALL know, things move slowly in these areas. Nothing can be done overnight.

[Hidden]

ncbi.nlm.nih.gov/pmc/ar...

This 2006 article talks about augmentation and tolerance. It goes on to state that augmentation was rearing its ugly head in 1996 and was very clear to doctors in the field of RLS exactly what was happening to their patients on the dopamine agonists. The leader(s) in the RLS field, who ignored this inconvenient fact, and continued to prescribe away, at ever higher doses, over the past decade or TWO, allowed drug companies (that produced Mirapex and the like) to reap billions of dollars in profit that they never would have otherwise. I'm not a conspiracy theorist, but it seems that this whole augmentation issue really didn't come to the forefront until the drug companies got other drugs for RLS approved by the FDA. Coincidence?

[nightdancer in reply to Hidden]

Clicked on link, "page does not exist" will find it on my own.

[Hidden]

Then an extended release form of mirapex came out

[Hidden in reply to Hidden]

I agree 100% with Nightdancer.. the drug companies keep track of the side effects. Watchdogs ensure that side effects are counted and published but only after a few to many years of study. Sad, isn't it? So many suffer consequences before it's side effects are declared.

[nightdancer]

That is insulting towards someone who has done nothing but work for people with RLS,. and offer up a lot of free help, plus run a practice, a huge support group plus the web site, do research , write books, which he makes no money off of. You may not agree with him about everything, but he is certainly way too busy to be called a simpleton. But, you are entitled to your opinion and how you look at things. Like I have always said the key word is "support".

[Hidden]

Omg, how rude are you.!! This shouldnt be allowed on here. You are referring to a doctor who cant defend himself on here. This is for Terraverde.!