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Has anyone heard of this? (Read 1078 times)

PJJM68

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Has anyone heard of this?
Sep 7^th, 2009 at 9:42am

I have been diagnosed with CH and have suffered with them for 6 years now, always on the left, until this episode, it started on the right and seems to be worse than those on the left.What worries me is that at the peak of the attack, my right leg starts to jerk around and i cannot stop it, this happens each time that the pain reaches its peak, you know how they work, come and go in waves of absolute pain and terror. I have only suffered from three this episode so far and already I do not want to sleep anymore as they only occur exactly 1 hour after I sleep. My question really is: has anyone ever had this "thing" happen to their leg on the same side as the pain in the head? Thanks for all your support.

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George

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Re: Has anyone heard of this?
Reply #1 - Sep 7^th, 2009 at 11:17am

Very familiar.

Not absolutely certain, but I believe this leg-bouncing behavior is pretty common. I know it happens to me, at least.

If you search "cluster headache" on youtube and watch some of the videos of attacks in progress (very difficult to watch, btw) you'll see the leg movements as well.

I don't have an explanation for it, however.

Best,

George

"Whoever loveth me, loveth my hound." (Thomas More, author of "Utopia", and Chancellor of England. 1477-1535)

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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: Has anyone heard of this? Reply #2 - Sep 7^th, 2009 at 11:45am Them's called happy feets. Potter
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JustNotRight CH.com Sponsor Offline CH version 15.0.8 member since 2005 aka GingerS224 Posts: 1300 Wilkes-Barre, Pa (USA) Gender:	Re: Has anyone heard of this? Reply #3 - Sep 7^th, 2009 at 3:35pm Mine get jittery too, But then so does the rest of me. Potter wrote on Sep 7^th, 2009 at 11:45am: Them's called happy feets. Potter Glad to know some part of me is happy during a hit
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Barry_T_Coles

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Re: Has anyone heard of this?
Reply #4 - Sep 7^th, 2009 at 7:00pm

HI Osh Welcome to the nut hut, your in good company.

The shaky leg thing is Restless Leg Syndrome, some times referred to as Restless limb syndrome.

My Nuro first prescribed Antidepressants to settle it down as I had it in the leg arm & torso along my left side but they didn't work; I've had better results using Magnesium/Calcium supplements, it took me about 3 months before it settled down enough not to wake me up when it came on.

Running 150 KM a night on 1 leg ain't a lot of fun Cheesy

Here's a link for you.
Cheers
Barry

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Of all the things i've lost in life the thing i miss most is my mind.

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BarbaraD

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Re: Has anyone heard of this?
Reply #5 - Sep 9^th, 2009 at 9:10am

Yep, it happens - Chuck shakes all over (it's not a pleasant thing to watch, but he let himself be filmed during an attack).

Before you go to bed, you might try taking some melatonin (9-15mg). It helps a lot of us avoid night hits. It gets you thru the REM sleep (about 1 hour to 90 minutes after you fall asleep) where the CH hits. It may take a while to get in your system so if it doesn't work the first night don't give up on it. Took about a week or so for it to start working on me, but I've been on it for years and very seldom have a night hit.

Also during the day, you might try taking Calicum citrate tabs with magnesium, and zinc (they come with Vit D also). Take about three of these big boys a few times during the day (YUCK!). Pete told me to do this and it's actually helping. Don't have a clue why, but it is.

Hope things get better for you soon. We all wish you a short cycle and some PF time....

Hugs BD Kiss

What don't kill ya, Makes ya stronger!

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JustNotRight

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Re: Has anyone heard of this?
Reply #6 - Sep 9^th, 2009 at 9:24pm

I use Scullcap for the RLS issue...Damn it was annoying before I started on the Scullcap,
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my dog almost bit me a few times due to the RLS. Grin

The normal dosage is 3 capsules per day. I take 2 about an hour before bed helps with my RLS issues.

« Last Edit: Sep 9^th, 2009 at 9:27pm by JustNotRight »

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