Restless Legs Syndrome (RLS) Discussion Board

I will throw a bit of a complication into your hypothesis using my own history. For many years I had what I would describe as mild WED. It was only a problem when I was on long airplane flights, of which I had many. I did not really notice a progression of the disease over the years, but I think th...

Hi again, not sure if I'll have a top 10 of WED questions soon, but I seem to be well underway One thing that has always bothered me is the relationship between "augmentation" and "natural disease progression". I can't explain exactly why, but I feel uneasy about the distinction ...

Hi again, question #5 is: Is there a pattern in the environmental triggers (food, activities, climate, stress) that we have? (I'd like to pick up the discussion from http://bb.rls.org/viewtopic.php?f=5&t=8928 .) Numerous patients report on certain things that triggers their WED. We do have a lis...

I think there are likely many factors that set off WED when it's mild or moderate. When mine was in that category, I could go weeks without it. But, certain things caused it every time. One was going to bed too late - it disrupted chemicals in my brain, is my guess. I wasn't very long in that categ...

My guess is that there are unknown mechanisms and I do not know how we'd find them. For example, could you study all the different types of likely hormone and chemical levels in my body each time I had WED and compare to when I didn't have i? How could you do that? Something is clearly different......

Hi again, I have another question that falls in the "heck, this is puzzling" category, and where I haven't found even a single attempt to give a satisfactory answer. Why are our symptoms so erratic? Why is it that the symtoms get worse and better, or change in type, for some days or weeks ...

I do online questionnaires for work sometimes. There are free tools we can use. The person you know likely knows of them, too. It's not hard and the free tools allow you to do most basic stuff (and some more complex stuff). Well, I guess there are free tools and commercial tools, the commercial one...

And, what about primary/ideopathic vs secondary? Is it important for this data to identify if the person knows of A) relatives with the disease, or has, B) conditions that are associated with the disease, and, C) when the symptoms started in relation to the other conditions? I do think we should as...

We need to get really basic first. I honestly am not sure we understand some of these basic things. I wonder if we could get a small grant from the Foundation to pay for a website and instruments with which to capture and assess data? Or maybe we're ready to form our own non-profit . My thoughts ex...

Long ago - maybe 5-8 years? - I remember one of the research doctors saying that it seemed people who had painful WED responded to the alpha 2 delta ligands much better than those who felt their sensations as electrical, crawling, creeping. IIRC, that was even in print somewhere (a search here migh...

The researchers at Johns Hopkins are currently looking at the role of excess glutamate in the brains of WED patients and believe that this may be the reason why so many who are treated with DAs still have issues with insomnia. This study also looked at the effective use of gabapentin in treating in...

Hi again, my next question is: Why do alpha-2-delta ligands (Gabapentin/Horizont, Lyrica/Pregabalin) work well for some WED cases? What kind of patients respond to these drugs? It seems to me that these drugs are only effective for light or medium severe cases. I've never heard that a bad case of WE...

Hi again, this may not be a question at all, but more a suggestion for a research project - maybe triggered by the WED foundation? I always wondered if there exists idiopathic WED at all, or if all WED comes from another disease or nutritional issues. We know that low iron, magnesium and vitamin B12...

In the short term it may help to add a smaller dose of Mirapex if withdrawal symptoms persist. This may prolong the overall withdrawal phase, but with a wedding coming up you might want to take the relief now and handle the withdrawal later...

Dr B responded to me. He said that he knows of no research related to RLS/WED and DAWS. Which is what I found when I searched. Because of that, no one knows about dosage. He did say that he has rarely seen it, however, and routinely (as typified by his responses on rlshelp.org) tells WED patients t...