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Cluster Tic Syndrome (Read 2230 times)
MITYRARE
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Cluster Tic Syndrome
Sep 24th, 2008 at 4:39pm
 
I suffer severe Cluster Tic Syndrome in the form of shooting "fireworks" type pain which is unpredictable and the most disconcerting part of my whole cluster experience ( 30 years now).
For my tic, I experience piercing pains that come into the head from various angles and you never know from where. Many come over the course of a half an hour causing you to physically try and move to avoid them as they "attack" like long pins being pushed thru the brain at various angles at lightning speed. The tic would then be followed by a classic cluster headache.
For years I had a great neuro who researched this rare phenomenon that affects only some cluster sufferers, but sadly this neuro passed away recently.
Are there any others here that expeience Cluster Tic Syndrome and how does it manifest itself with you?
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« Last Edit: Sep 24th, 2008 at 4:40pm by MITYRARE »  

Paul
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Re: Cluster Tic Syndrome
Reply #1 - Sep 24th, 2008 at 8:48pm
 
no i havent but it doesnt sound like anything i want either. Cool
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Brew
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Re: Cluster Tic Syndrome
Reply #2 - Sep 24th, 2008 at 9:17pm
 
Nope, never heard of it. Which means absolutely nothing.
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CH-HELL
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Re: Cluster Tic Syndrome
Reply #3 - Sep 24th, 2008 at 10:05pm
 
Never heard of it,  but I do get flashes of intense pian kind like an eletric shock with my shadows, these episodes only last a few seconds.  Is this a cluster tic I dont know.  I just call it shadow/phantom haedaches.            Phil
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on my knees
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Re: Cluster Tic Syndrome
Reply #4 - Sep 24th, 2008 at 10:09pm
 
i just say it hurts .  Shocked huh phil
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CH-HELL
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Re: Cluster Tic Syndrome
Reply #5 - Sep 24th, 2008 at 10:14pm
 
Your right on It alway hurts no matter what you call
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MJ
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Re: Cluster Tic Syndrome
Reply #6 - Sep 25th, 2008 at 10:56pm
 
MITYRARE wrote on Sep 24th, 2008 at 4:39pm:
Are there any others here that expeience Cluster Tic Syndrome and how does it manifest itself with you?


Yes I also suffered with these for over 30 years. They were at the least very similar.

For me they were very random though occuring many times a day  and did not foretell an attack. In fact they were most notable outside of a full on cycle.

Again for me they allmost allways occurred in the temple area same as the CH

I call them my bullet attacks as that is how they felt. Just as though I had been shot and the pain passed as quickly as a bullet. On occasion I felt I could here a snap in my head.
There were times the intensity could knock me to my knees.
Immediately following the whole side of my face would turn completely white for a short period and feel very flushed, within a minute all I could say was what the hell was that.

There has been similar mention of these here before by others.

Interesting to note that along with CH and silent attacks they have greatly diminished since treating with CB methods.
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MJ
 
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Jeannie
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Re: Cluster Tic Syndrome
Reply #7 - Sep 26th, 2008 at 1:50pm
 
I can't remember who, but I think that it may have been Barb, refers to this as "ice pick pains".  I get them too... even between cycles.  In fact, it seems that I have a lot of symptoms, as I get older, that make me aware of my CH  between cycles.

Sorry for your pain and I hope you are pf soon!

Jeannie
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"It's all a grand illusion when you think you're in control." ~ Kenny Chesney
 
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midwestbeth
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Re: Cluster Tic Syndrome
Reply #8 - Sep 29th, 2008 at 10:37am
 
I have had these in the past and always refered to them as ice pick headaches.  I would feel a sharp "ice pick" stabbing pain in my temple that would last about a second or so.  Haven't had any in over a year and I never connected them to ch because I've had the ice pick headaches long before ch showed up.

Beth
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