CHfather

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.) 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.)

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.

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.

 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 Man’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 don’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. There’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

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?

Very nicely done, Jp'.

There are a lot of nice pics at Jeffrey Rowland's Facebook page: https://www.facebook.com/jeffreyrowland/media_set?set=a.10202771127670483.1073741841.1568931597&type=1 And the lovely group one at CB Facebook page: https://www.facebook.com/clusterbusters/photos/a.212157205559821.44197.102168033225406/621289351313269/?type=1&theater

Maybe Dan will see this and speak for himself, but I think what's been working for him is a different kind of block, a facet nerve block (four of them), in his neck, using botox. Sorry if I'm just muddying the waters here. Here's a thread: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1380388743/0

To save folks the trouble of going to Tim's profile to get to his valuable site, here's the link: http://www.cluster-heads.org/en/ Thanks, Tim! I'm looking forward to spending time at your site, and I'm sure others here are, too.

You guys are just making me feel worse and worse about missing the conference! Michael, I'm thrilled that you're here. Thank you so much for all you have already done, and thank you in advance for the support you will be to future visitors to this board. I hope maybe we can continue to help and support you, too.

 Here's some info about that. I assume that if our good friend Dr. McGeeney is excited about it, it's because it might work for CH too. http://migraine.com/pro/calcitonin-gene-related-peptide-cgrp-prevention-migraine-positive-phase-ii-results-two-new-studies/ Since these are both Stage II trials, it might be helpful to have a sense of the trial process. That is described here: http://www.pfizer.com/research/clinical_trials/phases_of_development (I know there are also subsets within the stages (IIa, IIb, etc.).) I am totally just guessing here based on a little experience, and I know others will correct me, but I am estimating that the time from where those drugs are now to the time they come to market (assuming that the tests continue to show effectiveness and safety) would be 18 months - two years. I suppose people with CH would not be eligible to participate in the trials (only people with only migraines). Looking forward to learning more. Thanks, Jeebs!

Formby, there's a lot to deal with there, and a lot of our members are attending our annual conference right now, so you might not get as much of a reply as you otherwise would. As Fab says, it's sad but true that your husband's story is like a compilation of most stories of people with CH. And yours as a supporter, too (I'm a supporter myself). So many people here have been through all that he's been through, and are much, much better off today than they once were. That is . . . There is hope! Are you saying that he's currently taking all those meds (neurontin, baclofen, topirimate, +, +, +)? That seems nuts. And, as Fabac wisely observed, no injectable Imitrex??? Now, it might be that on your trip to SHANDS a doctor might at least sort that out. I don't know what to say about all those meds -- I feel kind of flabbergasted, and if he's taking all that crap (and even that doesn't seem to be working), it's hard to know what to recommend. It seems to me that the first thing you want to do is try to get his oxygen working well again. Because it worked before, I'm assuming that he has a standard system -- a flow rate of 15 liters per minute and a non-rebreather mask. Is that correct? Do they not give him oxygen at the ER? (I'm just wondering whether it works better there, if they do.) There are two (or maybe three) things he might try right away for his oxygen system: (1) try drinking an energy shot (like 5 Hour Energy) or an energy drink (like Monster or RedBull) at the first sign of an attack, just before getting on the O2. Frankly, I'm even a little nervous about recommending this caffeine jolt because of all the meds he's on, but it does help a lot of people. (2) Remove the bag from his mask and replace it with a turkey roasting bag or an unscented kitchen garbage bag. That will allow him to breathe more deeply and quickly without having to wait for the standard bag to fill. (3) Consider trying different breathing strategies. For example, hold the air in the lungs for a couple of seconds before exhaling; look down toward the feet while doing O2; consider hyperventilating. You/he should read the ClusterBusters Oxygen Page under the black and white MENU tab on the left side of the page. It's premature to talk about "busting" -- using substances like "magic mushrooms" to treat CH. He would have to be off many of his medications for at least five days before doing any busting, and that doesn't seem very feasible right now. So I will just say two things about busting: (1) There's is practically no one here who likes using psychedelics. They do it for the same reason your husband would -- because it often works and it's better than CH pain and the side effects of standard CH drugs; (2) There are busting substances he could try that would be very unlikely to cause him any kind of serious "trip" (or any trip at all), but that still work very well. So this might all be worth considering when he's ready, and when he's able to get off the drugs. (Yes, people do that, even people in situations similar to his. But having effective oxygen is critical for that.) Two more things: (1) To learn more about busting, go to the numbered files in the ClusterBuster Files section of this board; (2) You might want to also visit the site www.clusterheadaches.com. That site is populated with a lot of very helpful people who typically use standard CH meds rather than busting. You might find some valuable thoughts there. We're here and happy to help as much as we can. Like I say, folks here have been where he is or where you are. There is hope.

Rozen's 2011 study found that 55% of people with CH have considered suicide. 2% of the people in his study had attempted it. http://www.researchgate.net/publication/51792884_Cluster_headache_in_the_United_States_of_America_demographics_clinical_characteristics_triggers_suicidality_and_personal_burden The national suicide rate (not attempts; actual suicides) in 2011 was about .01% https://www.afsp.org/news-events/in-the-news/new-data-issued-by-the-cdc-releases-2011-suicide-statistics-showing-continued-rise-in-suicide-rate

Funny post, Fab (and sad -- and happy, the PF part!). A while ago, ClusterBusters put together a brochure, "20 Facts About CH," that can be pretty helpful -- IF you can get people to set aside their preconceptions just for a few moments, and IF you can get people to actually sit down and take the 6 minutes it might take to read it. I don't know where this is available, but I have a copy here, so I'm attaching it. I think there's another product that ClusterBusters has been working on, called "Living with Cluster Headaches," that I think might be ready for the conference this week. It has 28 first-person accounts of what it's like to live with CH, or to have a loved one with CH. 20_Facts_brochure_8-24-13.pdf

Welcome, Luigi. Your English is excellent indeed. You can read about the method that we call "busting" by going to the ClusterBuster Files section of the board and reading the files there that begin with numbers. Here's a link to that section: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?board=files You would particularly want to read files #1 and #3, but many of the others will be valuable, too. Of course, you should ask questions and check back with us. There's even a doctor from Italy who is often here with very good advice! 8 sumatriptan injections a day is not good!!! (I'm sure you know that.) At least, you might want to use smaller doses. You can read here about how to do that: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1361807077 You might be able to continue taking verapamil if you decide to bust, but you probably will not be successful if you continue using the sumatriptan injections. Having a better oxygen system might help you stay off the sumatriptan. You might be able to get better results from your oxygen if you change your system. Please read the "Oxygen Page" under the black and white MENU tab at the left side of the page. Also . . . have you tried drinking an "energy drink" or "energy shot" at the first sign of an attack (in the US, those have names like 5 Hour Energy, RedBull, and Monster). That helps a lot of people. The vitamin D3 approach also has helped a lot of people. You can read about that here. https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

Melody, just to have terms clear, what we mean here by a "blocker" is something that prevents busting from being effective (not something that "blocks" cluster headaches from occurring). So it isn't just that if you take a blocker along with a psychedelic you wouldn't know which was working -- you could be pretty sure that the psychedelic isn't working, because it's being blocked. To add a little to what Denny said about lithium, here's what is written in the file, "Playing Well Together," that he suggests you should look at. It could be that more is known now about the interaction between lithium and busting, but from this it sounds like something to be wary of. >>>Lithium People taking lithium, whether it is for preventing cluster headaches or for some other reason (it is often prescribed for people with bipolar affective disorder - see below for more on bipolar disorder). Anecdotal reports suggest that lithium can greatly potentiate the effects of LSD or mushrooms, and that it can produce very unpleasant feelings. An examination of a number of reports suggested that lithium can either increase or decrease effects. The combination of lithium and tryptamines may even produce episodes that seem like, and that perhaps are, epileptic seizures. If people are taking lithium for treating cluster headaches and it is not working, they may want to talk with their doctor about not taking it any more before trying mushrooms or LSD. If people are taking lithium for bipolar affective disorder, they probably should continue taking lithium, and they should avoid taking tryptamines for cluster headaches. <<<

timmyy, There are quite a few people here who have had success with mushrooms while still taking verapamil. How much are you taking? If it's a lot, you might have better success with busting if you can cut back. Lithium you have to withdraw from gradually, and you should do that with a doctor's supervision. No one really knows the minimum time to be off medicines before taking mushrooms. Some have tried and been successful after four days. I don't think anyone would recommend less than four days. Most would say that it's much better to wait the standard five days.

Lt2, since it's legal to buy and possess 5-MeO-DALT, I don't feel uncomfortable asking this, though you might not feel comfortable answering it. par says s/he bought the stuff here: https://www.brc-finechemicals.com/5-meo-dalt.html But that site seems only to ship within Europe. Are you willing/able to say where the testers you mention got theirs?

It's very late for me to putting in this two-cents-worth, but I wonder whether there would be any way to create some kind of organized discussion about obtaining SSI Disability status. Maybe there's not much to say, and maybe there's not much interest, but it is a topic we've discussed here at the board from time to time, and I'm curious about stories of success (and non-success) in getting disability.

Yay!!!!!!!!!!!

didg, to save you the trouble of doing this googling yourself . . . http://www.ncbi.nlm.nih.gov/pubmed/15658944 http://www.electrocoremedical.com/clinical-trial-shows-electrocores-non-invasive-vagus-nerve-stimulation-therapy-is-effective-in-reducing-cluster-headaches (these foks were at the last CB conference and will be at this one, too) http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=5&ved=0CEUQFjAE&url=http%3A%2F%2Fwww.thejournalofheadacheandpain.com%2Fcontent%2Fpdf%2F1129-2377-14-S1-P231.pdf&ei=3_cAVL-ZMciBygS1iIDwBg&usg=AFQjCNFg6-DZochCQO0OksSuughRumrrSA&sig2=8kDvfEjZ69-QrRMxZ9l02g&bvm=bv.74115972,d.aWw (an earlier paper related to the previous one) I'd be surprised if the GERD tree itself is worth barkin' up (too many people with CH don't report GERD as something common to them; way too many people with GERD don't have CH), but your wise brain might just find something!! (And if I were you, I guess I'd have your son see a doctor about his reflux, because it sounds like it's too darn frequent, which could either indicate that something else is wrong, or can eventually lead to something he would very much want to avoid, like http://www.webmd.com/heartburn-gerd/guide/barretts-esophagus-symptoms-causes-and-treatments.

That would be September 2, I'm pretty sure.

Just a note about melatonin, with apologies for maybe overcomplicating this topic. It's not very "bio-available" (doesn't get into your system very quickly or very thoroughly). Some have had good success with a chewable brand (available at Trader Joe's, among other places) that comes in very small dosages (like .5 mg); I think others will say the time-release version is also good. So there are a lot of variables in kind and dosage. Also -- While some people have good results with melatonin (which, as you say, stands to reason given melatonin depletion observed in CH patients), a few others have found that it seems to make their CH worse. (I'd say -- though I could be very wrong about this -- that for a lot of people there's no difference. But they might not be pushing the levels as high as might help.) These things are so tricky to get specific about because there are so many other factors. Just sayin' -- if you feel like things get worse, it could be the melatonin.

ClusterBuster founder Bob Wold says the folks who developed this device will be at this year's conference.

Fab', How much melatonin are you taking? What form (chewable, under-the-tongue, plain ol' pill . . .)? Did you get your oxygen?