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Title: Non-hypothalamic cluster headache.... Post by E-Double on Aug 15th, 2007, 9:42am 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:
PMID: 16355296 [PubMed - indexed for MEDLINE] |
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Title: Re: Non-hypothalamic cluster headache.... Post by Ray on Aug 15th, 2007, 5:27pm 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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Title: Re: Non-hypothalamic cluster headache.... Post by Marc on Aug 17th, 2007, 12:59am 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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Title: Re: Non-hypothalamic cluster headache.... Post by StressFree on Aug 17th, 2007, 8:18pm 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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Title: Re: Non-hypothalamic cluster headache.... Post by UN solved on Aug 17th, 2007, 8:25pm Quote:
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...... UNsolved |
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Title: Re: Non-hypothalamic cluster headache.... Post by rolo65 on Aug 17th, 2007, 9:00pm 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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Title: Re: Non-hypothalamic cluster headache.... Post by Charlotte on Aug 18th, 2007, 12:23am 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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Title: Re: Non-hypothalamic cluster headache.... Post by rolo65 on Aug 18th, 2007, 12:39am on 08/18/07 at 00:23:32, Charlotte wrote:
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. [smiley=damncomputer.gif] Rolo. ;) |
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Title: Re: Non-hypothalamic cluster headache.... Post by sandie99 on Aug 18th, 2007, 3:36am I read that bit which was quoted and that was very interesting indeed. :) Sanna |
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Title: Re: Non-hypothalamic cluster headache.... Post by Marc on Aug 18th, 2007, 10:12pm on 08/17/07 at 20:18:27, StressFree wrote:
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 08/15/07 at 09:22:55, E-Double wrote:
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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Title: Re: Non-hypothalamic cluster headache.... Post by UN solved on Aug 18th, 2007, 10:27pm 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 UNsolved 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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Title: Re: Non-hypothalamic cluster headache.... Post by E-Double on Aug 18th, 2007, 10:56pm 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...... Enjoy the hot nurses.....I did ;) |
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Title: Re: Non-hypothalamic cluster headache.... Post by Pinkfloyd on Aug 19th, 2007, 12:37am 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?? :-X Bobw |
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Title: Re: Non-hypothalamic cluster headache.... Post by lionsound on Aug 19th, 2007, 2:48am 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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Title: Re: Non-hypothalamic cluster headache.... Post by Kevin_M on Aug 19th, 2007, 7:25am on 08/18/07 at 22:12:56, Marc wrote:
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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Title: Re: Non-hypothalamic cluster headache.... Post by Marc on Aug 19th, 2007, 9:50am Thanks Kevin. Looks like I need to do a lot of reading before opening my mouth again....... Marc |
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Title: Re: Non-hypothalamic cluster headache.... Post by Kevin_M on Aug 19th, 2007, 10:23am 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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Title: Re: Non-hypothalamic cluster headache.... Post by starlight on Aug 19th, 2007, 10:52pm 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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Title: Re: Non-hypothalamic cluster headache.... Post by Pinkfloyd on Aug 20th, 2007, 12:34am on 08/19/07 at 02:48:24, lionsound wrote:
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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Title: Re: Non-hypothalamic cluster headache.... Post by E-Double on Aug 20th, 2007, 8:40am 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:
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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Title: Re: Non-hypothalamic cluster headache.... Post by pattik on Aug 20th, 2007, 9:42am on 08/20/07 at 00:34:25, Pinkfloyd wrote:
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 /spelling |
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Title: Re: Non-hypothalamic cluster headache.... Post by Lenny on Aug 20th, 2007, 11:55am [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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Title: Re: Non-hypothalamic cluster headache.... Post by lionsound on Aug 20th, 2007, 1:40pm 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 08/20/07 at 00:34:25, Pinkfloyd wrote:
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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Title: Re: Non-hypothalamic cluster headache.... Post by Lenny on Aug 20th, 2007, 2:00pm on 08/20/07 at 13:40:39, lionsound 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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Title: Re: Non-hypothalamic cluster headache.... Post by lionsound on Aug 20th, 2007, 2:12pm on 08/20/07 at 14:00:17, Lenny wrote:
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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Title: Re: Non-hypothalamic cluster headache.... Post by nani on Aug 20th, 2007, 2:19pm This is a fascinating discussion. And, I agree with all of you. ;) nani, who has had both classic and atypical CH |
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Title: Re: Non-hypothalamic cluster headache.... Post by Lenny on Aug 20th, 2007, 2:21pm lionsound, I thank you very much,now i can go to lunch without a knot in my stomach [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif]..........Lenny |
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Title: Re: Non-hypothalamic cluster headache.... Post by Pinkfloyd on Aug 20th, 2007, 4:39pm First I said this...among other things: "Maybe he should have widened the criteria for "migraines" instead of clusters, so this poor soul would have a home. " To which, lionsound said this, among other things: on 08/20/07 at 13:40:39, lionsound wrote:
I haven't seen this person personally, but it wasn't a low blow, unless you consider it as such because you have a low regard for people with migraines. Why on earth would you think diagnosing someone with migraines instead of clusters is a low blow? Sounds a bit arrogant to me....Have we determined here that migraines are a 2nd class diagnosis compared to clusters and people that suffer migraines are 2nd class citizens? Listen, please....pure and simple....Rosen widened the parameters of standard cluster diagnostic criteria so this person would fall into that catagory. OK fine, he's trying to determine what the guy has so he can help him....fine. But, he could have just as easily widened migraine symptoms to make the person fall into that catagory. (and yes...a person in pain without a proper diagnosis, has my deepest sympathy and empathy...hence the "poor soul" reference) He made a choice. Gee, maybe he decided to call them clusters because calling them migraines would have been a low blow and he didn't want to insult the guy by saying he had .......migraines. Among one of the other things you said... "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. " What? Just because I am involved in controversial research, I should just nod and wink when I read someone else's work? I have no problem with the premise of "pushing the envelope" you allude to above....but, in this case, the two issues you bring up have nothing in common. Widening diagnostic criteria is one thing, looking outside the envelope on how to treat those criteria, is a different story. Both important, but not comparable in this instance. What Dr Rosen's work can do is make it either easier or more difficult for the treatment end of research. I applaud his work but question his findings, in this case, which is my right. Hopefully he wouldn't view my opinion as a low blow (not that he cares what I think). Bobw |
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Title: Re: Non-hypothalamic cluster headache.... Post by UN solved on Aug 20th, 2007, 5:26pm I think that widening the criteria for the dx of cluster headaches will not help those with atypical cluster headaches, since more and more ex-miagraineurs will find help (or not) that may or may not help the cluster patients now. Also, I would think that those who may have their diagnosis changed from chronic daily migraine or chronic daily headache, etc ... to a dx of chronic clusters would affect their ability in getting permanent or at least tmeporary disability. It would be easier for them to get the disability ... which in turn would probably fund more treatment(s) which means more $$ for the docs. I know what I'm trying to say ... I hope I was able to express those opinions without much confusion. Plus, I don't mean to degrade the diagnosis or migraine or make it seem like a 2nd class condition compared to clusters ... but I've heard soo many people say ... " Oh, I know exactly how you feel. Sometimes I get them so bad that I have to go lie down in a dark room and just sleep for a day or two." .... I wish the pain for the clusters that I'm experiencing were suttle enough for me to lie down and relax in a dark room. It's nowhere near that 'calm' when an attack hits. It's borderline panic mode with insane pain ! PF Wishes all UNsolved Edited for spelling ::) |
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Title: Re: Non-hypothalamic cluster headache.... Post by E-Double on Aug 20th, 2007, 6:17pm I can not believe this started such a discussion albeit discussion is good. any attacks are not......... anyway, Isn't that the point Mike...."atypical" or variant or whatever?? Some may say they agree with the perception of the reported can not be a CH since they were able to sit still without sense of agitation. Whatabout those who have learned to get in the zone and not pace or writhe? there are quite a few ping-pongers here. Does that mean that they do not have CH? Who came up with "shadow" We did. Different levels of attacks? What about the episodics who get "renegade" hits..does it mean that those out of the blue attacks that come when not in cycle were the most horrid of horrid sinus headaches? I didn't interpret the "finding" as a widening of the parameters as it was stated that the person fit the criteria but had some irregularitites I just question everything in general and when I read something of interest I like to share. As far as belittling migraine or any other pain (head pain) I'm lucky in that I have several HA types including CH and Migraine and some others and they are different although sometimes they get mixed up when having all at once....BTW I know rori has a party in her brain too. Carry on |
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Title: Re: Non-hypothalamic cluster headache.... Post by UN solved on Aug 20th, 2007, 7:09pm As they figure out the different types of headaches and the symptoms that accompany them, shouldn't they be given their own classification or diagnosis, even if it is related to or similar to cluster headaches instead of lumping them all together under the cluster category ? Reminds me of a time in 2003 when I truely thought I was losing it. I would awaken suddenly to an extremely loud explosion sound. It seemed as if the building I was just in had been blown to bits ... then the cluster would hit immediatley following (within seconds). I freaked out and called me neuro after a few instances and ended up in the hospital. After a round of DHE, those kinds of attacks stopped. The doc said he thought they were "thunderclap headaches'. I'm just glad that those are history !! UNsolved PS. In the future, will patients who say they have clusters be asked .. "...what kind of clusters do you have? ..." [smiley=huh.gif] |
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Title: Re: Non-hypothalamic cluster headache.... Post by starlight on Aug 20th, 2007, 7:27pm I apologize ahead of time if this comes off sounding ignorant. I just don't understand how there could be a danger of so many misdiagnoses of migraine being diagnosed as cluster and vice-versa. By a neurologist that is--I know regular docs get them mixed up. I had a roommate in college who got fairly frequent migraine (what a pair we were), and I had the pleasure of having a cluster cycle while rooming with her--I oftentimes would go home (away from dorm) when it got bad and actually had to withdraw from full-time classes to part-time (but that's beside the point). Anyway, anyone who had witnessed either one of our headaches never questioned that they were 2 different things. I had a diagnosis back then. So did she. They were just 2 different phenomena. And not to in any way minimize her suffering, but we had 4 other suitemates and they seemed well aware that the nature of my headaches was A) different than hers and B) more painful and C) occurring during the night waking me from sleep. I know people get hit during the day with clusters myself included--but I am just trying to say there are always things different with clusters I think--aren't individual migraines longer lasting than individual cluster hits? In other words, there is always some way to differentiate them from migraine? But my point is I just don't see how they can be easily confused by a neurologist? I can see if someone is getting multiple different kinds of headaches, not just one clear cut type, that could be a source of confusion, but still I think a neurologist who takes their time to take a good headache history is going to be able to usually differetiate cluster from migraine. Sorry if this is ignorant--I just don't think they should be easily confused. |
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Title: Re: Non-hypothalamic cluster headache.... Post by Kevin_M on Aug 20th, 2007, 7:36pm Quote:
http://www.escriber.com/Assets/EscriberDownloads/Images/Head.pdf html: here (http://64.233.169.104/search?q=cache:TnAO1fqFvtkJ:www.prescriber.co.uk/Assets/EscriberDownloads/Images/Head.pdf+Cluster+headache:+causes+andcurrent+approaches+to+treatment&hl=en&ct=clnk&cd=1&gl=us&ie=UTF-8) on 08/19/07 at 02:48:24, lionsound wrote:
It appears a fair confidence past coincidence that it shows up. |
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Title: Re: Non-hypothalamic cluster headache.... Post by Pinkfloyd on Aug 20th, 2007, 8:09pm on 08/20/07 at 19:27:53, starlight wrote:
It's not ignorant at all. You would certainly think so, wouldn't you, that there should be little or no confusion. Unfortunately, the vast majority of people do not go to see a neurologist when they get their first headache and first diagnosis. Plus, just seeing a neurologist does not guarantee a proper diagnosis although it does seem to be getting better from year to year. Widening the diagnostic criteria (whether it's justified or not) and blurring those lines, will most likely (IMHO) increase the number of mis-diagnosed people. As far as the term "shadow" is concerned, I also believe that we may have caused some widening ourselves by coining this phrase. People can now relate the headaches they get to the description of a "shadow" and put two and two together and get 5. My headaches sound like "shadows" therefore I must get clusters. Just thinking that some people may be diagnosed, through the back (shadow) door. Just as a side note so some people don't think I have some agenda here because of the research on psychedelics to treat clusters.....reports indicate, as well as the science of it all indicating, that psychedelics work as well or better for migraine treatments. As far as that research goes, you can lump every migrainer in with clusters. As a matter of fact, if the lines blurred to the point that there were 25 million "cluster" patients, Glaxo and Pfizer would be helping to fund psychedelic research and we'd all be better off. Bobw |
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Title: Re: Non-hypothalamic cluster headache.... Post by lionsound on Aug 20th, 2007, 8:51pm on 08/19/07 at 02:48:24, lionsound wrote:
on 08/20/07 at 16:39:18, Pinkfloyd wrote:
Bob, I HAVE migraines as well. And that's precisely why I called it low. I'm sorry if I wasn't clear. You came across condecening and rude regardless of your intentions. |
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Title: Re: Non-hypothalamic cluster headache.... Post by Linda_Howell on Aug 20th, 2007, 9:07pm Quote:
What????omg....please show me where he did that. I am getting so sick of a lot of this ......I believe BobW was most respectful as well as very good at explaining himself and his ideas. Ideas which have proved to be helpful to so many. I see NOTHING rude...and I read it over a couple of times to make sure I wasn't missing anything. Cheesh!!!!!! ::) ::) |
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Title: Re: Non-hypothalamic cluster headache.... Post by Pinkfloyd on Aug 20th, 2007, 9:09pm on 08/20/07 at 20:51:02, lionsound wrote:
Condescending and rude to whom? Dr. Rosen? My comments that you called "low" were directed toward him and his abstract. Bobw |
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Title: Re: Non-hypothalamic cluster headache.... Post by Ray on Aug 20th, 2007, 9:23pm Hello folks: Play nice -- There's nothing here that's a personal put down. I don't want to seem like a Ray |
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Title: Re: Non-hypothalamic cluster headache.... Post by lionsound on Aug 20th, 2007, 9:25pm on 08/20/07 at 21:09:44, Pinkfloyd wrote:
To whom? to any one else who might suffer differently than yourself. Which includes me. According to you bobw, people on the fringe of the cluster dx are not as important as the others, and according to me they are equally important because I could be considered one of them. Are my headaches less important? Do they pose a risk to the cluster community and treatment thereof? and Dr. RoZen is spelled with a Z ...and yes, it does matter because Dr. RoSen is another HA specialist and someone else entirely. |
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Title: Re: Non-hypothalamic cluster headache.... Post by Pinkfloyd on Aug 20th, 2007, 9:51pm on 08/20/07 at 21:25:58, lionsound wrote:
Well ok then. I will assume that everyone was equally offended and offer my apologies to the 6,602,224,174 (July 2007 est.) people of the world that all suffer in one way or another. on 08/20/07 at 21:25:58, lionsound wrote:
I have no idea how you could have read such a thing into my comments. I also can't believe you are calling me, on spelling. ::) My apologies to Dr. RoZen. Please accept my apologies for anything else I may have said to offend anyone. Bobw |
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Title: Re: Non-hypothalamic cluster headache.... Post by BlueMeanie on Aug 20th, 2007, 10:20pm Anyone who reads the majority of the threads here should easily see there are definately different types of Clusterheads. If you start lumping more variables into the pot, you're going to have way too many people saying they have Clusters. How many times have you talked to co-workers, friends, and family to hear them say "oh.. I get those too". RIGHT ::) Maybe they can distiguish types of clusterheads like in hepatitis A B & C. ;) |
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Title: Re: Non-hypothalamic cluster headache.... Post by Linda_Howell on Aug 20th, 2007, 10:53pm Quote:
Bob you have been nothing but kind, and helpful and honest. Actually for the first time since I've been here, (1998) I am embarassed by...well, it isn't BobW, that's for sure. :'( |
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Title: Re: Non-hypothalamic cluster headache.... Post by E-Double on Aug 20th, 2007, 10:55pm on 08/20/07 at 19:36:47, Kevin_M wrote:
Yes this was written a year before what I posted by the same doctor who works with Goadspy : questioning the criteria. In the article he referenced the following: Too long to post but the study is quite fascinating http://www.blackwell-synergy.com/doi/abs/10.1111/j.1468-2982.2006.00932.x It is just information and healthy debate is good. Especially when based on science. Enjoy and play nice |
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Title: Re: Non-hypothalamic cluster headache.... Post by Sean_C on Aug 20th, 2007, 10:58pm Women don't get clusters, remember that print? ;;D They were wrong before, they'll be wrong again ;;D Things are not always what they seem ;) http://tinyurl.com/35ha3g |
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Title: Re: Non-hypothalamic cluster headache.... Post by Linda_Howell on Aug 20th, 2007, 11:12pm Quote:
Nor can I |
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Title: Re: Non-hypothalamic cluster headache.... Post by UN solved on Aug 21st, 2007, 4:39am I didn't see anything that Bob said that sounded rude or degrading either. Maybe some paranoyia from the other side (not from Bob). Get over it !! Keep up the good work Bob ! :) PF WIshes to all UNsolved |
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Title: Re: Non-hypothalamic cluster headache.... Post by lionsound on Aug 21st, 2007, 7:33am on 08/21/07 at 04:39:06, UN solved wrote:
now i'm"the other side"?!!! that's nice, mike, real nice. and Linda, I am the first person here to embarrss you in ten years?! racist comments on the general board don't embarrass you? I am not sorry if my comments don't tow the party line around here, I AM NOT SORRY for telling bobw he was condescending if it IS MY OPINION that he was. I am entitled to my own opinion a NO ONE has to agree with me. and as Bobw himself said, we need to question people and not follow anyone blindly.... does he get excluded? his comments were sarcastic and slanted. He could have stated his opinion in a different fashion especially since so many people look to him as a resource. and yes, OH MY, i corrected his spelling....the internet police will be arriving at my door any second..eeek! As i said, it does matter...the two docs are in the same field and if someone looks at the thread later it needs to be clear. and yeah, bobw, keep up the good work. -Rori, who's hard work around her the past three years aparently means nothing. |
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Title: Re: Non-hypothalamic cluster headache.... Post by Kevin_M on Aug 21st, 2007, 9:36am Eric, From your link and article provided: Quote:
From Dr. Matharu and P.G article: Quote:
The emboldened is now a part of IHS criteria. The other additional features are common and Dr. Matharu has stated in agreement with P.G one of the additional features. Quote:
This would probably also encompass the additional feature of nocturnal onset being common. However, Dr. Rozen has stated: Quote:
and Dr. Matharu seems convinced and in agreement for the involvement of the hypothalamus. It could not be imagined he has swayed from that stance since, and I know you inferred no reference to that. Dr. Matharu has stressed the importance of correct diagnosis, the difficulties, but stays in agreement with the involvement of the hypothalamus. Quote:
I don't have much to say about the varying exceptions other than an awareness has been discussed in articles to be stated. However, making exceptions the standard would seem to lead to more misdiagnosis than may be generally helpful, whereas maintaining less expansive guidelines for distinguishing CH has probably been more helpful. The dependency of hypothalamus-related seems an investigation not easily departed from, though Dr. Rozen's interests or beliefs may be looking elsewhere, noting exceptions from the many he treats in what appears to me to be a "look what I found" style. He's good at treating CH and that's what matters more to me, differences in research interests occur. It would be good to see Dr. Rozen state what his ideas are in the way of cause, as Dr. Matharu and P.G. have, and perhaps any substantiation. That would be interesting, I don't believe that has been brought here yet, despite though, Dr. Rozen has been very, very helpful for treatment. and I said I wasn't going to comment, ;) good discussion Eric. :) |
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Title: Re: Non-hypothalamic cluster headache.... Post by UN solved on Aug 21st, 2007, 10:49am on 08/21/07 at 07:33:30, lionsound wrote:
That wasn't meant to be mean. If I plan on being mean to anyone, they'll know it, they won't have to guess. To me, your statement seems abit sarcastic. on 08/21/07 at 07:33:30, lionsound wrote:
I know this wasn't directed at me, but this is the internet, there's no way to control statements that you don't agree with. There's always going to be material out here that's offensive to some. If it gets too bad, maybe you'd better stick with a kids zone site such as Disney or something (?) on 08/21/07 at 07:33:30, lionsound wrote:
You are absolutely right. And so does everyone else (entitled to their own opinions and nobody has to agree) *Also, see above post. on 08/21/07 at 07:33:30, lionsound wrote:
Sure, I don't think we should all follow anyone 'blindly' especially if it's questionable. No, Bob's not excluded, he's got the right to question anything he wants too! He's also got the right to state HIS OPINION in his own words, in his own 'fashion', weather you or anyone else likes it or not. * Also see above 2 post on 08/21/07 at 07:33:30, lionsound wrote:
I saw nobody suggest that, except for you. I'm sure everyone here appreciates the hard work she's done, myself included. Thanks Rori !! And BTW, doesn't the word 'apparently' suggest ' that one is assuming ? I try not to assume anything. You know the old saying "Assuming makes and 'ass' out of "u' and 'me'". And furthermore, APPARENTLY is spelled with 2 "p's" not just one. ;) Relax a bit and have a good day ! There's no need in getting upset over an internet discussion. No one is trying to degrade, belittle, or make your pain 2nd to clusters. "Can't we all just get along?" PF Wishes UNsolved |
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Title: Re: Non-hypothalamic cluster headache.... Post by Kevin_M on Aug 21st, 2007, 1:12pm Instead of editing my post AGAIN, I'll insert my missing point here. Where Dr. Matharu and P.G. have mentioned criteria not in IHS, Quote:
they have stated their thoughts with evidence of hypothalamus activity to make their case. Quote:
Whereas, others interested in flexibility to define have offered less, I guess this is my sticking point. If singular cases on the outreaches of CH are treated as CH and it helps the person, then fine. Like earthquake prediction, was this tremor related to that one? It's deep below the surface to actually tell but through illumination by vast studies of the local interior, the larger picture, and the contribution with years of historical data, we would say... This is just my opinion. I would place Dr. Rozen's article under phenomenological science - concerned with basic descriptions and quantifications of phenomena than with true understanding of the mechanisms. Describing more than it explains, with the latter of interest to Ch'ers, too, missing links and all. |
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Title: Re: Non-hypothalamic cluster headache.... Post by UN solved on Aug 21st, 2007, 3:12pm Thanks for your work and thought/effort into this thread Kevin. Great job - Bravo ! You are defianatley a contributor to the site. Best Wishes UNsolved |
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Title: Re: Non-hypothalamic cluster headache.... Post by E-Double on Aug 21st, 2007, 3:31pm on 08/21/07 at 15:12:01, UN solved wrote:
Agreed!!!!!!!!! Always do! Get rid of the bitching and we have a really great conversation which sparks thought ty |
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