cluster Posted November 9, 2014 Share Posted November 9, 2014 Some new research results: Cortical plasticity in episodic and chronic cluster headache Free full text here: http://www.sciencedirect.com/science/article/pii/S2213158214001570 Quote Link to comment Share on other sites More sharing options...
diamondmaker Posted November 9, 2014 Share Posted November 9, 2014 As usual we get back to not really knowing anything. Too "dynamic", data all over the place. I do like the statement "the results suggest that the disease is more likely to be caused by a network dysfunction rather than by a single malfunctioning structure". I find this useful... "The experience of pain has a powerful influence on psychology. It is common sense that receptive or permanent painful stimuli have major impact on mood and anxiety. The comorbidity of headache, depression and anxiety is well investigated (Mercante et al., 2011; Antonaci et al., 2011; Breslau et al., 2003; Mitsikostas and Thomas, 1999; Juang et al., 2000) and probably shares common central processing pathways (Milham et al., 2005; Radua et al., 2010; Yoo et al., 2005)." So, if it is common sense, then why does my neuro and my shrink both look at me cross-eyed when I say I have PTSD caused by my CH. The neuro thinks it is impossible for a neurological condition to be in any way related to a "mental illness". And, the shrink thinks it's all caused by a normal mental illness aggravated by the drugs I take... oh, and have a bucket of SSRIs. Quote Link to comment Share on other sites More sharing options...
CHfather Posted November 9, 2014 Share Posted November 9, 2014 Thanks, cluster!!! Gonna have to commit some real time to studying this. d'maker -- frustrating, isn't it, when your shrink is the one who's crazy! Quote Link to comment Share on other sites More sharing options...
alleyoop Posted November 9, 2014 Share Posted November 9, 2014 Maybe Larry Schorr will chime in on this thread? Quote Link to comment Share on other sites More sharing options...
Fabalicious Posted November 10, 2014 Share Posted November 10, 2014 It IS frustrating. We can't even get all the researchers on the same page, never mind the doctors. "The experience of pain has a powerful influence on psychology. It is common sense that receptive or permanent painful stimuli have major impact on mood and anxiety. The comorbidity of headache, depression and anxiety is well investigated (Mercante et al., 2011; Antonaci et al., 2011; Breslau et al., 2003; Mitsikostas and Thomas, 1999; Juang et al., 2000) and probably shares common central processing pathways (Milham et al., 2005; Radua et al., 2010; Yoo et al., 2005)." This is not only a well known fact, but just common sense really. I was thinking, ( i know...dangerous...lol) we have so many HIGHLY intelligent people on this site, and the skill sets of our members are diverse and encompassing. Could WE do some actual organized research ourselves? We could start with a general questionnaire (covering environmental, psychological, etc., a full spectrum) then work from there. We have to have one of the largest concentrations of CHers on the planet. I realize that we would not have access to things like CT or MRI, but (in my own humble opinion) theres been enough of that done, and there is really nothing more to be gleaned from beating the dead horse. We should look elsewhere. Maybe a REALLY thorough questionnaire would help us spot some common ground, I mean, we already know that none of us has (or has ever) had a "normal" sleep pattern, and from all the posts we all demonstrate obsessive behavior. What do you all think? Could we actually do this ourselves? or is this just my obsessiveness rearing its controlling head? Quote Link to comment Share on other sites More sharing options...
Lieutenant2 Posted November 10, 2014 Share Posted November 10, 2014 All due respect, anybody who is upset with this study clearly doesn't understand it. This is a critical paradigm shift in cluster headache research that opens an incredible number of new avenues for research and, ultimately, treatment. This is the best news we as a patient group have had in the 5+ years I've been involved. Just my $0.02, of course. Quote Link to comment Share on other sites More sharing options...
CHfather Posted November 10, 2014 Share Posted November 10, 2014 This is a critical paradigm shift in cluster headache research that opens an incredible number of new avenues for research Lt2, to help me understand it better as I read it carefully in the next couple of days, can you say a few words about what you see the paradigm shift as being? Quote Link to comment Share on other sites More sharing options...
CHfather Posted November 10, 2014 Share Posted November 10, 2014 Maybe a REALLY thorough questionnaire would help us spot some common ground Fab, a fairly/somewhat thorough study of characteristics of people with CH was done around 2008, using a survey that I think was administered at ch.com. There are definitely many things missing from that (much of what you mention in your post either was not studied or did not appear as significant results -- I'm not sure which). Here's the report on the full study --http://www.docstoc.com/docs/102870436/Cluster-Headache-in-USA_Demographics_Clinical-Characteristics_Triggers_Suicidality-and-Personal-Burden-Nov-2011-Headache -- and here's a related report comparing women and men based on the study: http://www.jns-journal.com/article/S0022-510X%2812%2900128-1/abstract. I have found some of the information in these reports to be helpful when communicating with people with CH . . . but my general feeling about what you are suggesting is that knowing more about characteristics of people with CH is interesting and useful for individuals, but I don't see it as getting one quickly closer to a treatment/cure, since treating these characteristics probably doesn't significantly treat CH. It could be that a complex of typical characteristics would lead back to a common source somewhere that could be treated, but you'd have to factor out (or somehow deal with) all the other people in the population that have the same complex of characteristics but don't have CH. Not yet having done anything more than skimming the article, I'm wondering whether it could be that the complex of brain areas affected by CH might some relationship to these characteristics or other CH characteristics (maybe this is the "paradigm shift" that Lt2 refers to). Just wondering. Quote Link to comment Share on other sites More sharing options...
Lieutenant2 Posted November 10, 2014 Share Posted November 10, 2014 This is a critical paradigm shift in cluster headache research that opens an incredible number of new avenues for research Lt2, to help me understand it better as I read it carefully in the next couple of days, can you say a few words about what you see the paradigm shift as being? Yessir. . .I think your follow-up to Fabac was a pretty good synopsis. The very short version is that, for 5+ years that I'm aware of, the bulk of clinical research has focused on hypothalamic malformations, serotonin, and a very narrow band of related possibilities. Following those lines, most of the research being done has worked toward these ends. Everybody has been looking for the magical "thing" that causes CH. With the results of this study, we are seeing the first (to my knowledge) peer-reviewed work that is pointing to something else. Not only to something other than the hypothalamus, but in fact to something other than a "thing", a malformation or tumor or other disease. This study starts to point to the wiring in our brain. . .wiring which develops over our lifetimes. And the concept of neuroplasticity should be doubly exciting, because this fairly new tenet of neurology means that this wiring can be changed. Quote Link to comment Share on other sites More sharing options...
Fabalicious Posted November 10, 2014 Share Posted November 10, 2014 I did attempt to read the entire article, but its a bit over my head (just a bit, I'm not a TOTAL idiot) What would be a way to change the "wiring"? As simple as training our brains to think differently? or as complex as surgery? Quote Link to comment Share on other sites More sharing options...
diamondmaker Posted November 10, 2014 Share Posted November 10, 2014 As usual we get back to not really knowing anything. Too "dynamic", data all over the place. I do like the statement "the results suggest that the disease is more likely to be caused by a network dysfunction rather than by a single malfunctioning structure". Not really unhappy with the study, just the wasted 5 years as lt2 points out. I do like the shift as well, and agree with it! And re the other post, the traits I want to identify are only to draw a bigger picture of CH. They are more side effects of CH, caused by the cause, and as CHF says, may lead back to a common source. The pain is really a side effect as well. A bigger picture folks. Treatment of traits would follow conventional psychiatric methods, that is useless. Edit: As useless as attempts to treat the pain conventionally! Quote Link to comment Share on other sites More sharing options...
diamondmaker Posted November 10, 2014 Share Posted November 10, 2014 I did attempt to read the entire article, but its a bit over my head (just a bit, I'm not a TOTAL idiot) What would be a way to change the "wiring"? As simple as training our brains to think differently? or as complex as surgery? I would have to say the way to change the wiring is psychedelics... actually not change so much as provide additional paths for a re-wiring job. From the article on MM: "Picture the information in your brain being shared across an interconnected and heavily-trafficked system of highways. In that example, psilocybin isn't removing the highways. Instead, it's simply building new ones. Journal of the Royal Society Interface Visualization of the brain connections in the brain of a person on psilocybin (right) and the brain of a person not given the drug. Edit: And as I understand it the concept of neuroplasticity means the brain is not hard wired, but dynamic enough to re-wire itself. Quote Link to comment Share on other sites More sharing options...
CHfather Posted November 11, 2014 Share Posted November 11, 2014 Here's an early article about neuroplasticity: http://www.nytimes.com/2005/05/08/magazine/08WWLN.html?pagewanted=all Quote from it: >> How will our image of ourselves change as the wrinkled lump of gray meat in our skull becomes increasingly transparent to such exploratory methods? One recent discovery to confront is that the human brain can readily change its structure -- a phenomenon scientists call neuroplasticity. A few years ago, brain scans of London cabbies showed that the detailed mental maps they had built up in the course of navigating their city's complicated streets were apparent in their brains. Not only was the posterior hippocampus -- one area of the brain where spatial representations are stored -- larger in the drivers; the increase in size was proportional to the number of years they had been on the job. It may not come as a great surprise that interaction with the environment can alter our mental architecture. But there is also accumulating evidence that the brain can change autonomously, in response to its own internal signals. Last year, Tibetan Buddhist monks, with the encouragement of the Dalai Lama, submitted to functional magnetic resonance imaging as they practiced ''compassion meditation,'' which is aimed at achieving a mental state of pure loving kindness toward all beings. The brain scans showed only a slight effect in novice meditators. But for monks who had spent more than 10,000 hours in meditation, the differences in brain function were striking. Activity in the left prefrontal cortex, the locus of joy, overwhelmed activity in the right prefrontal cortex, the locus of anxiety. Activity was also heightened in the areas of the brain that direct planned motion, ''as if the monks' brains were itching to go to the aid of those in distress,'' Sharon Begley reported in The Wall Street Journal. All of which suggests, say the scientists who carried out the scans, that ''the resting state of the brain may be altered by long-term meditative practice.'' <<< (Happens to be a subject I write about, for lay readers, from my own very lay understanding. (I didn't write the above.)) (One way in which the "discovery" of neuroplasticity has been very valuable is in working with underperforming kids in schools. Many studies show that when they see their intellectual capabilities not as fixed ("I'm bad at math") but as being like a muscle that develops with use ("If I put in the effort, I can become good at math"), their performance, and their approach to schoolwork, improve significantly. Neuroplasticity science demonstrates to them that the brain-as-muscle thing is true, and not just something their teachers/parents are telling them.) Quote Link to comment Share on other sites More sharing options...
diamondmaker Posted November 11, 2014 Share Posted November 11, 2014 Cool stuff CHF. 8-) Quote Link to comment Share on other sites More sharing options...
Fabalicious Posted November 18, 2014 Share Posted November 18, 2014 Cool stuff CHF. Agreed. I never thought of the brain as a muscle before. Interesting concept. So pretty much the more you "work it" the better the performance? : Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted November 18, 2014 Share Posted November 18, 2014 Cool cool cool (and inspiring) CHF, thanks. 8-) Quote Link to comment Share on other sites More sharing options...
rockhopper Posted November 25, 2014 Share Posted November 25, 2014 Hmm, I don't know any renowned researcher who claims that CH had one single cause- so in my opinion this piece of research does not indicate that there is a paradigm change underway. I'm wondering why researches are coming up with cortical plasticity now or act as if its involvement in pain processing was a new discovery. It's definitely not. I'd argue that we, as humans, wouldn't be able to live in the way we do without cortical plasticity. The concept of "pain memory", which points in a similar direction, has existed for quite some time now as well. Sorry, if I sound negative. I think the underlying concept is far from being a new insight. They could have come up with that much earlier. Quote Link to comment Share on other sites More sharing options...
diamondmaker Posted November 26, 2014 Share Posted November 26, 2014 Hi rockhopper, First, there has been a look towards the hypothalamus since a study came out in 2009 indicating all CH "activity" seemed to eminate from it. I can not link you to the paper, many here can, but it has shifted focus to the hypothalamus for the past 5 years. Neuroplacticity is not new... however it is new to the discovery of conditions like CH. My personal belief is that we, as infants overcame a defect in our neuroplacticity, or "mind networks"... by really putting to task our placticity... causing unseen stress as we are forced to find work-arounds to adjust to plain old life. I think CH is simply a processing problem. A throughput problem. Quote Link to comment Share on other sites More sharing options...
Lieutenant2 Posted November 26, 2014 Share Posted November 26, 2014 And there are two of the biggest barriers we have faced in the history of CH. First, we look to the "renowned researchers" and put them on a pedestal, waiting for them to hand down their wisdom and treating only their words as valid. We can all go ahead and name them, Goadsby and Sewell and so on and so forth. . .I'll even throw in hacks like Halpern. We canonize them based on what, exactly? I can appreciate their work, but they are not gods, nor should they be the only ones whose work is considered valid. Second, the old hypothalamus thing again. It's a little like quantum physics, really. If you fixate on one thing for long enough, your observations will confirm everything you see, and that will be your "fact". So for years, we have been stating, without doubt, that the hypothalamus is the root cause of CH. But what does that particle do when you're not staring at it? What if we've been staring at the hypothalamus for so long that it has caused us to form incorrect hypotheses about CH? I don't mean to bust anybody's balls here, but I see a lot of cognitive dissonance when it comes to CH. We hold these things as facts because we can't make ourselves believe otherwise. It's hard to point the finger at something we can't see, medicate, or surgically remove. But let's face it, the mechanism behind CH meets all three of those criteria, doesn't it? Quote Link to comment Share on other sites More sharing options...
alleyoop Posted November 26, 2014 Share Posted November 26, 2014 I LOVE this thread!! [smiley=thumbsup.gif] Quote Link to comment Share on other sites More sharing options...
CHfather Posted November 27, 2014 Share Posted November 27, 2014 I posted a long, and maybe slightly intemperate, reply here earlier. I’ve removed most of it, but I am retaining an edited version. If my response in what I have retained is still intemperate, so be it. we look to the "renowned researchers" and put them on a pedestal, waiting for them to hand down their wisdom and treating only their words as valid. We can all go ahead and name them, Goadsby and Sewell and so on and so forth. . .I'll even throw in hacks like Halpern. We canonize them based on what, exactly? I can appreciate their work, but they are not gods, nor should they be the only ones whose work is considered valid. This completely mischaracterizes Sewell and Halpern, in a way that I admit infuriates me. Their work wasn’t research into the causes of CH. I don’t remember them even talking about a cause, and they certainly weren’t hypothalamus-fixated. They were interested in treatment—thank God. I don’t think they were even deeply interested about why the treatment worked. They weren't doing research of the kind you're talking about at all. They were doing a different thing (basically, collecting and summarizing the experiences of people who treated CH with psychedelics), for which I will be forever grateful. They are “canonized” for recognizing and promoting effective CH treatments, not for seeking or promoting theories about CH causation. They are not >>the only ones whose work is considered valid,<< except insofar as they were virtually the only medical professionals brave enough to be talking about psychedelics for treating CH. You are attacking the wrong guys here—every single person at this site owes a very large debt of gratitude to Sewell and Halpern, and they had no effect at all on stultifying research into the causes of CH. I assume you know that Dr. Sewell is (tragically) dead, so no one is >>waiting for [him] to pass down [his] wisdom.<< Maybe you think Halpern is a “hack” for some reason I don’t know—that doesn’t change what he did for all of us in promoting awareness of psychedelics for treating CH. We might not agree about the wisdom of trying to make BOL a commercial product, but that doesn’t make Halpern a hack. Nobody pissed me off as much as Halpern with his perpetual optimism about a commercially-available BOL, but that doesn’t make him a “hack,” either. Quote Link to comment Share on other sites More sharing options...
diamondmaker Posted November 27, 2014 Share Posted November 27, 2014 The people doing imaging studies are not usually even headache people... just researchers with new imaging toys playing with them. The Headache docs, who just desperately want to be able to treat this condition, grab on to this information and speculate simply because they have nothing else... so we get back to where is the money to focus on research for CH? With multiple approaches to research mounted at the same time we could perhaps draw a better picture of what we are dealing with rather than wait 5 years for a study to confirm or refute past "evidence". It's hard to point the finger at something we can't see, medicate, or surgically remove. But let's face it, the mechanism behind CH meets all three of those criteria, doesn't it? CH has the dynamic nature that screams plasticity. The way the beast morphs and adjusts to medications... like it is learning its own work-arounds. And that makes it something unseen... a ghost in the machine. Quote Link to comment Share on other sites More sharing options...
CHfather Posted November 27, 2014 Share Posted November 27, 2014 so we get back to where is the money to focus on research for CH? With multiple approaches to research mounted at the same time we could perhaps draw a better picture of what we are dealing with rather than wait 5 years for a study to confirm or refute past "evidence". 100% correct, and very sad. If you're looking for a "thing" (a mechanism, as Lt2 refers to it) that's responsible for CH, you have to start looking someplace. Not only was the hypothalamus a completely sensible place to start looking -- because it controls the timing issues (seasonality and time of day) that define CH, and because it is directly tied in with trigeminal nerve pain -- but early studies showed malformations in the hypothalamus during CH attacks (and most subsequent studies confirmed that). In one of the deleted parts of my intemperate posting above, I showed how researchers have consistently, time after time, suggested that the hypothalamus might not be the causative "mechanism" in CH, but might just be an element in a larger process. Cortical plasticity might or might not account for a new CH research paradigm, but it wouldn't have been recognized if people hadn't started looking first at the hypothalamus (and it wouldn't have been recognized if new and better equipment and models hadn't been developed to make new discoveries possible). Like you say, d-m, the sad thing is that there's so little research going on that all this takes much longer than it should. (I acknowledge what I think is Lt2's point, that looking for physical "mechanisms" is misguided in the first place, and that it's psychological/emotive mechanisms that need studying, but I'm not ready to agree with that and -- again -- I wish there were enough money to fully study both (and anything else anyone can think of).) Quote Link to comment Share on other sites More sharing options...
diamondmaker Posted November 28, 2014 Share Posted November 28, 2014 Oh spiny... I do not think it is simply psychological, it is a problem that is most certainly hard wired. I say a deficit in network capability... that means it is nothing to do with mind over anything... it is mind not able... on a deeper level. We are all very capable people. In fact most of us are exceptional people. It is not a question of being able to navigate this world... it is a matter of how well we throughput the crap we are forced to digest. Quote Link to comment Share on other sites More sharing options...
spiny Posted November 28, 2014 Share Posted November 28, 2014 I agree DM. It could be something as simple as nerve placement being slightly off and our brain dealing with it. Sort of like you go to the dentist and he numbs the normal area for a certain nerve only to find that it did not work. So, he has to go back and hit a few more spots since not all people have nerves placed in the same vicinity. I just deleted my post before I saw your response. Sorry. It really bugs me that some do and more may approach it from the psych angle. > How is that? Better, I hope, than my original post. Quote Link to comment Share on other sites More sharing options...
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