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Lately I have been thinking about the homeostasis in human body, the state of "equilibrium" which Les Genser for an example often mentioned. I have always thought that when dealing with clusters, sleep is absolutely The Treatment number one which we often do not remember to mention. Sleep is crucial for maintaining homeostasis. What if cluster headaches lead to homeostatic imbalance due to lack of proper sleep? (One might think what if they are result of a homeostatic imbalance in the first place) What if in different treatments that are effective the treating component is only partly responsive of the healing and the rest of the work is being performed by our own bodies? This might explain the reported record-breaking long stretches of PF after first busting for an example, and how clusters can "get better" after getting rid of lots of medications. And maybe lots of "official" medications also prevent the body ever reaching homeostasis (what your body IS trying to do every second of your life) and may lead the condition to get more severe and even turn chronic. Some of the big puzzles may be rather simple in the end. Any thoughts ?

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Hey Tony. . .good post! You know we share an awful lot of theory about this whole CH thing, so I absolutely agree about homeostasis. But I like to take it back one step further. What if it's not the hypothalamus? What if CH is not a physical disease, but an emotional/psychological one? So we present a stressor to the brain (whatever it may be), we have an inappropriate stress response that signals the amygdala "Holy shit, bear! Run!", our brain leaps into fight/flight mode, releasing a bunch of adrenaline and cortisol, we get a serotonin drain, our immune system says "Hang on, there's no bear, what's going on here?" and launches a full histamine-like response, and we get stabbed in the eye?

So, when we load up on pharmaceuticals, they can help treat the immune reaction and the things that happen "downstream", but the "thing" is still there.

When we use tryptamines, we are resetting some of the serotonin receptors and stopping the "slosh", at least temporarily. But the "thing" is still there.

It's funny how the more medications we take, the worse we feel in the long run. The body reacts to every single thing we put in it. Take 10 pills a day, the body has to identify and react to all 10 of them. I can personally name at least six CHers who used to be episodic, and have turned chronic, who attribute it to pharmaceutical use.

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Ha ! Very true Lieutenant2, we have had scaringly similar thoughts sometimes ! Always appreciate your cool input. The whole first chapter is some of my thoughts exactly... I have sometimes thought what if the result (pain) and the condition is being born might be something like we ought to REACT big time to the stress response, physically, emotionally - maybe scream, be violent, fight or escape, handle our feelings, traumas, get those chemicals flowing, whatever - different for everyone; when we don't "follow our instincts" it leads to repeating god-awful pain suffered in silent darkness.

Way before the internet and before ever connecting to another patient I spent time in libraries reading about similar symptoms and whole stress system (way before having name for my condition or seeing the first doctor). I always remember how one of my thoughts was that "Man, I've had some horrible things happened in my past, I have not dealt with them, could this pain be something forcing me to cry about all of it since I can't even cry nowadays".

Even when/if the hypothalamus is heavily involved, it seems that in the medical field there's always the danger to focus too much on one organ for an example and separate the emotional from the physical. I think it's really important to have this kind of discussion going on patient communities for that reason

:)

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Exactly, my friend! Which is why I cringe every time I see someone post "it's your hypothalamus, take some psychedelics, there's nothing else you can do!" To me, this is the equivalent of "Why do you need a phone in your pocket? What's the point of going to the moon? What kind of idiot would climb a mountain?" I fail to accept that this is as good as it gets.   :)

(PS - For the record. . .it's not.)

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For the sake of discussion . . . .

Seems to me that you have to be careful about what's correlation and what's causation.  I know a person with CH who has virtually never taken any CH meds. No verap ever, no pred ever, no trex ever . . . not even any oxygen for the first ten or more years of her CH.  No other meds (for other conditions), either.  Her cycles keep getting longer and more severe.  I've read a lot of personal accounts of people with CH who went long periods without medication before they were diagnosed -- their cycles also got worse over time.

I'm not favoring meds (obviously), just saying that almost everybody with CH takes a lot of meds, but the counter-examples don't seem to me to fully support the idea that it's meds that make cycles worse (or make people chronic).  Yes, we often see people here who feel better when they stop their meds to detox, but that's a short-term thing that might not last.

I'd make a similar point about the emotional/psychological theory.  This condition has been around forever, first officially diagnosed in 1641.  Lots of people have had it in very different stress environments.  Most people -- often people with more stress than those who get it -- don't get it.  Many who get it would not describe their lives before they got it as distinctly stressful.  I'm not saying stress might not be a trigger of some sort, or even a cause, but even if that's the case, doesn't it seem like there has to be some distinctive physical mechanism that converts stress into CH pain in some people but not in most people?

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Ok...I usually stay away from these discussions because I dont want to look like a total derp  :P...but....speaking for myself only, I have had CH since I was a small child, I dont know if from birth, but definitely since around the age of 4 which is my earliest memory of an attack.  How would stress and/or how we react with it come into play at that early of an age? I admit I did have a LOT of high end stressors as a child, and even more as a young adult, and I have always been told that I internalize...hmmm much fodder for the mind...

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AND one more thing....I agree with Tony that sleep is an often overlooked common factor.  I have NEVER ever had a "normal" sleep cycle.  Cant shut down the mind enough to drift off...so I tend to do without until I am ready to drop, then sleep, but usually only for 4-5 hours.

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Well it's a bit complex and multi-facted for my pea brain - I'm glad people are trying to figure out the "why" of CH, as I go into overload just with the "how" to snuff it (realizing though that why and how can be related!).

So I'll just say that while there can appear to be a real  correlation between meds and increasing severity/going chronic etc., I personally retain a wee bit of reservation there, especially when headbangers (understandably) suspect imitrex for worsening their CH.

Ya see I go back to before the stone age, and had 13 or so years of episodic CH experience when there was no imitrex to be had. And danged if my cycles weren't getting longer and more severe during that pre-imitrex era.

So far I also fit a certain, not uncommon CH profile where yes, over the decades cycles do extend and severity ramps up, but remissions also lengthen, despite pharmaceutical use, and eventual complete CH burnout is a real possibility. Remission times can expand exponentially, as mine have since having adopted heavy imitrex usage (prior to my successful busting). Granted, this is not the most common profile among members here, as there is a disproportionatley high percentage of chronics here compared to the general CH population, but I still have seen many members report this type of experience.

Also, regarding stress and emotions as a cause for CH, yes penty of CH'ers have been afflicted since they were babies.

Sleep: Man I was a good sleeper - I was like a pro! - up until around the time my CH started, approx. age 22.

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Ahhh, good stuff! And all very solid points. Now, a point I should mention. . .I'm not defining "stress" in the classic sense (late for work, too many bills to pay, kids fighting, etc.). I'm mainly talking non-environmental biological stress. Short example:

When we were animals on the savanna, "stress" was 60 seconds of running and screaming because we were being chased by a lion. In 60 seconds, either it was over or we were over. We evolved from some of those animals with the same stress-handling equipment. The amygdala identifies the danger, the hypothalamus decides what to do about it, and the adrenals blast us with hormones to make it happen.

Only now, stress isn't a lion chasing us for 60 seconds, it's a low-level but constant grind, present 24 hours a day. But we still have the equipment for the 60-second sprint. Everybody has a different response, but people with idiosomatic disorders (like CH) seem to respond negatively with physical symptoms. By this definition, early in life or late in life doesn't really matter, it just happens when our brain says, "OK, that's enough of this crap!"

An excellent read that I strongly recommend to every CHer is "When the Body Says No" by Dr. Gabor Mate. It changed my whole outlook on cluster headaches.

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When we were animals on the savanna, "stress" was 60 seconds of running and screaming because we were being chased by a lion. 
  I doubt this. I suspect that life was pretty darn stressful, in all ways, way back then -- at the best, what you describe as "a low-level but constant grind, present 24 hours a day."  You had to worry about the lion (or whatever) a very large part of the time. You were out hunting where he (or more accurately she) was out hunting.  You were hungry.  You were sick.  You were probably injured in one way or another and just living with constant pain.*  What was average or median life span then -- 30 years?  The amydgala pretty certainly developed its hypervigilant nature back then, along with the reticular activating system (RAS) to amplify the message through the body. I would bet that those ancestors of ours were big bundles of fear.

I agree with you that the book you mention is indeed very valuable.

* As an example of living with pain, here's an excerpt from a Smithsonian magazine account of the study the remains of "Kennewick man," who lived about 9,000 years ago:

There’s a wonderful term used by anthropologists: “osteobiography,” the “biography of the bones.” Kennewick Man’s osteobiography tells a tale of an eventful life, which a newer radiocarbon analysis puts at having taken place 8,900 to 9,000 years ago. He was a stocky, muscular man about 5 feet 7 inches tall, weighing about 160 pounds. He was right-handed. His age at death was around 40.

Anthropologists can tell from looking at bones what muscles a person used most, because muscle attachments leave marks in the bones: The more stressed the muscle, the more pronounced the mark. For example, Kennewick Man’s right arm and shoulder look a lot like a baseball pitcher’s. He spent a lot of time throwing something with his right hand, elbow bent—no doubt a spear. Kennewick Man once threw so hard, Owsley says, he fractured his glenoid rim—the socket of his shoulder joint. This is the kind of injury that puts a baseball pitcher out of action, and it would have made throwing painful. His left leg was stronger than his right, also a characteristic of right-handed pitchers, who arrest their forward momentum with their left leg. His hands and forearms indicate he often pinched his fingers and thumb together while tightly gripping a small object; presumably, then, he knapped his own spearpoints.

Kennewick Man spent a lot of time holding something in front of him while forcibly raising and lowering it; the researchers theorize he was hurling a spear downward into the water, as seal hunters do. His leg bones suggest he often waded in shallow rapids, and he had bone growths consistent with “surfer’s ear,” caused by frequent immersion in cold water. His knee joints suggest he often squatted on his heels. I like to think he might have been a storyteller, enthralling his audience with tales of far-flung travels.

Many years before Kennewick ManÂ’s death, a heavy blow to his chest broke six ribs. Because he used his right hand to throw spears, five broken ribs on his right side never knitted together. This man was one tough dude.

The scientists also found two small depression fractures on his cranium, one on his forehead and the other farther back. These dents occur on about half of all ancient American skulls; what caused them is a mystery. They may have come from fights involving rock throwing, or possibly accidents involving the whirling of a bola. This ancient weapon consisted of two or more stones connected by a cord, which were whirled above the head and thrown at birds to entangle them. If you donÂ’t swing a bola just right, the stones can whip around and smack you. Perhaps a youthful Kennewick Man learned how to toss a bola the hard way.

The most intriguing injury is the spearpoint buried in his hip. He was lucky: The spear, apparently thrown from a distance, barely missed the abdominal cavity, which would have caused a fatal wound. It struck him at a downward arc of 29 degrees. Given the bone growth around the embedded point, the injury occurred when he was between 15 and 20 years old, and he probably would not have survived if he had been left alone; the researchers conclude that Kennewick Man must have been with people who cared about him enough to feed and nurse him back to health. The injury healed well and any limp disappeared over time, as evidenced by the symmetry of his gluteal muscle attachments. ThereÂ’s undoubtedly a rich story behind that injury. It might have been a hunting accident or a teenage game of chicken gone awry. It might have happened in a fight, attack or murder attempt.

Read more: http://www.smithsonianmag.com/history/kennewick-man-finally-freed-share-his-secrets-180952462/#aJb1iQi2p6Ek3koP.99

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What I remember from that book is the idea that deeply-held psychological injuries can account for pain (and maybe disease), and that releasing those injuries can treat the pain.  Maybe I'm remembering it wrong, or for that matter, remembering the wrong book.

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I have NEVER ever had a "normal" sleep cycle.  Cant shut down the mind enough to drift off...so I tend to do without until I am ready to drop, then sleep, but usually only for 4-5 hours.

I'd say this is the stress right here. I have to sing the same song as Lieutenant2 here, too often we associate stress as something we are aware of, or something we have "brought on to ourselves" meaning we can figure out where it comes from. There are many types of it, not just conscious one (when you "know" you are stressed). There's unconscious stress, subsconscious stress and the episodic stress is actually good, it's the chronic one that can cause stuff. Not having a normal sleep cycle for an example would fall into these categories.

I'm always thinking that I sound like a broken record when I urge clusterheads to read 'When Body Says No'. It was a real eye- and mind opener for me as well, concerning cluster headaches, even when it does not directly cover them at all. The ideas like stress is a measurable attribute, can be found in plants for an example, how it to some degree may even "draw our fate" (poor allegory with my poor english, sorry guys) was mindblowing for me. It just explained a lot of things I had never figured out or drawn the line from a to b. Everyone, get the book and read it. You can read the first chapter online on this page:

http://drgabormate.com/preview/when-the-body-says-no-chapter-one/

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Only now, stress isn't a lion chasing us for 60 seconds, it's a low-level but constant grind, present 24 hours a day. But we still have the equipment for the 60-second sprint. Everybody has a different response, but people with idiosomatic disorders (like CH) seem to respond negatively with physical symptoms. By this definition, early in life or late in life doesn't really matter, it just happens when our brain says, "OK, that's enough of this crap!"

If I imagine these "cavemen" and a sudden lifethreatening event, I'm thinking they reacted 10 out of 10 times - to everything. Those who didn't, died. What if we get lifethreatening events or anything that gets the same juices flowing in our brain, but we don't react at least in a way "nature intended" but we hide our reactions, because that's how it goes in more modern society. Our command center for fight or flight, the hypothalamus, gets all f**ked up in the aftermath and in the very end of the loop all the warning signs morphed into wrong or mixed signals manifest themselves as severe head attacks.

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Oh my, 3rd reply in a row, maybe I need to cut down on the coffee.

Anyhow, I was just a reader on different boards for years, trying to figure out why my CH was going worse. At this time I started to form an opinion that people who used no medication seemed to stay the same from year to year and from decade to decade and people who used prescription medication in growing amounts (bigger dosages or added meds, not replaced) seemed to go worse in a relatively short amount of time.

Even with all the information I had gathered, I could not detox completely myself and quite sadly witnessed everything I knew to come true. My 1st cycle was only 2 weeks and all the years I was not medicated it was always weeks, never more than 4 weeks. With prescription medication cycles started to grow immediately plus the severity of the hits grew; always when I thought there's no freakin' way it could get any worse it did. I believe it always can if doped enough. Just before turning chronic my cycle lasted 8 months (it had been 6+ months for years). When I was chronic I was more medicated than ever. Having more hits than ever (1hr of Pf yet shadows were present 24/7 was very, very rare luxury), harder hits than ever and even the classics (oxygen for an example) became ineffective. With enough meds in my system I could have hits for weeks which O2 did not even start to touch.

To cut a long story short, I had to be pushed to the point where there was either a slot 6 ft under or life and started the long, long road of detox (months for most meds, years for others) and was finally able to bust. I was almost ready to be satisfied with how things were after detox; hit frequency had come way down, O2 was working again, dozens of side effects fading and disappearing. But since had made up my mind about busting went ahead with it and received over 3 years of 100% PF life. Looking back now, that makes no sense, I had never had a 3 year break even when starting as episodic.

Now that CH has returned, during this year for an example, when I get hit at night I don't always bother to get up. I wait. If I need to get up, low flow O2 will deal with everything in few minutes. I even aborted with Liquorice Root only for long time. For me, this is an astonishing evolution from attacks which always lasted for hours during which time I was completely incapacitated (kips 9-10) to something that bothers a bit.

When I reached PF I became much more active in patient communities. I have spent and will spend majority of my time in our finnish groups and never have I been more sure about the effect of prescriptives on evolution of cluster headaches than I am now. Of course there are wildcards, people who differ from majority but my cautious estimate would be something like 90% are affected in a bad way by the prescriptives.

I am overjoyed seeing people have even more wonderful results than me just in the detox period. It's just a scary thought for most. We have countless stories of how the evolution have been able to change vice versa, from going worse to getting better. Shorter to non existent cycles. And I am of course talking about all the other treatments than the official, prescription medication treatments. Out of all the members in our groups, I do not know a single one who has had success with pharmaceuticals (without a cost). I'm talking about long periods of time about everything in this post, 10+ years.

I'd love to have the wit or even connections to start taking all these information up from people and getting something out of it all. Maybe some day (we have some projects thought up).

The only thing I can imagine that can be distorting the information available for me in recent years is the nature of our group, we are very solution centered and (can't think of a better word) filled with hope. So people who embrace their CH as their fate or feel there is nothing in this earth that can help them or at least will never try, would not come into our groups or if they do, they don't stick around.

This evolution "ability" or potential triggered by certain pharmaceuticals is in my opinion one of the most over-looked aspects of clusters. I love all and any discussion about this and sorry for this long preachy rant, last cup of coffee I swear.

Be well, ya'll

:D

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I love this thread, honestly. These are the types of discussions we should have as a patient community. We all have it, now what IS it?

Alleyoop, thanks for the book suggestions. I have put them on my list. ANother one I'll add, it's entertaining as hell and it's a must for anybody interested in brain science:  "The Tale of the Dueling Neurosurgeons" by Sam Kean. It's like a PhD-level education in neurology, but told through stories of people throughout history who have suffered strange and specific brain injuries. Really an awesome read.

Anyway, I think the main point any of us adventurous types have to consider: CH is not a physical disease. If it were, it would show up on an MRI, CT, or have a marker in the blood, spinal fluid, etc. "It" isn't something we can cut out with a scalpel. So, let's start looking deeper. Whether it's stress response, emotional disorders, an endocrine problem, etc. . .we have some treatments that are good, that treat the physical part (serotonin flood, immune reactions). Let's keep pressing to find treatments that are GREAT, that treat the x-factor.

And Tony, chill out with the coffee, brother!

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CH is not a physical disease. If it were, it would show up on an MRI, CT, or have a marker in the blood, spinal fluid, etc.

But CH does "show up" in the hypothalamus in most studies. (e.g., http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0057896; http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2898%2902470-2/fulltext; http://www.neurology.org/content/55/9/1328). 

And if you don't think the hypothalamus is involved in a causative way (but just, as you and Tony seem to me to be suggesting, as a response to emotional/psychological factors), you'd have a hard time, I think, explaining a very distinctive characteristic of CH: it's seasonal/daily regularity in most people.  It would seem very strange (to me) if "stress response, emotional disorders" could explain this regularity.  That would be a whole lot of people whose "bodies say no" in response to, e.g., an equinox, solstice, or time of night.  (I'm not sure why you include "an endocrine problem" along with "stress response" and "emotional disorders," because an "endocrine problem" is a physiological thing.)

I have no doubt of, and can recount from personal experience, ways in which stress/emotional disorders might exacerbate or even cause physical symptoms. I also know, from personal experience, that just because something cannot currently be explained it doesn't mean that stress/emotional disorders are causing it.  As I say, I could go into considerable detail here.

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Also good points. All three of those studies, and especially the 2nd and 3rd, identify activation/abnormalities in the hypothalamus DURING AN ATTACK, even in the third where they induced a "mild NTG headache" in episodics who were out of cycle. An attack is an attack. So in my opinion, saying there is unusual hypothalmic activity during an attack is like saying we experience lacrimation during an attack. Of course we do. Show me a measurable difference in the hypothalmi of CHers vs. non-CHers, and I'll start to believe that there is a physical cause. And then we can laser that sucker out and be done with it.   :)

I also think those seasonal changes induce exactly thy type of stress that Tony and I are referring to. Whether it's left over from our genetic ancestors (migratory season, hibernation season, mating season) or more modern (turning the damn clocks back, driving to work in the dark, dreading the cold of winter), it's there.

I wonder what would happen if we took a small sample of cluster headache patients and treated them solely for mental/emotional problems? If we addressed the root cause and also prescribed medications designed to repair the frazzled neural circuits in the brain, and not just suppress pain symptoms. It would be interesting to find out. 

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I also think those seasonal changes induce exactly thy type of stress that Tony and I are referring to. Whether it's left over from our genetic ancestors (migratory season, hibernation season, mating season) or more modern (turning the damn clocks back, driving to work in the dark, dreading the cold of winter), it's there.

If you posit that people with CH are among the many, many, many millions -- if not billions -- of people who would be stressed by the things you list (which still don't explain daily regularities in attacks, as opposed to seasonal ones), you still need some physical mechanism that turns those people's stress specifically into CH, don't you?  And if those deeply embedded stressors and triggers are so powerfully causative of physical manifestations, wouldn’t more conditions manifest with the same kind of “clockwork” regularity? (A regularity that is tracked by the hypothalamus.)

I wonder what would happen if we took a small sample of cluster headache patients and treated them solely for mental/emotional problems? If we addressed the root cause and also prescribed medications designed to repair the frazzled neural circuits in the brain, and not just suppress pain symptoms.
FWIW, my friend’s new “miracle-cure” antidepressant (I’ve mentioned this before--very fast results against intractable depression; virtually no observed side effects in extensive clinical trials), which will come to market in 2015 or 2016, works precisely by “repair[ing] frazzled neural circuits in the brain.” It was first developed as a way of enhancing learning. It targets NMDA receptors, as does ketamine, an effective anti-CH medication, without ketamine’s side effects. It also treats neuropathic pain, though it hasn’t been clinically tested for that. I keep hoping that maybe this will significantly help people with CH, both emotionally/psychologically, as you discuss, and mechanically/physiologically. (http://naurex.com/programs/glyx-13;  http://en.wikipedia.org/wiki/GLYX-13) (I say it "works precisely by" repairing that circuitry, but in fact no one, including him, knows why it works, as opposed to what it does.)
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Also good points. All three of those studies, and especially the 2nd and 3rd, identify activation/abnormalities in the hypothalamus DURING AN ATTACK, even in the third where they induced a "mild NTG headache" in episodics who were out of cycle. An attack is an attack. So in my opinion, saying there is unusual hypothalmic activity during an attack is like saying we experience lacrimation during an attack. Of course we do. Show me a measurable difference in the hypothalmi of CHers vs. non-CHers, and I'll start to believe that there is a physical cause. And then we can laser that sucker out and be done with it.   :)

...or for other reasons hypothalamus just happens to be the affected part ("in the line of fire") and since it is our internal clock the pain manifestations happen scheduled by it. I am recalling Genser suggested something like this when describing the "inside out" and "outside in" triggering of our attacks in episodics vs. chronics

I wonder what would happen if we took a small sample of cluster headache patients and treated them solely for mental/emotional problems? If we addressed the root cause and also prescribed medications designed to repair the frazzled neural circuits in the brain, and not just suppress pain symptoms. It would be interesting to find out. 

I have thought of this too. If there would be a chance for this kind of treatment to affect anyone's CH I think it might have to be really deep, similar to what we are doing right now, fast-forward-psychotherapy with psychedelics. But it would be super interesting.

Questionnaire to those fortunate old timers whose CH has disappeared at certain age would be interesting as well, some interviews in Gabor Maté kind of way to let the patients speak and maybe find something in their stories.

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I think we need something physical in the birth of CH pie chart as well, be it just a gene or for some reason funked up hypothalamus but in last few years I have started to think more and more that the emotional/mental part may have such a role that it's almost ridiculous how overlooked it is. Or little discussed. But totally loving this thread as well !

:)

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IM still sticking with the Hypothalmus lights up in response to the pain but is not the cause. My sons clusters are never now the same time of year but began in the fall and spring .. now they are in the summer ?? they seem to be scattered all over the map.  I still believe it to be physical .. but WHAT the physical is I don't know.  I will mention the test where in they trigger cluster headaches by having participants inhale nitro-glycerin.  Maybe something happens where you live that is seasonal that gets inhaled .. ie the annual front lawn burning of the leaves like they do back east .. or that paper plant that spews pollutants in the air twice a year .. or something that blooms in your area.  I really do believe that the fireworks smoke in the air in my area this july triggered my sons Ch's ,,, he had the same reaction last July as well .. so since its a moving target and not equinox or any season related for him I think there is an environmental trigger.

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This is an incredible discussion! ok So Lt and Tony..yall are saying the hypothalamus activity is more of a response and symptom than a cause? Interesting.  And if it would help I would be more than happy to volunteer for any type of psychological study anyone wishes to do...I will volunteer for ANY type of experiments that ones more educated in the sciences than I want to try,  hell I would eat a frickin dog turd if I thought it would help us, all in the name of science of course. :D

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