Hi Les & welcome
I dealt with RLS for about 18 months when I changed from episodic CH to chronic; I also dealt with E.H.S. Exploding Head Syndrome, Insomnia & P.L.M.D., Periodic Limb Movement Disorder.
It’s interesting the way the symptoms for RLS are described by sufferers, ranging from itching or tickling as Sara has said to shaking rattling & kicking out; I describe it as like when you are really cold & shivering to the point of rattling, also I think we have to allow for the way people from other countries describe the effects as in say the US “I say tomatoe you sat tomato” and so on the translation doesn’t come across.
My Nuro described extreme cases like me as Restless Limb Movement in that it affected the entire left side of me so that not only the leg but foot, arm & at times the rib cage would rattle & make Chubby Checker look like he was standing still.
I should note that the Nuro I was under (Sasson Gubbay) was no goose, apart from his practice he was the Clinical Professor of Neurology at the Uni of WA he also worked in Royal Perth Hospital & Princess Margaret Hospital for Children.
Like Clusters there is not enough known about this symptom (note I say symptom) as I am a firm believer in the hypothalamus being the centre of a lot if not the most of these malady’s, when you search through the info available the results will always refer to the thought or suspicion that the hypothalamus has some involvement or the gland not doing it’s job is controlled from the hypothalamus.
You will see that Sara has mentioned that magnesium supplementation can play a part in managing CH; it wasn’t until I started on Magnesium supplements that the RLS & EHS gradually subsided & eventually went away.
Prior to the supplements I found the best way of dealing with the RLS was to let it run its course for the night & not try to fight it, it seemed in my opinion that it stopped quicker that way.
The Insomnia & PLMD are here to stay by the looks as after 7 years there has been no change even with the supplements; but I must say that I have had some very good lengthy remission periods from CH over that time, the best being 2.5 years & I have only had one EHS wack & that was 2 weeks ago & scared the living sheite out of me.
The weird thing with PLMD is that for me it only occurs in the early hours of the morning, usually after around 2am & will continue until I get out of bed, I haven’t had a night in these last 7 years without this occurring.
As Ned Kelly would say "Such is Life".
Cheers
Barry