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Bob_Johnson
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Complexity increases!
« on: Dec 29th, 2005, 9:40am »
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The significance of this report is not clear--except as a warning that we are dealing with a disorder which is not well understood and likely more complex than we would like to believe. Bottom line: patience and a willingness to explore is crucial to survival!
---------------------
J Headache Pain. 2005 Jun;6(3):149-51. Epub 2005 May 13.    
 
 
Non-hypothalamic cluster headache: the role of the greater occipital nerve in cluster headache pathogenesis.
 
Rozen TD.
 
Michigan Head-Pain and Neurological Institute, 3120 Professional Drive, Ann Arbor, MI 48104, USA, trozen@mhni.com.
 
Cluster headache is marked by its circadian rhythmicity and the hypothalamus appears to have a significant influence over cluster pathogenesis. However, as not all cluster patients present in the same manner and not all respond to the same combination of medications, there is likely a nonhypothalamic form of cluster headache. A patient is presented who began to develop cluster headaches after receiving bilateral greater occipital nerve (GON) blockade. His headaches fit the IHS criteria for cluster headache but had some irregularities including frequent side shifting of pain, irregular duration and time of onset and the ability of the patient to sit completely still during a headache without any sense of agitation. This article will suggest that some forms of cluster headache are not primarily hypothalamic influenced and that the GON may play a significant role in cluster pathogenesis in some individuals.
 
PMID: 16355296
« Last Edit: Dec 29th, 2005, 9:41am by Bob_Johnson » IP Logged

Bob Johnson
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Re: Complexity increases!
« Reply #1 on: Dec 29th, 2005, 10:13am »
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Oh boy!
 
gotta throw another wrench into things huh.
 
Good find Bob!!!
 
E
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Re: Complexity increases!
« Reply #2 on: Dec 29th, 2005, 10:18am »
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I swear this malady is of the male gender.  Just about the time we all think we've got a handle on it - the damn thing throws us a curve ball.
 
C'mon girls - doesn't that sound "just like a man" LOL!
 
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Re: Complexity increases!
« Reply #3 on: Dec 29th, 2005, 9:06pm »
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Sounds more like a woman to me.   Tongue
 
Anyways, I would like to know why he had the nerve block in the first place.  I wonder if the doc that performed the block nicked or otherwise damaged the nerve.  Seems unlikely to get a direct hit like that on both sides of the same person, but I suppose it could happen.
 
 
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Re: Complexity increases!
« Reply #4 on: Dec 29th, 2005, 9:13pm »
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Quote:
Sounds more like a woman to me.

 
Now Mike - you now that's just not true.  We gals always mean what we say and say what we mean and we never, ever (well, almost never, ever) change our minds or our game plan. Grin
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Re: Complexity increases!
« Reply #5 on: Dec 29th, 2005, 9:51pm »
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on Dec 29th, 2005, 9:06pm, Gator wrote:
Anyways, I would like to know why he had the nerve block in the first place.  I wonder if the doc that performed the block nicked or otherwise damaged the nerve.  Seems unlikely to get a direct hit like that on both sides of the same person, but I suppose it could happen.

 
I don't know but I'm glad its not me Grin One side at a time please Grin
 
Sean...................................
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Re: Complexity increases!
« Reply #6 on: Dec 29th, 2005, 9:57pm »
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on Dec 29th, 2005, 9:40am, Bob_Johnson wrote:
and the ability of the patient to sit completely still during a headache without any sense of agitation.
 
 
Was this patient feeling any discomfort at all???
 
Was this patient having phantom clusters maybe??
 
How many people were in this study?
 
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« Last Edit: Dec 29th, 2005, 11:36pm by Sean_C » IP Logged
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Re: Complexity increases!
« Reply #7 on: Dec 29th, 2005, 10:02pm »
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The human mind is a strange complex organ, lots of signal both electrical and chemical going on in there. I wonder how many generations will pass before they unlock its secrets.
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Re: Complexity increases!
« Reply #8 on: Dec 29th, 2005, 10:26pm »
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I always liked the guy who said the research going into cluster headaches is like 10 guys with blindfolds describing an elephant. I try to be optimistic but it may take a few more years till someone figures this stuff out
 
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Re: Complexity increases!
« Reply #9 on: Dec 29th, 2005, 10:44pm »
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on Dec 29th, 2005, 9:40am, Doc Rosen wrote:
His headaches fit the IHS criteria for cluster headache but had some irregularities

Cheesus. Criteria. Irregularities. For all the hoopla about getting a correct diagnosis, this whole thing is a Major Crap Shoot. Totally subjective. Until they come up with a blood test, or CH-O-Gram, I'll have No Problem with self diagnosis, or deciding which treatment protocols I feel like following, thank you very much.
A Clustermasx can make ya feel a little cocky, sometimes.
 
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Re: Complexity increases!
« Reply #10 on: Dec 29th, 2005, 10:59pm »
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Clusterbusters can make others of us feel like we finally got a foot ahead of the beast....
 
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Re: Complexity increases!
« Reply #11 on: Dec 29th, 2005, 11:43pm »
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on Dec 29th, 2005, 9:40am, Bob_Johnson wrote:
The significance of this report is not clear--except as a warning that we are dealing with a disorder which is not well understood

 
Hopefully someday that will be something of the past.
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Re: Complexity increases!
« Reply #12 on: Dec 30th, 2005, 8:32am »
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Bob's find suggests in a way that maybe their are people with this problem that don't present with what some people may feel is the typical symtomatolgy.
 
Like Sean and Tom who questioned whether I have CH.
 
Comments like you don't have CH and F--k off Burt and that kind of stuff.
 
You know it's not real nice to bash a guy who comes to a site for help. That wasn't the help I needed.
 
If I wanted that sort of advice I wolud have asked my wife lolololol.
 
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Re: Complexity increases!
« Reply #13 on: Dec 30th, 2005, 9:21am »
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on Dec 30th, 2005, 8:32am, cardogman wrote:
Bob's find suggests in a way that maybe their are people with this problem that don't present with what some people may feel is the typical symtomatolgy.

Like Sean and Tom who questioned whether I have CH.
 
Comments like you don't have CH and F--k off Burt and that kind of stuff.
 
You know it's not real nice to bash a guy who comes to a site for help. That wasn't the help I needed.
 
If I wanted that sort of advice I wolud have asked my wife lolololol.

Burt

There, fixed it for you.  
 
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Re: Complexity increases!
« Reply #14 on: Dec 30th, 2005, 9:56am »
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Ok, maybe I'm just dense (or old), but I think I'm missing something here. Someone had an optical nerve block and developed non-hypothaphical (msp) CH? And they can sit still while having them and they can hit either side? CH? So what the hell are the rest of us having?
 
What am I missing?  
 
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Re: Complexity increases!
« Reply #15 on: Dec 30th, 2005, 10:39am »
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on Dec 30th, 2005, 9:56am, BarbaraD wrote:
So what the hell are the rest of us having?

Tea and crumpets with the aliens Barb....DUH! Grin
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Re: Complexity increases!
« Reply #16 on: Dec 30th, 2005, 10:48am »
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I'll reserve opinion till this "observation" involves more than 1 patient, and there are more than a single published report.
 
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Re: Complexity increases!
« Reply #17 on: Dec 30th, 2005, 11:11am »
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The last sentence in the abstract is the key: Dr. Rozen is speculating that this nerve may be involved--just a guess on his part at this stage.
 
Re. agitation: I've always found that agitation/walking about, etc. increases my pain. The best thing I can do (apart from meds) is to sit in a neutral posture, muscles relaxed, in a dark room, and NOT move. With slow breathing, all these moves ease the cluster pain.  
 
There isn't one set of symptoms for everyone--right?
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Re: Complexity increases!
« Reply #18 on: Dec 30th, 2005, 11:19am »
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on Dec 29th, 2005, 9:40am, Bob_Johnson wrote:
The significance of this report is not clear--except as a warning that we are dealing with a disorder which is not well understood and likely more complex than we would like to believe. Bottom line: patience and a willingness to explore is crucial to survival!
---------------------
J Headache Pain. 2005 Jun;6(3):149-51. Epub 2005 May 13.    
 
 
Non-hypothalamic cluster headache: the role of the greater occipital nerve in cluster headache pathogenesis.
 
Rozen TD.
 
Michigan Head-Pain and Neurological Institute, 3120 Professional Drive, Ann Arbor, MI 48104, USA, trozen@mhni.com.
 
Cluster headache is marked by its circadian rhythmicity and the hypothalamus appears to have a significant influence over cluster pathogenesis. However, as not all cluster patients present in the same manner and not all respond to the same combination of medications, there is likely a nonhypothalamic form of cluster headache. A patient is presented who began to develop cluster headaches after receiving bilateral greater occipital nerve (GON) blockade. His headaches fit the IHS criteria for cluster headache but had some irregularities including frequent side shifting of pain, irregular duration and time of onset and the ability of the patient to sit completely still during a headache without any sense of agitation. This article will suggest that some forms of cluster headache are not primarily hypothalamic influenced and that the GON may play a significant role in cluster pathogenesis in some individuals.
 
PMID: 16355296

 
 
The report fails to address the potential ability of CH to also adapt around meds. used for treatment.  I think this may have some significance to a study determining if/how patients react to certain treatments and if there are multiple CH types.  
 
I've experienced CH adapting to treatments myself and I'm on meds. 24 X 7 X 365.  I also recall reading numerous posts about how a treatment that was so effective one time was of absolutely no value the next or visa versa.  
 
As previously posted I'm currently working with my Neuro. on a test.  As-soon-as my symptoms start to change (increased frequency/severity) I immediately throw something new at this nightmare (increased dosage/off the shelf stuff/prescription med.)  Surprisingly my CH hasn't gone into the usual fall/early winter overdrive that I've come to expect.  Only time will tell as we get into full winter/spring, but so far the results are interesting.  
 
Just look at the total number of meds. that can be  prescribed for CH - sometimes seems like a bad fishing trip where ya' keep throwing everything in the box until some obscure lure catches one.  Then everyone switches to it only to find that only that one fish was interested.  
 
Seems the medical community treats this little known condition with a whole lot of meds. that were actually developed for other conditions.  I'm not sure we can  expect consistent results given these circumstances, let alone say that this appears to indicate there could be multiple flavors of CH.  
 
 
Tom    
 
 
 
 
 
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Re: Complexity increases!
« Reply #19 on: Dec 30th, 2005, 11:22am »
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on Dec 30th, 2005, 11:11am, Bob_Johnson wrote:
Re. agitation: I've always found that agitation/walking about, etc. increases my pain. The best thing I can do (apart from meds) is to sit in a neutral posture, muscles relaxed, in a dark room, and NOT move. With slow breathing, all these moves ease the cluster pain.  
 
There isn't one set of symptoms for everyone--right?

I used to pace and rock and hit my head with my fist last cycle.  Now, I can barely handle moving my head from side to side without pain shooting through worse than if I keep it still as I can while "rubbing it out" with my fingertips.  If I let my anxiety skyrocket while getting hit, I'm in a LOT of trouble, so I try and do my deep breathing exercises I learned as an anxiety disorder coping skill.
 
Even after a hit, when it's winding down and I've run all the hot water out of the heater, I find it best to lay on my bed with an ice pack on the back of my neck, doing my deep breathing exercises with a cool wet head and bundled up from the neck down underneath a warm comforter.  And if it STILL won't go away, I'll hit it with some O2 (in case I didn't get to it to begin with) and that'll take a lot of the edge off.
 
(whew!)
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Re: Complexity increases!
« Reply #20 on: Dec 30th, 2005, 10:12pm »
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on Dec 30th, 2005, 11:11am, Bob_Johnson wrote:
The last sentence in the abstract is the key: Dr. Rozen is speculating that this nerve may be involved--just a guess on his part at this stage.

 
I too find it difficult to agree with a concluding word "significant" when he has previously said:
 
Quote:
there is likely...
 
a patient...  (1)
 
His headaches fit the IHS criteria for cluster headache but had some irregularities...  
 
This article will suggest...

 
Some here have already mentioned these points, and Dr. Rozen's saying  "likely" and "will suggest" is perhaps stronger language than appropriate when used also with all the "irregularities" listed.  "Significant" is attached to "some forms" and "some individuals";  again, "some" is, as Bob said, speculation, 'significant" seems strong too.  It's an idea, research for us is being done, which is good.  
  The patient's headaches fit the criteria, but how many have developed clusters after receiving this blockage operation?  Have similar symptoms been noted before from this?  I'd have included that also.  
  This may be sceptically out of line but there is sometimes pressure to publish.  I hope there can be findings, with answers, soon.  
 
I'm clicking "post", but don't wish to anger anyone.
 
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Re: Complexity increases!
« Reply #21 on: Dec 31st, 2005, 12:17am »
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There are few names in the CH world that when people see they should pay attention to it.
 
Dr. Rozen is one of them!!!
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Re: Complexity increases!
« Reply #22 on: Dec 31st, 2005, 7:32am »
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on Dec 31st, 2005, 12:17am, E-Double wrote:
There are few names in the CH world that when people see they should pay attention to it.
 
Dr. Rozen is one of them!!!

 
Agree wholeheartedly Eric.  I've simply read the actual written papers from most every major discovery of the 20th century.  The wording of Dr. Rozen's find is, comparably, disappointing.
 
Bob's very first words stand out to me.
Quote:
The significance of this report is not clear--except as a warning that we are dealing with a disorder which is not well understood and likely more complex than we would like to believe. Bottom line: patience and a willingness to explore is crucial to survival!

 
and also this:
Quote:
The last sentence in the abstract is the key: Dr. Rozen is speculating that this nerve may be involved--just a guess on his part at this stage.

« Last Edit: Dec 31st, 2005, 7:34am by Kevin_M » IP Logged
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Re: Complexity increases!
« Reply #23 on: Dec 31st, 2005, 7:44am »
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Kevin,  
I know that overall this wasn't the best, however,
it does bring to light from another professional that those who do not present the same exact way as certain people "here" should not necessarily get "run" off.
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Re: Complexity increases!
« Reply #24 on: Dec 31st, 2005, 8:09am »
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on Dec 31st, 2005, 7:44am, E-Double wrote:
Kevin,  
I know that overall this wasn't the best, however,
it does bring to light from another professional that those who do not present the same exact way as certain people "here" should not necessarily get "run" off.

 
Agree again Eric, that was understood.  I wanted to only express Dr. Rozen's lack of substantiation saying:
  Quote:
This article will suggest that some forms of cluster headache are not primarily hypothalamic influenced and that the GON may play a significant role in cluster pathogenesis in some individuals.

 
I found this hardly humble.  
 
 
I knew I shouldn't have posted.  
 
thanks Eric.
 
 
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