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Topic: Non-hypothalamic cluster headache.... (Read 2517 times) |
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E-Double
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Non-hypothalamic cluster headache....
« on: Aug 15th, 2007, 9:42am » |
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Non-hypothalamic cluster headache: the role of the greater occipital nerve in cluster headachepathogenesis.
Rozen TD.
Michigan Head-Pain and Neurological Institute, 3120 Professional Drive, Ann Arbor, MI 48104, USA.
Quote:| 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. |
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PMID: 16355296 [PubMed - indexed for MEDLINE]
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Ray
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Re: Non-hypothalamic cluster headache....
« Reply #1 on: Aug 15th, 2007, 5:27pm » |
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Hello and thanks for the reference.
Certainly the description of the somewhat odd symptoms in the Abstract sound unlike most of us. I haven't yet read the article.
Ray
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Marc
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Re: Non-hypothalamic cluster headache....
« Reply #2 on: Aug 17th, 2007, 12:59am » |
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This article will suggest that some forms of cluster headache are not primarily hypothalamic influenced
I am quite surprised that this statement didn't get a lot of comments.
Marc
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StressFree
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Re: Non-hypothalamic cluster headache....
« Reply #3 on: Aug 17th, 2007, 8:18pm » |
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Hey Marc, you're not a newby! Great to run into you.
I would like to see the rest of the article. I think they charge for online subscription?
Rich
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Re: Non-hypothalamic cluster headache....
« Reply #4 on: Aug 17th, 2007, 8:25pm » |
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Quote:| " patient is presented who began to develop cluster headaches after receiving bilateral greater occipital nerve (GON) blockade. " |
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This person developed cluster headaches after an Occipital nerve block ... doesn't that sound strange ? Why get an ON block if you don't have clusters to begin with. And even though the symptoms may appear to be the same, is it really cluster headache that they developed after the block or another type of (headache) pain? If that is true, then ON blocks can be a cause of clusters ?!?!!
Things that make you go ...Hmmmmmm......
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rolo65
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Re: Non-hypothalamic cluster headache....
« Reply #5 on: Aug 17th, 2007, 9:00pm » |
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I had a Occipital nerve block and when it wore off I had a week of pure hell afterwords. Screw that! Never again.
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Charlotte
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Re: Non-hypothalamic cluster headache....
« Reply #6 on: Aug 18th, 2007, 12:23am » |
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I followed the link and did have to sign up but there was no fee. Unfortunately, I have a new computer and I now have a problem sometimes when I down load in that I have to pick what program I want to save an article in, and if I don't know what was used to create the article, I can never open it.
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| « Last Edit: Aug 18th, 2007, 12:24am by Charlotte » |
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rolo65
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Re: Non-hypothalamic cluster headache....
« Reply #7 on: Aug 18th, 2007, 12:39am » |
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on Aug 18th, 2007, 12:23am, Charlotte wrote:I followed the link and did have to sign up but there was no fee. Unfortunately, I have a new computer and I now have a problem sometimes when I down load in that I have to pick what program I want to save an article in, and if I don't know what was used to create the article, I can never open it.
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There is a way to set your file preferences so you can see the file extension or the 3 characters after the dot in the file name. This usually will clue you in on the program that created it. For example .PDF for acrobat or .DOC for Microsoft word. Then when the computer asks what program to open it with, you’ll know and can check the do this always box so the computer will know how to handle the file in the future. I hope this helps. 
Rolo.
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sandie99
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Re: Non-hypothalamic cluster headache....
« Reply #8 on: Aug 18th, 2007, 3:36am » |
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I read that bit which was quoted and that was very interesting indeed. 
Sanna
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Marc
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Re: Non-hypothalamic cluster headache....
« Reply #9 on: Aug 18th, 2007, 10:12pm » |
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on Aug 17th, 2007, 8:18pm, StressFree wrote:Hey Marc, you're not a newby! Great to run into you.
I would like to see the rest of the article. I think they charge for online subscription?
Rich |
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Howdy Rich - sometimes life makes you start over - not too many people here remember me, so a newbie I am
Dr. Rosen's approach seems to be headed toward redefining CH's, or at least hanging the diagnosis on anything even close to the IHS criteria. My comments are based on the combination of this article plus the one quoted here:
on Aug 15th, 2007, 9:22am, E-Double wrote:: Headache. 2007 Jul;47(7):1093-5. Links
Pure menstrual cluster headache.Rozen TD.
Michigan Head-Pain and Neurological Institute, Ann Arbor, MI, USA.
The influence of the menstrual cycle on female cluster headache is not well documented in the literature. A case patient is presented who had cluster headaches only during her menstrual cycles. This appears to be the first ever reported case of pure menstrual cluster headache.
PMID: 17635603 [PubMed - in process]
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I am not qualified to argue against his findings, my education in CH’s comes only from being chronic for 10 years. I am still more than surprised that the good folks on this board are letting these things just slide by without comment.
Hey, maybe he’s right and lots and lots of headaches are actually CH’s and we just didn’t know it………
Respectfully,
Marc
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| « Last Edit: Aug 18th, 2007, 10:15pm by Marc » |
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Re: Non-hypothalamic cluster headache....
« Reply #10 on: Aug 18th, 2007, 10:27pm » |
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Marc,
I understand what you are saying. It does seem that more and more ppl are being diagnosed with clusters. Is there really that many more ppl with it or is it that it is being more and more misdiagnosed (?). I think the latter.
I don't exactly know how to explain this, but I'll try: I sometimes feel like (my) clusters are being underestimated when someone else is dx with the same, when theirs are much less severe and frequent. The clusters that I experience are excruciating (to say the least) and daily. There is no cluster-migraine in my book. Not sure if that made sense or not 
PF Wishes
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PS. I can vouch that Dr. Todd Rozen knows clusters though... I met him (and Dr. Joel Saper) several times at MHNI and Chelsea Hospital. Dr. Rozen is not afraid to get off the beaten path and try new things to help with clusters.
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E-Double
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Re: Non-hypothalamic cluster headache....
« Reply #11 on: Aug 18th, 2007, 10:56pm » |
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What's really interesting is that there are quite a few docs (big name docs) who you'll see doing a subtle eye roll in reference to it totally stemming from the hypothalmus....My doc included.
I just read the stuff and know that through consult Dr. Rozen helped my a$$ a couple of years agol.
Interesting reads........
I totally agree with you Mike, however, I sometimes look at my own CH and wonder because I do have other things going on that it is sometimes hard to tell.
I mean if I am having zaps if it is just part of the precursor or shadows or if I am having some icepick variant in the same area.
Since coming out of the hospital in July I can honestly say (knock on wood) that I have only had a handfull of attacks that have slammed me. I shadow a lot but I can handle things a lot better because I am sleeping again and not getting battered day and night.
Things are definitely not always clear cut.
Here is a tangent......We go by IHS criteria. In my field we go by DSM criteria in both there will always be the Variant or the NOS ( not otherwise specified)
Diagnostic criteria changes from time to time
Then what????
those who had things suddenly don't or those who didn't suddenly do???
CH sucks period......
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Pinkfloyd
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Re: Non-hypothalamic cluster headache....
« Reply #12 on: Aug 19th, 2007, 12:37am » |
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I have to agree with Marc and the others about this being a bit ...hmmm...uh,,,, weird.
How can there be a "nonhypothalamic form of cluster headache"?
Call it something else if you want but it's like saying there is a form of bicycle that has no wheels or pedals. Some people have been calling this a sled but I think it is a form of bicycle. 
A cluster attack does not stop people from sitting still because they are agitated....as if we're just stomping around because we're pissed. We're stomping around because of the pain level. It's more like an autonomous response. Like when you have to shake your hand after slamming your thumb in a car door.
With all the missing symptoms.....what symptoms were there that make them clusters? The patient said it hurt more than a migraine? "I get this bad pain in my head every so often, sometimes on the right side, sometimes on the left side....sometimes for an hour, sometimes for a 15 minutes, but if I sit there long enough, the pain goes away. I think I have cluster headaches doc!!"
I know there are ranges and differences in symptoms from one person to another, and I understand and appreciate Dr. Rosen's work on trying to understand clusters...but this one doesn't sit right at all with me.
But.....what do I know?? 
Bobw
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lionsound
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Re: Non-hypothalamic cluster headache....
« Reply #13 on: Aug 19th, 2007, 2:48am » |
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here's my opinion...
Cluster headaches are medically defined by symptoms, not origin.
Based on legitimate studies we assume clusters stem from the hypothalmus, but since everyone can't jump into an MRI when we are in pain we don't really know that for sure. And even if we could, the hypothalmus influences so much of how we operate everyday, that it may be co-incidence that it "shows up" on the MRI.
NO ONE KNOWS FOR SURE or we'd be closer to a cure.
and certainly CH varies greatly from person to person that no one can say any origin is 100% applicable to everyone. As much as we all are the same we all can have differences in presentation.
and so Dr. Rozen, who we'll consider an expert, is within parameters to classify this person with CH. I understand and respect the worry about misdiagnosis on a grand scale for lots of reasons.
I came across someone recently who claimed to have a cluster dx. Something in the things she said and the way she behaved made me feel otherwise. I would so not pick her for a CH poster child, but i was polite and kept my mouth shut because I was not there to see her in pain and I am not a doc. Her worst pain is her worst pain and who am I to say my pain is "better."
Having been personally misdiagnosed for 20 years because I am not a classic cluster case ... I have five HA types that get all jumbled up ...I am sometimes reluctant to play armchair neurologist with people.
And who knows? Maybe not too long ago I might have been one of these outskirt kind of cases like Dr. Rozen is reporting about today.
I think it's great that Dr. Rozen is pushing parameters a little.... that's how we learn things. And I'm more excited that we all are discussing it
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| « Last Edit: Aug 19th, 2007, 2:53am by lionsound » |
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Kevin_M
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Re: Non-hypothalamic cluster headache....
« Reply #14 on: Aug 19th, 2007, 7:25am » |
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on Aug 18th, 2007, 10:12pm, Marc wrote:| I am still more than surprised that the good folks on this board are letting these things just slide by without comment. |
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Bob J presented this article awhile back, maybe a year or so here and it brought questioning comments, including my own.
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| « Last Edit: Aug 19th, 2007, 7:28am by Kevin_M » |
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Marc
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Re: Non-hypothalamic cluster headache....
« Reply #15 on: Aug 19th, 2007, 9:50am » |
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Thanks Kevin.
Looks like I need to do a lot of reading before opening my mouth again.......
Marc
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Kevin_M
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Re: Non-hypothalamic cluster headache....
« Reply #16 on: Aug 19th, 2007, 10:23am » |
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Marc,
I agree with you that the present seeming lack of commentary would be surprising to see, astute observation. I just didn't want to rehash and comment again, myself.
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| « Last Edit: Aug 19th, 2007, 2:10pm by Kevin_M » |
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Re: Non-hypothalamic cluster headache....
« Reply #17 on: Aug 19th, 2007, 10:52pm » |
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When I read this article what jumped out at me the most was that Dr. Rozen was looking at the "role of the greater occipital nerve" in cluster headache and that he had deduced from the patient's experience with the nerve block that the greater occipital nerve was involved in the creation of that man's cluster headache. Maybe he's just trying to widen the field of inquiry?
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Pinkfloyd
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Re: Non-hypothalamic cluster headache....
« Reply #18 on: Aug 20th, 2007, 12:34am » |
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on Aug 19th, 2007, 2:48am, lionsound wrote:
I think it's great that Dr. Rozen is pushing parameters a little.... that's how we learn things.
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Posted by: starlight
Posted on: Today at 9:52pm
Maybe he's just trying to widen the field of inquiry?
And maybe if he widens the field by pushing the parameters too much.....it will increase the number of mis-diagnosed people.
Believe me, I'm not trying to keep this some sort or exclusive "club"
The more people diagnosed with clusters, the better...research-$-wise.
Widening the parameters though, if done incorrectly, would only SLOW research and cloud the real cause/origin/cure.
It sounds more to me like this person didn't fit any existing criteria so Rosen widened (ignored) the current diagnostic criteria for clusters so this person would fit in and have a diagnosis. I'm not one to say he's right or wrong but by blindly accepting his conclusion, if he is wrong, doesn't help cluster research and can make it worse and waste valuable time and money running down the wrong rabbit hole.
If he's right, of course it would help track down a cure some time in the future.
I believe the the question should be asked though...if he's right or not. I stopped blindly following "experts" conclusions a long time ago.
Maybe he should have widened the criteria for "migraines" instead of clusters, so this poor soul would have a home.
It hasn't been proven that clusters originate in the hypothalamus. They haven't answered why, or what makes the hypothalamus do what it does during a cluster attack/cycle. Who knows...maybe the ON triggers the hypothalamus to go haywire.
Don't be afraid to question findings or theories just because it comes from a supposed "expert".....as a matter of fact, the followup questions, and asking them to prove their theory, or point out possible flaws in their theory, is exactly what is needed to move them to the next step in finding a cure.
The key is getting people the "right" diagnosis. It won't do the people on the fringe, that are there because they widened the criteria to include them, when they do come up with a cure for clusters and the mis-diagnosed people (if they are mis-diagnosed) are left out in the cold.
Bobw
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E-Double
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Re: Non-hypothalamic cluster headache....
« Reply #19 on: Aug 20th, 2007, 8:40am » |
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How do "we" think those who do not have the clockwork attacks like classic CHer's fit in?
There are those that were clockwork then things went heywire and random only to become clockwork again.
There are those who from what I have read do not present with any real pattern yet fit all of the other criteria
I agree that if diagnostic criteria is broadened too much that more problems may occur with additional misdiagnosis.....I see this in my field as well.
Who knows?
I just honestly find it interesting that the "Names" including those who work directly with Dr. Goadspy have questions.
Quote:Nature Clinical Practice Neurology (2006) 2, 422-423
doi:10.1038/ncpneuro0245
Received 29 March 2006 | Accepted 31 May 2006
Are the current diagnostic criteria for cluster headache too restrictive for clinical practice?
Manjit S Matharu |
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Debate is healthy and we need to question the experts as Bob says because We have to be our own best advocates and not sit blindly.
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pattik
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Re: Non-hypothalamic cluster headache....
« Reply #20 on: Aug 20th, 2007, 9:42am » |
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on Aug 20th, 2007, 12:34am, Pinkfloyd wrote:
Widening the parameters though, if done incorrectly, would only SLOW research and cloud the real cause/origin/cure.
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I have to agree with this statement. I remember reading Bob J.’s post about this article some time ago, and when the other one came up regarding a case of CH which followed a woman’s menstrual cycle, I didn’t make the connection. Dr. Rozen is presenting single cases which appear to be out of the ordinary, and I’m wondering a little about his agenda here. In my opinion, it seems that broadening the criteria for CH would have a detrimental effect on research, at least in that it would create more areas that need to be documented and followed in subjects--really complicating everything. I guess that wouldn’t be a problem if there were already lots of researchers with lots of money working on this problem.
Pat
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| « Last Edit: Aug 20th, 2007, 12:09pm by pattik » |
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Lenny
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Re: Non-hypothalamic cluster headache....
« Reply #21 on: Aug 20th, 2007, 11:55am » |
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[quote author=Pinkfloyd link
It hasn't been proven that clusters originate in the hypothalamus. They haven't answered why, or what makes the hypothalamus do what it does during a cluster attack/cycle. Who knows...maybe the ON triggers the hypothalamus to go haywire.
Don't be afraid to question findings or theories just because it comes from a supposed "expert".....as a matter of fact, the followup questions, and asking them to prove their theory, or point out possible flaws in their theory, is exactly what is needed to move them to the next step in finding a cure.
Bobw [/quote]
I agree 100% of above....Lenny
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yes a newbie,unfortunately not to the beast!!!Chronic - Clusterhead
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lionsound
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Re: Non-hypothalamic cluster headache....
« Reply #22 on: Aug 20th, 2007, 1:40pm » |
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First of all, for those who don't know me... I am far from a follower. No worries, bobw, no blind following here.
I'm a questioner. and if i had anyone of these experts in a room I would not hesitate to ask them about their findings. Goadsby, Rozen, Tepper,Sheftell..
actually Sheftell is my doc and I ask him questions all the time.
Dr. Rozen is a headache specialist so if anyone would see "fringe" cases and recognize them as anything close to what they should be... it would be him. He one of a few that has the volume of CHer's and other HA types sitting in his office. So if Rozen sees something of merit worth sharing I think it's worth discussing. He could be right, he could be wrong. At least he's keeping us informed.
on Aug 20th, 2007, 12:34am, Pinkfloyd wrote:
Maybe he should have widened the criteria for "migraines" instead of clusters, so this poor soul would have a home.
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I was told i had migraines for years and then ER doc SAW me and my headache. Guess what? CLUSTER!!! funny how many of my "migraines" got better once i started treating the clusters as clusters. So, bob, unless you have personally seen this person your comment was low.
Misdiagnosis is unfortunately intrinsic in medicine, it's not a CH issue alone. We shouldn't let fear of it inhibit knowledge. It's a tricky balance to find.
And remember if docs didn't push parameters and take risks, people like Dr. Sewell wouldn't be doing his psilocybin research either. You can't have research pushing one contreversial way and not another.
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Lenny
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Re: Non-hypothalamic cluster headache....
« Reply #23 on: Aug 20th, 2007, 2:00pm » |
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on Aug 20th, 2007, 1:40pm, lionsound wrote:| First of all, for those who don't know me... I am far from a follower. No worries, bobw, no blind following here. |
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Would you mine explaining your comment above as far as being a follower...I cant help but take that as a personal attack on me because i agree on what bob said on a few of his comments...If not i apologize,if so please explain....Lenny
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yes a newbie,unfortunately not to the beast!!!Chronic - Clusterhead
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lionsound
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Re: Non-hypothalamic cluster headache....
« Reply #24 on: Aug 20th, 2007, 2:12pm » |
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on Aug 20th, 2007, 2:00pm, Lenny wrote:Would you mine explaining your comment above as far as being a follower...I cant help but take that as a personal attack on me because i agree on what bob said on a few of his comments...If not i apologize,if so please explain....Lenny
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No Lenny, not an attack on you at all. Sorry if it came out that way because it was right after your post. I was NOT commenting about you or your post.
Bobw quoted me in his post and I wanted to make it clear that I wasn't following anybody.
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| « Last Edit: Aug 20th, 2007, 2:13pm by lionsound » |
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