CHfather

Mr. J, Where I come from, it's not considered very nice to make an old man cry on Thanksgiving. But thank you. When I first came here, almost exactly four years ago, I received advice and support within two weeks from the following people, and more: alleyoop, Bejeeber, tingeling, Bonkers, Hipshot, Jsmacks, agentorange, TakinitEZ, clustermom13, Anne-Marie, Cassidy, Giuseppi, thebb, Brew, and Kaboom. Bob Wold invited me to his house to talk, an occasion I'll never forget. If it wasn't for TommyD's files, I would have been much more lost than I was. Some, or even many, of those screen names have no meaning to some of you who might be reading this, and for others of us, they are dear friends who just have gone on to other things, who we still keep in out thoughts. Subsequent to that, there have been probably a hundred people, some still here and some also gone on to other things, whose advice or experience has helped me/us in one way or another. Some wonderful angels have reached out in times of need. Dr. Sewell, RIP, was always there when I had a question. Guess I'm just sayin', first of all, thank you all so much, and maybe secondly that as individuals, some of us come and stay and some of us come and go, but there's a life in the community that is so much greater than any of the individuals in it. As much as I long for the day when this community no longer needs to exist, when this site is boarded up and out of business and just a relic of a tragic past, it sure is a treasure to be part of it as long as it's here.

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).)

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. 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.

Something like this has been mentioned before, I think as "abdominal migraine." http://www.ncbi.nlm.nih.gov/pubmed/25039367 >>>Cluster headache (CH) and irritable bowel syndrome (IBS) are pain disorders that possess relationships with circadian rhythms. However, they have not been compared to assess similarities that could yield pathophysiologic insights. A young male adult with periodic episodes of abdominal pain highly reminiscent of CH is described. Since childhood, he experienced severe attacks featuring excruciating, abdominal pain accompanied by prominent restlessness, lasting 30-120 minutes, occurring in the evening and in discrete 2- to 8-week periods, interspersed with remissions where typical triggers did not lead to attacks. Although all of the patient's symptoms fell within the spectrum of IBS, the semiology was highly evocative of CH, based on the attack duration, restlessness, periodicity, and selective vulnerability to particular triggers only during attack periods. A subset of patients thought to have IBS may feature similar attack profiles and could suggest the importance of the hypothalamus in its pathophysiology, akin to CH. <<<

Fab, This is a pretty good discussion, and this guy's book, Hardwiring Happiness, is great -- simple and useful. http://www.noetic.org/noetic/issue-nine-april/self-directed-neuroplasticity/

We talked in this thread about meditation (and mindfulness exercise), and I think it was also in this thread that we talked a little about neuroplasticity: that the brain changes shape in response to what we ask from it. So here's a recent report tying the two together: A Harvard study that shows significant changes in brain structure from just eight weeks of meditation/mindfulness practice for 27 minutes a day. The part of the brain associated with self-awareness and compassion (hippocampus) grew; the part associated with fearfulness (amydala) got smaller. (Of course, if this much happened in 8 weeks, then something has to have happened after one week, and even after one session, and even during one session.) http://www.feelguide.com/2014/11/19/harvard-unveils-mri-study-proving-meditation-literally-rebuilds-the-brains-gray-matter-in-8-weeks/ And just for the heck of it, unrelated to anything, here is something I was just writing yesterday, related to the field called "embodied cognition." I just think it (like so much other brain stuff) is fascinating. >>Someone who holds a cup with a warm beverage in it for a couple of minutes—just holding the cup, not drinking from it—will be more inclined to think well of the next person they meet (that is, they will feel more "warmly" toward that person); while someone holding a cup with a cold beverage in it will be inclined to think more negatively of the next person they meet. Someone holding a heavier clipboard while answering questions will judge the subject matter of the questions to be more important (“weightier”) than someone who is holding a lighter clipboard.<< Here, if you're interested, is a video about the first thing: https://www.youtube.com/watch?v=i1OVhlRpwJc . And here's a longer article on the general topic: http://www.slate.com/articles/health_and_science/science/2014/11/embodied_cognition_metaphors_about_the_physical_world_help_us_reason.html Â

Maybe I haven't been paying close enough attention, but I don't know what you mean by this. Can you explain briefly?

didg, If you want to get really deep in the hole, take a look at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3857910/#R29, the part headed "weather" (and maybe the one after it, on "electromagnetic fields"). Most of this is about migraine. Many people with migraine, like many people with CH, are convinced that barometric pressure is a kind of trigger. I don't doubt for a second that for CH there's at least some truth to that--too many people have reported it for it not to have some kind of validity. And what about the way that flying triggers CH for so many people? (Is it also considered a migraine trigger? I don't know.) But it appears the jury is out about what specific atmospheric changes affect migraine/CH, and whether they have that effect independently, or only in combination with other factors. I guess people find this valuable to study not just to know if there's a connection of some sort, but also because you can learn something from triggers about what's going on physiologically during a migraine or CH attack. Here are a few more things: Founder of the New York Headache Center, who has a whole blog section about CH: >> It does not appear that barometric pressure or allergies are responsible for triggering cluster headaches.<< http://www.nyheadache.com/blog/category/cluster-headaches More about this one in a minute. Big headache guy at the Cleveland Clinic: >>Results are inconsistent regarding the effect of barometric pressure on non-migraine headaches. Surprisingly, recent studies show no effect of barometric pressure on migraine headaches, but there really aren’t enough studies to say for certain.<< https://my.clevelandclinic.org/health/transcripts/krause_headaches_and_migraines Here's more from the NY Headache Center guy: (who I don’t like, for reasons that will be obvious if you look at his blog, but who does seem to collecting possibly interesting data). This is from late last month: >>>Looking at our data, we have found that in some years many cluster patients developed their attacks in August, another year, in November, and this year, it has been September – October. This year, we are also seeing many patients whose cluster headaches are not responding to usual treatments. It does not appear that barometric pressure or allergies are responsible for triggering cluster headaches. One unsubstantiated theory is that solar activity is responsible for bringing on cluster headaches. This report in the Wall Street Journal indicates that we are currently going through a period of an unusually intense solar activity. Perhaps this is why some of our cluster patients are having unusually severe headaches.<<< Then there is the recent study in which they dramatically lowered barometric pressure to see the results on the brains and trigeminal neurons of rats. Here's what's been said about it (basically, no causation): >>Messlinger and colleagues describe the experimental conditions they created to evaluate the effect of low atmospheric pressure in a climate controlled room. They investigated whether rapid (8 min) lowering of the ambient pressure (by 40 hPa) to an extremely low level (comparable to that of a typhoon) induces neuronal activity in the trigeminal nucleus caudalis in rats. Their study revealed that by only changing barometric pressure, there was no triggering of trigeminovascular neurons with receptive fields from dura mater or from both dura mater and cornea. Even the prior sensitization by a nitric oxide donor did not alter their response to low atmospheric pressure. The activation of neurons with receptive fields from dura mater are critical since their activation results in neurogenic inflammation characterized by vasodilation, blood flow increase and plasma protein extravasation in the dura mater. All this is a hallmark of the headache phase of migraine.<< http://www.headachejournal.org/view/0/HeadacheExtra.html This author goes on to suggest (as best as I can understand it) that it's not the change in pressure that matters, but the activation of Saharan dust (back to your something-inhaled theory). Here's a meta-analysis from 2011: >>We conclude that the available data suggest low atmospheric pressure unaccompanied by other factors does not trigger migraine." http://www.readcube.com/articles/10.1111/j.1526-4610.2011.01996.x It's a deep hole, once you climb into it. There's a lot more out there.

++++

RedBull is just about the weakest of the energy drinks/shots. If the occasion arises again, you might try 6 Hour Power or even 5 Hour Energy (shots). Check caffeine levels. Just to be clear, with oxygen you can sit up and pace around (with a longer tube). There might come a day when you want it, and if it's free through your NHS, I'd recommend persisting in getting it now.

Well, you've got to change this! Toot sweet, as they say in Canada and Nashville. Print these out and bring them to your doctor: http://jama.jamanetwork.com/article.aspx?articleid=185035 http://www.guideline.gov/content.aspx?id=34898 About halfway down this page there's a table. Look under "attack treatment."  Are these oral triptans? The injectable kind typically work pretty well. (I see in another post you say that busting has worked well for you, so I'll mention that these triptans do interfere with busting (or seem to, anyway). You've tried an energy shot or energy drink to quell your attacks?

Glad this worked so well for you, and thanks for sharing. They're very secretive about the magic ingredients at the Ausanil website, but it's basically something that is very familiar to many people with CH -- it's a capsaicin spray (apparently with some ginger added). It's quite unlikely that this prevented any attacks. It just temporarily desensitizes the trigeminal nerve. But who knows -- maybe it did have some kind of special effect for you. Not sure what medications you have tried, but if you don't have oxygen, I think you'll be a whole lot happier in the long run using that to abort. (See the "Oxygen Page" under the black and white MENU tab on the left side of the page.)

You can do morning glories, or some equivalent, again. See https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974. (Most people here prefer RC seeds.) But you will have to be off the migraine meds for five days (I'm not positive about the fioricet: Don't know what the butalbital does to busting). Is the imitrex in tablet form or injection? You'll have to be off that to bust, in any case . . . I'm just curious with regard to the CH or CH-like attacks you're having (those bad ones definitely sound like CH). The fioricet would definitely do nothing for CH, but imitrex injections usually help. Please look at the other numbered files in the area (ClusterBuster Files) where the file I linked you to is located. #6 is about interactions with medications. #1 and #3 are important. Some folks here have had very good success treating migraines with busting. I don't know anything about racetams.

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.)

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.

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?

:) :) :) :) :) :) :) :) :) :) :) :)

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!

HB, The "vitamin D3" regimen that has helped people has a lot of stuff in it -- including calcium carbonate -- beyond just D vitamins. It's here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

HB, Melatonin? Some folks find that a strong dose at bedtime helps. Starting 6-10 mg. and working up. (Did you see my reply in another thread to your question about energy shots? It got kind of submerged by other posts pretty quickly.) More importantly, did you notice in the D3 thing this instruction about separating the calcium from your verapamil: >>>If you are presently taking verapamil as a cluster headache preventative or for a heart condition, studies have shown that after repetitive dosing with verapamil, its serum half-life can be in a range from 4.5 to 12 hours. Other studies indicated calcium supplements interfere with calcium channel blockers like verapamil. Calcium gluconate is also used to treat reactions to oral verapamil. Accordingly, in order to minimize a possible interaction with calcium that may limit verapamil effectiveness, separate the verapamil and calcium doses by at least 8 to 12 hours. Discus this regimen with your PCP, neurologist, or cardiologist in order to work out an optimum dosing schedule.<<<

My first computer had no hard drive, two 5.25" floppy drives, 256K of RAM, and a monochrome monitor. That was before there was such a thing as Windows -- you could only do things by typing in your own DOS commands. No internet, of course, but you could send messages, if you could afford it, by sticking your phone into an acoustic coupler and waiting a few hours to see whether it worked.

NOW you tell me!!!! Seems like in Windows, both "Copy image location" and "Copy link location" work. (I always figured you for one of those hoity-toity Apple types, Jeebs.)

In terms of shots, Jeebs likes 6 Hour Power, and there are folks who like Monster Hitman Sniper, which is loaded with caffeine. 5 Hour Energy has less caff than those two, but more than (or at least as much as) a RedBull. 5 Hour Energy Extra Strength has as much as the Sniper one. Here's one list (which doesn't include the first two I mentioned): http://www.consumerreports.org/cro/magazine/2012/12/the-buzz-on-energy-drink-caffeine/index.htm Be sure you're also getting taurine in whatever you buy; that's generally believed to be what makes the difference in effectiveness (for many people) between energy shots/drinks and just plain coffee.

TE, the little globe icon at the top left of the area where you compose a message is for inserting hyperlinks. Find the URL you want to include, right click on it and select "copy," and in your post, click on that globe icon, right click, and paste. (All of this is of course for Windows computers. I don't know anything about Apples.) Here's how I post images, though I figure there must be an easier way . . . Upload the image to your computer (into your "My Pictures" folder for example) -- to do that, click on the image you want and then select "save image as." Then, from my computer I upload it into the free photo storage website, www.photobucket.com. It will then be in your "Library" at photobucket. Click on Library, then click on the image you want to post. When you do that, the image will appear and on the right side of the page you'll see a column headed "Share Links." Put your cursor into the box to the right of the bottom item, IMG. The cursor turns into a pointing finger. Left click. The box briefly turns yellow, and you'll see a message in the box that says "Copied." All you have to do now is go to the post you're composing, right click, and select paste. Voila!

There are reasons why we call you Fab (this being only one of those reasons). Learn to upload images and we'll have to rename this place: