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jagmort
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Considering CH attacks last fairly shortly
« on: Apr 5th, 2007, 5:01am »
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I was wondering if anyone had any physiological and whatnot tests done on him during the attack itself.  
If the results are anywhere on the boards could anyone point me to them?
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Yorky
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Re: Considering CH attacks last fairly shortly
« Reply #1 on: Apr 5th, 2007, 7:04am »
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last shortly
 
ARE YOU HAVING A FUCKING LAUGH ?
 
pet scan showa somat ?
mri shows nada ?
 
sorry jag.......welcome aboard  Wink
 
(just having a bad week )
« Last Edit: Apr 5th, 2007, 7:25am by Yorky » IP Logged

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Re: Considering CH attacks last fairly shortly
« Reply #2 on: Apr 5th, 2007, 7:16am »
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Hi jagmort.  Welcome to our little corner of the web.  Hows about you introduce yourself to the crew here.  Do you have clusters?  If so, what do you do to treat them?  Share a little about yourself.  What are your symptoms, what works, what doesn't - that kind of stuff.
 
I like how they describe CH as "short lasting."  I'm thinking the term "short" is subjective where CH is concerned.  One minute at the peak of an attack seems like an eternity.  Kind of like holding your hand 12 inches above a bic lighter flame for 30 seconds or holding your hand 12 inches above a cutting torch flame for 30 seconds.  Which seems shorter?  CH is the cutting torch.
 
I don't know if anyone here has had this done, but Positron Emission Tomography (PET imaging) does show activity in the hypothalamus on the pain side during cluster attacks.  
 
Here are some articles that talk about PET imaging and clusters:
 
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?itool=abstractplus&db= pubmed&cmd=Retrieve&dopt=abstractplus&list_uids=9690407
 
http://www.ouch-us.org/chgeneral/hypothalamus/hypothalamus2.htm
 
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?itool=abstractplus&db= pubmed&cmd=Retrieve&dopt=abstractplus&list_uids=11252139
 
http://www.achenet.org/articles/17.php
 
http://bmb.oxfordjournals.org/cgi/content/abstract/65/1/223
 
Somehow, being strapped down and immobilized to the point where the docs can get a good picture during an attack doesn't sound like much fun.  Kudos to those who have done it.
 
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Re: Considering CH attacks last fairly shortly
« Reply #3 on: Apr 5th, 2007, 7:31am »
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on Apr 5th, 2007, 7:16am, Gator wrote:
Somehow, being strapped down and immobilized to the point where the docs can get a good picture during an attack doesn't sound like much fun.  

 
Nope!  Ain't gonna happen to me, not the way I thrash, head bang, pull hair, while I am getting hit!
 
 
on Apr 5th, 2007, 7:16am, Gator wrote:
Kudos to those who have done it.

Ditto THAT!!!
 
Chuck
 
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jagmort
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Re: Considering CH attacks last fairly shortly
« Reply #4 on: Apr 5th, 2007, 7:43am »
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Thanks for the links.  
 
Well, I am a chronic male headbanger. Been dancing for around 11 years since I was 19. Luckily my attacks never exceed kip 8 and extremely rarely last up to two hours. 60-75 minutes is my average dance.  
I usually do not get more than 3 attacks per week. Mostly at night and, I think, during REM transition. Never been painfree for more than two weeks. At least I do not recall that.  
So, I gather, I am better off than the periodical headbangers. I can not even begin to imagine having several attacks per day every day for several weeks. And definitely better off than most of the chronic ones.  
 
To be honest, I never done any special medication. Coffee, and trying to hyperventilate myself my reduce attack time (or not).
If I can catch shadows getting thicker, I use ketorolac trometamine, which is a simple postsurgery anaesthetic, though a fairly potent one and, in case the attack does not happen, I salute myself with making a right choice.  
That's about it.  
Tearing eyes, running nose and toothache is the bread and butter of CH.  
The only palpable difference is that my pain concentrates in the temple area.  
The story is hardly unique though.
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Re: Considering CH attacks last fairly shortly
« Reply #5 on: Apr 5th, 2007, 8:14am »
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Well....there was this one time that they wanted to do a CT scan....its all kinda blurry I think it was because of an unrelated sinus infection they wanted to check out or something?  But read somewhere here that if you do a CT scan during a hit or around a hit, it will be al congested (um duh) and that's what it looked like.
It was the worst experience ever though...still gives me chills to think about it.  I had been getting lots of hits and had fallen asleep and thats when they put me in the scanner and as I was going in I woke up with another one and I tried to get up but I was strapped down and it was just awful...like something you'd see in a horror story...or one of those 19th century medical books or something!  
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Re: Considering CH attacks last fairly shortly
« Reply #6 on: Apr 6th, 2007, 11:22am »
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i would feel sorry for anyone who trying to strap me down during a hit thay would loose teeth thats for sure
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Re: Considering CH attacks last fairly shortly
« Reply #7 on: Apr 6th, 2007, 2:26pm »
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I had a MRI done while having and attack, the neuro wanted to see how my brain was reacting to the pain, luckily it was not that strong maybe a K7, then a week later they did a electro in my head too while having one but this one was a hard one, they had to stop the test since I could not stay still in the bed..after that I told the neuro I will not endure another hit without taking something for it..10 years later I had to endure a nasty K10 while in labor and I had to handle it with only O2 because they did not want to give me anything because of the baby, I could not move because they have all the cables hook up on me, man, that was bad.
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Re: Considering CH attacks last fairly shortly
« Reply #8 on: Apr 6th, 2007, 2:29pm »
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About 5 minutes into having an MRI I started getting hit.  Towards the end it got really bad, face all wet & snotty, eye swollen, you get the picture.  I told the tech to get me out of this bleeping machine now, but she said you only have 5 more minutes, just tough it out so you do not have to go through the process again.  It wasn't easy and somehow I breathed my way through it.
 
When she pulled me out of the machine, the look on her face was pure shock.  She took me to an (almost) empty waiting room so I wouldn't tramatize the family that was in the MRI waiting room.  Nurses kept asking me if I wanted to lay down in a dark room, I kept telling them no I was having a cluster headache.  They did not get it.  There was an older lady in the room with me who asked if there was anything she could do for me.  I told her no, I was having a cluster headache.  She said ohh I understand and let me contine to rock squeeze my head and cry.
 
This was the worst, most public attack I have ever had.  Afterwards, I realized that my clueless gp ("they only last 1 1/2 hours, thats not so bad"Wink was on the same floor and if I was capable of thinking I should have walked into his office and insisted on him seeing me full clusterattack mode.  I probally would have been arrested.  
 
Oh, the MRI showed nothing because it wasn't focased anywhere near the hypothalmous.  Clueless gp wanted to take a closer look at some cyst that apparantly so many people have it's more common than not.  The reason I suffered through the MRI was for nothing.  I'm getting pissed just writing this!
 
Beth
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Re: Considering CH attacks last fairly shortly
« Reply #9 on: Apr 6th, 2007, 6:31pm »
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Welcome abord, learn what you can and stick around, hope you find some relief or support.
 
Regarding CH attacks lasting fairly short -   While an hour normally goes by quickly a CH attack makes it feel like forever.  Long, brutal attacks often have me praying the good lord sees fit to end my existance so that it can stop.  Just giving you a perspective.  
 
I don't belive that I could participate in testing or remain still when experiencing an attacks over a KIP 4.  But even with lower level attacks - I don't sit still must pace the floor so I'm not sure testing during an attack is possible.
 
Tom
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Re: Considering CH attacks last fairly shortly
« Reply #10 on: Apr 7th, 2007, 11:42pm »
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Hi Jagmort,
 
Glad you are here!
 
there is no way I could go into a Cat scan or an MRI while under attack.  If they could restrain me enough to get me into the machine it would be a waste of time as I could not stay still enough for them to get a picture.
 
Jerry
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