CHfather

Thank's, w'man. Interesting! I see alleyoop is the first person thanked at the end here, along with Bob Wold. The only other name I recognize there is Pinky. I wonder if the author (Peter May?) is possibly posting among us even now? [i see that the link doesn't carry forward above. Here it is again: https://www.clusterheadaches.com/cb/yabbfiles/Attachments/CH__Dreaming___Neurogenesis.pdf] Slightly related, this study released today about scientists finding a way to reduce memory loss caused by sleep deprivation. The kind of thing that gives me hope that the brain-centered aspects of CH might one day be understood and treated. http://www.newsworks.org/index.php/health-science/item/75644-penn-scientists-find-way-to-prevent-memory-loss-after-sleep-deprivation- (For those of you who doubted a study I reported earlier because it was based on mice -- you know who you are! > -- most brain studies in mice have very good carryover into humans. But of course the huge issues are whether anyone is interested and is financially able to carry out the next-level studies, and ultimately whether anyone sees enough potential financial gain to develop something commercially.)

I've asked this question before, but I'm asking again. I guess maybe it's principally a question for the moderators (who, by the way, are doing a great job!!!). The count at this moment shows that there have been 168 guests at the board today, and 25 members. Is there some misleading phenomenon behind those numbers, or have there really been more or less 165 people showing up as unregistered visitors to the site? If there are a lot of guests every day, are we serving them as well as we could? They can't read the two most informative areas of the board (Share Your Busting Stories and ClusterBuster Files). I guess they could just sign up if they really want to do that, but do they really get enough of a sense of what's going on here to want to sign up? Do they sign up and become members? Anyway, my larger questions are (1) whether we're serving guests as we well as we could, and (2) the BIG question about what "protection" is actually achieved by requiring membership in order to see SYBS and CB Files. I don't know the answer to this question. It feels to me like anyone who wanted to see the posts here for any "snooping" purposes could just register and then do that. I'm guessing we're not protecting young people from the site's contents, since we recently had a 16-year-old show up at SYBS, and I assume lying about one's age is easy enough to do in any event. I'm not saying that any policies should be changed, because I don't know enough about what the policies are or how they are implemented . . . As I said, my main question is just about whether guests are getting what they need when they come here, and, if not, what we could do to be more helpful.

I have really not sat down with her to think through what symptoms she had before she started getting troubling attacks. Unlike a lot of people, her CH came on gradually, with what she thought at first were just unusually painful headaches. It ramped up for her after some dental work unrelated to her "headaches" (that is, not, as with some people with CH, as an attempt to treat her "headaches," just a routine root canal). The first time she talked to me about her "headaches" was at least six or seven years after she had taken the lariam -- but she might have been having them before then. She doesn't really like to talk about her CH. Mostly, the lariam messed with her head psychologically. Compounded by the fact that she was in a very, very different culture and pretty much living by herself there. She was not given much warning about the psychological effects of lariam, so she blamed herself for the problems she was having. Yes, she has vivid dreams, but again, I can't say whether they foretell a CH cycle.

Clever! Others will have more to say about this, and THMH's questions are good ones, but might you consider switching to a different medicine (RC, for example, or LSD) since we have acknowledged often here that CH seems to sometimes, in some people, develop resistance to repeated applications of the same medicine.

Lariam is an anti-malaria drug. My daughter took it when she studied for a year in a third-world country. The effects on her were very, very bad.

Some other folks we've discussed in the past: Lisa Kudrow is the daughter or granddaughter (I never can get it straight) of cluster headache specialist Dr. Lee Kudrow, who himself has CH. The TV celebrity known as the "Millionaire Matchmaker," Patti Stanger, announced on Bravo TV that she has CH. A guy who once was a very good basketball player for the Bulls and other teams, Kendall Gill, was said to have CH. The late film director and producer Frank Capra had CH. Here's how he described one of his attacks: >>"Suddenly a huge phantom bird sank three talons of its angry claws deeply into my head and face and tried to lift me. No warnings, no preliminary signs. Just wham! A massive, killing pain came over my right eye. I clutched my head, stumbled out to the broad lawns and over the hedges to the deserted tennis courts and then, there in the dark, I moaned, I panted. Ballooned my cheeks, blew out short bursts of air, licked my hot lips, wiped tears that poured out of my right eye, and clawed at my head trying to uproot the fiendish talons from their iron grip. One racking hour later the talons let go. The paroxysm eased as suddenly as it had convulsed.<<

Maybe you want to start a new thread in the "Share Your Busting Stories" section about this. I see you've looked at MoxieGirl's guidance for preparing seeds. Can't go wrong following that advice, but let us know what you're planning to do.

http://cep.sagepub.com/content/early/2014/11/13/0333102414557839.abstract Cluster headache and the hypocretin receptor 2 reconsidered: A genetic association study and meta-analysis; Weller C, Wilbrink L, Houwing-Duistermaat J, Koelewijn S, Vijfhuizen L, Haan J, Ferrari M, Terwindt G, van den Maagdenberg A, de Vries B; Cephalalgia (Nov 2014) Â Â BACKGROUND Cluster headache is a severe neurological disorder with a complex genetic background. A missense single nucleotide polymorphism (rs2653349; p.Ile308Val) in the HCRTR2 gene that encodes the hypocretin receptor 2 is the only genetic factor that is reported to be associated with cluster headache in different studies. However, as there are conflicting results between studies, we re-evaluated its role in cluster headache. METHODS We performed a genetic association analysis for rs2653349 in our large Leiden University Cluster headache Analysis (LUCA) program study population. Systematic selection of the literature yielded three additional studies comprising five study populations, which were included in our meta-analysis. Data were extracted according to predefined criteria. RESULTS A total of 575 cluster headache patients from our LUCA study and 874 controls were genotyped for HCRTR2 SNP rs2653349 but no significant association with cluster headache was found (odds ratio 0.91 (95% confidence intervals 0.75-1.10), p[ch8201]=[ch8201]0.319). In contrast, the meta-analysis that included in total 1167 cluster headache cases and 1618 controls from the six study populations, which were part of four different studies, showed association of the single nucleotide polymorphism with cluster headache (random effect odds ratio 0.69 (95% confidence intervals 0.53-0.90), p[ch8201]=[ch8201]0.006). The association became weaker, as the odds ratio increased to 0.80, when the meta-analysis was repeated without the initial single South European study with the largest effect size. CONCLUSIONS Although we did not find evidence for association of rs2653349 in our LUCA study, which is the largest investigated study population thus far, our meta-analysis provides genetic evidence for a role of HCRTR2 in cluster headache. Regardless, we feel that the association should be interpreted with caution as meta-analyses with individual populations that have limited power have diminished validity.<<<

Hope it helps. As I've mentioned, she should also keep her eye on this product, which should become available next year if all goes well, or at the latest in 2016. (Of course, when it becomes commercial it will have a different name.) http://www.nimh.nih.gov/news/science-news/2013/ketamine-cousin-rapidly-lifts-depression-without-side-effects.shtml I have said that I have some (possibly naive) high hopes for this regarding CH treatment, since it's a side-effect-free cousin of ketamine. As I've also mentioned, I've been playing golf many times each year for nearly 20 years with the guy who invented this (Joe Moskal). It's frustrating to me that I can't get him to slip me a few leftover pills to test out for "off-label" use for CH. :-/

From two days ago. Nothing new here, really, but getting more out into the mainstream never can hurt. http://www.nytimes.com/2014/11/30/opinion/sunday/can-mushrooms-treat-depression.html Last paragraphs: >> I experienced a number of small epiphanies — self-realizations actually — but one in particular remained with me. As the drug wore off, I went indoors to take a hot bath. For a moment I thought that might not be a good idea, as bath time is when women in middle age can be very self-critical and unforgiving, and I didn’t want the sight of my waistline to veer me into a bad trip. But while in the tub I envisioned my body as a ship that was taking me through life, and that made it beautiful. I stopped feeling guilty about growing older and regretful about losing my looks. Instead, I felt overwhelming gratitude. It was a tremendous relief that I still feel. Psilocybin could have enormous impact on the lives of many Americans. But at the moment, its Schedule 1 status makes it a difficult drug to study, and only a handful of scientists are engaged in its research. This needs to change. Rescheduling psilocybin won’t make it legal; it will make it easier for research to be conducted, leading to more scientists exploring its potential, while reducing investor concern and allowing for compassionate use provisions. Don’t get me wrong: I’m not suggesting 16-year-olds take magic mushrooms. I’m not suggesting they be used to party at all. What I am advocating for is a mind open to the possibilities of their use to help people in need. Because illiberality doesn’t cure disease; curiosity does.<<<

jimmys, I hope your bust tomorrow pays off for you. Can't think of much that's new in the past year. There's this thread about a new tryptamine option: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1406637555 And I guess we've learned that maybe some things we thought might block busting actually might not. Verapamil seems less counterproductive than once was thought (this discussion has probably been going on for more than a year). Questions have been asked about some other pharmas, but I don't think we're ready to say they don't block busting. I'm probably missing something, but I can't think of more.

In Rozen's study, 49 percent were righties and 44 percent lefties. 3 percent both. I don't know about the other 4 percent. In an earlier, smaller study, it was 60 right, 38 left, and 2 both. When you wrote "righties," my first thought was about handedness, As you probably know, there was a time just a couple of decades ago when it was believed that CH and migraine were proportionally more common among left-handers than right-handers. I think that was shown not to be true (just as it wasn't true, as some believed, that people with hazel eyes were more prone to CH).

spiny, here's an article that answers your question -- and more. http://www.nature.com/news/the-split-brain-a-tale-of-two-halves-1.10213 My favorite part, not directly related to split-brain theory, is about the "interpreter": >>Gazzaniga developed what he calls the interpreter theory to explain why people — including split-brain patients — have a unified sense of self and mental life. It grew out of tasks in which he asked a split-brain person to explain in words, which uses the left hemisphere, an action that had been directed to and carried out only by the right one. “The left hemisphere made up a post hoc answer that fit the situation.” In one of Gazzaniga's favourite examples, he flashed the word 'smile' to a patient's right hemisphere and the word 'face' to the left hemisphere, and asked the patient to draw what he'd seen. “His right hand drew a smiling face,” Gazzaniga recalled. “'Why did you do that?' I asked. He said, 'What do you want, a sad face? Who wants a sad face around?'.” The left-brain interpreter, Gazzaniga says, is what everyone uses to seek explanations for events, triage the barrage of incoming information and construct narratives that help to make sense of the world.<<

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.

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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.)