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restles leg syndrome

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Les Norton

(Member)
From: steve irwin way, beerburrum
1 total posts
Not currently suffering :D
when i signed up the last question asked if i have ever suffered 'restless leg syndrome'. Can anyone tell me what the connection is between CH and RLS? I have had CH almost 17 years and RLS as long as i can remember and never thought the 2 were related
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Ex-member

(deleted-member)
From: unknown
130 total posts
Not currently suffering :D
Hi Les these site might help you find your answers to your question ALL THE BEST from Les http://healing.about.com/od/therapies/a/triggerpoint.htm

http://www.tmj-therapy.com/RLS%20and%20PLM.html

http://www.ourhealthnetwork.com/conditions/FootandAnkle/ShortLegSyn
drome.asp
This post was edited on 08/12/2011 at 8:37 pm
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Ex-member

(deleted-member)
From: unknown
130 total posts
Not currently suffering :D
Look like you will have to copy the other ones
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grannysa

(Member)
From: Dalby
158 total posts
Not currently suffering :D
Hi Les and welcome to the site.

Re yr question on a CH and RLS, it seems that the latest research is actually disputing a link

http://www.ncbi.nlm.nih.gov/pubmed/21255910

http://headachedrugs.com/column/potential-link-between-cluster-head
aches-and-restless-legs-syndrome/


The wiki site was also an interesting read. I always believed that RLS referred to those annoying involuntary leg movements just as you were falling asleep, a bit like kicking out at something - however this seems to be a misconception, as the condition is described as "an itching or tickling in the limbs".

http://en.wikipedia.org/wiki/Restless_legs_syndrome

I also found a number of references to RLS and magnesium deficiency, which is interesting because there is some anecdotal evidence that magnesium supplementation can play a part in managing CH

http://www.umm.edu/altmed/articles/magnesium-000313.htm

In a nutshell Les, it seems to be another one of those issues where a search for answers only provides more questions...

Cheers
Sara
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Barry T Coles

(Member)
From: Karratha
217 total posts
Not currently suffering :D
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.

Itís 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 ďI say tomatoe you sat tomatoĒ and so on the translation doesnít 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 maladyís, 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 itís job is controlled from the hypothalamus.

You will see that Sara has mentioned that magnesium supplementation can play a part in managing CH; it wasnít 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 havenít had a night in these last 7 years without this occurring.
As Ned Kelly would say "Such is Life".

Cheers
Barry
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saintpeter

(Member)
From:
610 total posts
Not currently suffering :D
What's EHS Barry? Is that like a gun has gone off inside your brain, with a flash and a bang- almost like a huge electric shock? If so, i'm familiar with it. Almost always at the point of falling asleep.
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Barry T Coles

(Member)
From: Karratha
217 total posts
Not currently suffering :D
saintpeter said:
"What's EHS Barry? Is that like a gun has gone off inside your brain, with a flash and a bang- almost like a huge electric shock? If so, i'm familiar with it. Almost always at the point of falling asleep."


Hi Peter

You are the only other person I know who has experienced this although it does come up in other CH sites.

Almost like a huge electric shock is probably the closest & best description of it & itís over & done with in a split second, as you say always before going to sleep but I have on occasions had them wake me up just after going to sleep but probably not after an hour of sleep.

Did/do yours vary in intensity as with CH; I have had them from ouch that hurt to unmentionable verbal descriptions, with the biggest throwing me bodily across the bed much to the astonishment of my wife.

When I got 3-4 biggies in a night the next day my head on that side would feel like it was bruised inside & was very tender to touch for 4-5 days later.

Cheers
BarryThis post was edited on 05/12/2011 at 5:40 pm
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Shell

(Member)
From: Echuca
123 total posts
Currently suffering :(
Hi Barry,

Cory also experiences this sensation, thanks for finally giving us its name!
With all the hundreds of doctors that have seen him over the years its something that they have all missed.

With the RLS as well occassionally I think hes trying to kick me out of the bed, this aspect only occurs just after he falls asleep.

Maybe its time for all of to get together at a conference!

Regards ShellThis post was edited on 08/12/2011 at 8:55 pm
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Shell

(Member)
From: Echuca
123 total posts
Currently suffering :(
Hi Guys,

This is an abstract from Sara's post:


Potential Link Between Cluster Headaches and Restless Legs Syndrome

June 28, 2011 | Author Dr Robbins




In a recent study by DíOnofrio et al. it was found that none of those participating in the study who had cluster headaches experienced Restless Legs Syndrome. Restless Legs Syndrome is one of the most common neurological conditions and movement disorders; it is characterized by unpleasant sensations inside the legs, mainly at times of rest such as bedtime, which result in an irresistible need to move the limbs in order to stop these sensations. Brain imaging studies have suggested that Restless Legs Syndrome may be generated by dopamine dysfunction and alterations to melatonin secretion locally within the central nervous system. It is because both cluster headaches and Restless Legs Syndrome are characterized by alterations in melatonin secretion and frequent nocturnal onset, that a possible pathogenetic and clinical connection between the two conditions was drawn. The study found a 0% prevalence rate of Restless Legs Syndrome in patients with cluster headaches, as opposed to a 12% prevalence rate in the patients in the control group who did not experience cluster headaches. The group conjectured that reduced nocturnal melatonin in cluster headache patients likely results in sustained dopaminergic activity which could be a protective factor against the development of Restless Legs Syndrome. It was concluded that further investigation of the role of melatonin in both cluster headaches and Restless Legs Syndrome is needed and could potentially produce interesting results.

This information seems to go against all of our information, not sure on the current statistics (about 27%) of sufferers share both CH and RLS. Interesting, I wonder where this study was done and if that has any relation to its results.

Regards Shell iconiconicon
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grannysa

(Member)
From: Dalby
158 total posts
Not currently suffering :D
Hi guys
The leg kicking at night could be periodic leg movement disorder. I suffer from this from time to time. It is apparantly related to circadian rhythm disorder. Have a look at this wiki entry for sleep disorders and it is listed there.

http://en.wikipedia.org/wiki/Sleep_disorder

Cheers
Sara
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