CHfather

The Nat Geo international TV listings are here: http://www.nationalgeographic.com/siteindex/television.html It's part of the series called "Drugs, Inc." I was able to figure out when it would be on in some places (Feb 13 in the Netherlands, for example), but others stumped me. (Seems like the schedule for Norway is only available through January 31, and this episode isn't on before that. It could be that they are considering banning the program out of fear that Dan's extreme hotness might cause all eligible Norwegians to immediately apply to move to Texas.)

Although there are some serious vegetarians here who nonetheless have CH, there also have been many people who have reported that what they eat affects their CH. Here's one person who experimented a lot: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1301882443 So I'd say you should try it since you have noticed that correlation. In my conversations with random people I meet about severe head pain, I have now met two who have gone to actual live-in centers where they test the elimination of certain foods to see if there's any effect on head pain (this is probably not CH pain, but you're talking about migraines in your post). One of them has become almost completely head-pain free by eliminating most meats. (One general principle of the D3 regimen is that it shifts your body's pH from acidic to alkaline. Red meat tends to be very acid-producing. Not vouching for this (although it makes sense to me and the acid/alkaline thing is a widely expressed homeopathic principle), but maybe worth considering. Here's more on the general acid/alkaline topic: http://www.naturalhealthschool.com/acid-alkaline.html

Sanni, why don't you contact Les and ask him about this? It seems like you were taking rather small doses, since you were taking 5-10 drops 3x/day, and his recommendation for the initial dosage is about 30 drops 3x/day. And while he doesn't like verapamil, it might not be completely ruled out if you are careful (for example, getting potassium and water and monitoring your blood pressure). I am just guessing here, but it seems possible to me that you could use some from time to time since since it helps you so much, and Les would be the person to ask. You can contact Les by a Personal Message from here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?action=viewprofile;username=6960765A62606B766077050 If you don't get a response, PM me and I'll give you another way to reach Les.

When the old-time baseball pitcher Dizzy Dean was hit in the head by a line drive and knocked out, the medical-report headline in the paper the next day said "X-Ray of Dean's Head Reveals Nothing."

Sanni, below is some information from Les Genser about what to look for in a licorice root tincture. Since there are some concerns (which you seem to be aware of) regarding taking too much licorice root tincture for too long, or in combination with some other meds, you might want to look at this file: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 Note that down below there's a website in Europe from which Genser suggests ordering the correct tincture: www.organic-herbal-remedies.co.uk/ Here's what Genser says (as summarized by me) about the tincture: >>>Genser wrote: “Use ONLY a whole plant extract (tincture) of licorice root (Glycyrrhiza glabra). Good high-quality tincture is available at any health food store and many pharmacies—Whole Foods, Mom’s, etc. Get the best one you can find; it should be about $20 for 2 oz. Label should say 1:5 (that’s the potency) and 30%-40% alcohol by volume. Do NOT use teas, candy (which isn’t real licorice anyway, its anise) or anything other than a whole plant extract. This is very important.” Later in the thread, he added: “DGL licorice tinctures, that is those with the glycyrrhizin removed will NOT work. The phytoestrogens which I believe to be the effective components here are compounds called flavonoids, and are derivatives of glycyrrhizin. For similar reasons, I suspect that glycerates, tinctures in which the alcohol has been replaced with glycerin, will also NOT work. My reasoning here is that the alcohol is heated off a regular tincture to make the glycerate, and I believe the heat is damaging or inactivating in some way those same flavonoids.” He emphasized: “DO NOT use powdered prepackaged capsules, pills, or anything other than a tincture…. Powdered herbs lose their potency VERY quickly.” To order by mail in the US if a store is not nearby, he suggested Mountain Rose Herbs (“all their stuff is organic and small batch and they make a 1:4 whole root tincture. It’s also priced decently, 9 bucks a fl. oz.”); Gaia Herbs; and Terrafirma. In Europe, he suggested the website http://www.organic-herbal-remedies.co.uk/ He also provided instruction for making one’s own tincture, which can be found at the thread (http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1293084254). A ClusterBusters member asked Genser about a different formulation—“It varies slightly from yours. Mine says: Herb strength ratio 1:3, alc 45-55% by volume. Dosage is 30-60 drops, 2-3 times daily. It costs about the same as yours. Whaddaya think?” Genser replied, “That should work fine. The 1:3 means it slightly more concentrated than the one I made.<<<

thankfully, they seem to have covered the CH story sensibly and sympathetically, at least from the clip -- which, by the way, is now posted by nat geo at youtube, where it's been seen by close to 13,000 people in less than two days: http://www.youtube.com/watch?v=Njb4H1x8oSg i suppose they have to sensationalize the promos to get viewers. the first two episodes in this nat geo "drugs, inc." series this year, "hash" and "crack," got over 4 million viewers. so, people will learn and people will be helped. thanks again, dan, lee ann, and family.

yes.

There's a schedule here: http://channel.nationalgeographic.com/channel/schedule/ngc/ Set date to 1/15, and the blue rectangle top right shows the times for different zones. I hadn't really looked at the structure of the whole show before -- seems like maybe a lot of sensationalism mixed in with the positive CH/MM story? http://video.nationalgeographic.com/video/player/national-geographic-channel/shows/drugs-inc/ngc-drug-labs-in-the-forest.html

>>>  Ricardo, this is all way too complicated for me, but here's a passage from the 2010 article about BOL by Halpern and others. I might be taking it out of context . . . but I'll leave it up to you to do the heavy lifting. >>>However, prolonged administration of BOL-148 does not result in cross-tolerance to LSD (15). This, in turn, suggests that BOL-148’s mechanism of action for CH is unrelated to those receptor systems thought to be involved with hallucinogenicity: 5-HT-1A and 5-HT-2A. The ergotamines (including BOL- 148, LSD, dihyroergotamine, and methysergide) likely have positive treatment effects for CH through serotonin- receptor-mediated vasoconstriction.<<< Bottom of p2 at http://clusterheadacheinfo.wdfiles.com/local--files/file%3Abol-148/BOL-148.pdf Sewell makes what seems to me to be an interesting, possibly related, point in a 2010 discussion about BOL. >>We don't have any particular reason to suppose that LSD's effects on headache are mediated by 5-HT2A; it affects a lot of receptors.<< Again, I don't know enough to know if this is important to your thinking or not, but it seems related to what you're asking. It's here: http://www.dosenation.com/listing.php?id=7955

http://video.nationalgeographic.com/video/player/national-geographic-channel/shows/drugs-inc/ngc-mushroom-medicine.html

Ricardo, with the understanding that I know nothing except what I figure out, maybe wrongly, from what I read, here are some thoughts. If I'm reading it right, there's a blood test for TNF levels that's used in many studies. Would running this test on people with CH help resolve whether your thought here is accurate or not? (Not saying that you or I or any of us have the capacity to bring about that kind of testing, but as a result of Batch's anti-inflammatory regimen, a lot of people are now insisting on having their vitamin D3 levels tested. No idea what would be involved in requesting a TNF test, whether it's a common thing or a complicated thing.) http://www.dialogues-cvm.org/pdf/17/DCVM17_07.pdf Note that the study you cite shows that 5ht2a receptors exist outside the brain, and that activation of those outside-the-brain cells also very strongly inhibits production of TNF (I think this is the same study -- the title you gave for it is different): >>>The G protein-coupled serotonin 5-hydroxytryptamine (5-HT)2A receptor is primarily recognized for its role in brain neurotransmission, where it mediates a wide variety of functions, including certain aspects of cognition. However, there is significant expression of this receptor in peripheral tissues, where its importance is largely unknown. We have now discovered that activation of 5-HT2A receptors in primary aortic smooth muscle cells provides a previously unknown and extremely potent inhibition of tumor necrosis factor (TNF)-[ch945]-mediated inflammation.<<< http://jpet.aspetjournals.org/content/327/2/316.full.pdf You would think that TNF blocking drugs, like the one your friend's friend was taking (remicade) would be effective against CH, wouldn't you? I don't see any studies of that, for any of them (enbrel, humira, cimzia, simponi). In fact, there are reports of 5 people developing CH within a month of starting remicade: http://www.ehealthme.com/ds/remicade/cluster+headache Of course, the percent of people reporting CH after starting remicade is about the same as the percentage of people with CH in the general population, so it might be meaningless, but it's interesting to read the symptoms listed by people who report getting headaches from TNF blockers: http://www.medhelp.org/posts/Arthritis/TNF-Blockers-and-Headache----Humira--Enbrel--Remicade--etc/show/324130 If I can say so, the "vitamin D3" anti-inflammatory regimen is also tackling this TNF issue. D3 and fish oil, the core active elements in that protocol, are both TNF blockers: >>We found 1alpha,25-(OH)(2)D(3) could significantly suppress TNF-alpha<<: http://www.ncbi.nlm.nih.gov/pubmed/20722932 >>There was a significant inverse exponential relation between TNF alpha or IL-1 beta synthesis and mononuclear cell content of eicosapentaenoic acid (EPA), an n--3 fatty acid derived from ingested EPA (fish oil) or metabolism of ingested alpha-linolenic acid (flaxseed oil).<< http://www.ajcn.org/content/63/1/116.short I realize that your excitement is more related to the potential general healing powers of psychedelics. Just offering all this in case it leads you anywhere worthwhile. As for your actual question -- >>The only research question that this is bringing up for me, and I would love anyone's input on is, "What factors in the human body cause a rise in TNF levels?"<< -- the only answers I have for now are either useless -- it's plainly in many cases a genetic predisposition -- or essentially circular -- things that cause inflammation (by activating, or "degranulating," mast cells) raise TNF levels, and increasing TNF levels cause further increases in TNF levels. >>Activated mast cells are source of inflammation. Large amounts of TNF-[ch945] are quickly released by stimulated mast cells. All the cells involved in inflammation have receptors for TNF-[ch945] and are activated by it to synthesize more on their own. This positive feedback quickly amplifies the response.<< http://users.rcn.com/jkimball.ma.ultranet/BiologyPages/I/Inflammation.html#Tumor_Necrosis_Factor-alpha_%28TNF-a%29 >>Mast cells can be stimulated to degranulate by direct injury (e.g. physical or chemical [such as opioids, alcohols, and certain antibiotics such as polymyxins]), cross-linking of Immunoglobulin E (IgE) receptors, or by activated complement proteins.<< http://en.wikipedia.org/wiki/Mast_cell

Related to what Ron just said, I've been thinking that maybe if you identified some specific research questions you wanted others to help you with -- even if it's just finding references for you to make sense out of -- probably some of us would be glad to do it. (Or I would, at least.)

It's very good of you, Lt2, to respond so informatively and non-defensively to others' questions, comments, and experiences. I admire the spirit of learning with which you are undertaking this. Thanks.

[Edit: I see that Lt2 has already responded while I was laboriously composing this. His simple answer is about the same as my laborious one.] I haven't wanted to stick my nose in here with any complexities, because I think the simplicity of Lt2's method deserves to be tested on its own. It works for him, and if it works for others, then you've got something important. So, I'd be inclined to stick with Lt2's advice to anthony: Do it the simple, "clean" way if you can, and see what happens. (An additional very small caution in this regard at the very end.) Building on the comments of several others here, and saying that I'm no expert at all but I've done a whole lot of reading, I'll just say these things: The articles that shocked posted suggest that it's the effect of GABA on sleep centers that treats CH. (I'm talking about GABA in the brain -- as Lt2 has said, there's at least an open question about whether GABA supplements even cross the blood/brain barrier to reach those sleep centers.) Every single thing in Ricardo's Gaba Ease is "gabaergic," affecting GABA in the brain in some way (there are a lot of ways that GABA is affected--increasing it or reducing it, for example). Valerian is particularly so, but so are hops, melatonin, and theanine. (In contrast to GABA supplements, these things do cross the blood/brain barrier.) That's why they're in there. Here are some citations about all that, to give you an idea: "Evidence that the beta-acids fraction of hops reduces central GABAergic neurotransmission": http://www.ncbi.nlm.nih.gov/pubmed/16920300 Valerian: http://ods.od.nih.gov/factsheets/valerian (down the page, under "How does valerian work," third paragraph) And many of the drugs used for CH increase GABA in the brain. This includes neurontin (gabapentin), topiramax, valproate, and depakote. Neurontin became favored because it acts most quickly (within 30 minutes) to raise brain GABA levels. Here are a couple of citations about that: “Topiramate increases brain GABA”: http://www.neurology.org/content/52/3/473.abstract "Gabapentin raises human brain GABA in 30 minutes": http://cds.ismrm.org/ismrm-2000/PDF1/0014.pdf As many know, the early tests of neurontin against CH had very impressive results: http://onlinelibrary.wiley.com/doi/10.1111/j.1468-2982.2001.00260.x/abstract The authors of that last study say: ("We hypothesize that the gabaergic action of gabapentin, perhaps combined with other mechanisms, such as calcium channel blockade, may be responsible for its remarkable effects on cluster headache.") Too bad about the %&&*(&*( side effects. So, going back to what Mystina said, it also seems to me there's plenty of reason to suppose that managing GABA in the brain might help with CH. I'd love to know why Lt2 did not choose the over-the-counter formulations of GABA that are compunded so they do cross the blood/brain barrier --picamilon and phenibut -- but I'm sure he had good reasons. And, again -- it's working for him. Because of some things that have been mentioned in posts in this thread, I present a very small, probably inconsequential, caution. In one of the follow-up letters that shocked has linked to, a neurologist points out that because about 30% of people with CH also have sleep apnea or other sleep disorders, it is not always wise to mess too strongly with their sleep centers. Of course, he's saying this in the context of the substance used in the experiment, sodium oxybate, which is a strong "hypnotic" with "potential for abuse," and so it might not apply to simply taking GABA supplements at all. But since Lt2 has mentioned sleep benefits a few times, I though this might be an addition to the database of things to be considered. Here's a link to that short letter (the second letter on that page): http://www.neurology.org/content/77/1/67.abstract/reply#neurology_el_43011

I think it's January 15th at 8:00. (A lot of info spread among a lot of threads here, so I'm just reporting what I read.)

From a longer post, which is down the page a bit at http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1317418320 >>>. . . . I guess everyone already appreciates this, but (as I understand it), it must not have been easy for Entheogen to keep this drug [bOL] focused on CH, since clinical trials on people with migraines would reveal the existence (or non-existence) of a much huger market, but would not demonstrate that it works for CH, hence would only mean that CH was available "off label" for CH, which I think would have implications for insurance coverage for CH use. Just guessing here, but if I am understanding this correctly, then some people have already sacrificed a lot of short-term financial gain in order to serve people with CH.<<<

joe, oxygen is the most important thing you can have to abort your headaches. This shouldn't even be a discussion with your GP: just get the prescription and get started. More here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 As Ting says in her post, "busting" is using these agents to stop cycles or prevent cycles. It can help with aborting them, but stopping/preventing them, by using effective doses spaced about five days apart, is generally preferable. It is strongly believed here that triptans will block the effectiveness of busting, so (for purposes of busting) that's where the oxygen comes in, enabling you to get along between doses without resorting to meds that block busting. HBWR is a pain to work with. If you want to bust, you can buy RC seeds relatively inexpensively. You might want to look over the files that tommyd has created to maybe get a better sense of all this. They're in the "Clusterbuster files" section of this board. Here's a general one: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865 Here's one on seeds: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 Here's one on things that block busting: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731 In my opinion, if the Frovatriptan is in tablet form, it probably won't help you unless your headaches are very predictable and you can take it in advance. If it's injectable it might help more . . . but it sounds like maybe you've experienced some of the side effects of triptans. Others will have wiser things to say about this than I do. Strongly recommend that you get the oxygen ASAP. I know virtually everyone else here agrees about that. If you don't want to bust (or even if you do) and you haven't tried it yet, the anti-inflammatory "vitamin D3" regimen has helped quite a few people, and even though you've already tried a lot of OTC remedies, it could be worth a shot for you. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

hey joe, welcome, and thanks for posting and standing by. looking forward to your input. as you probably know, paper is generally considered the best busting agent. but if you conclude you're using too little to really make a long-term difference out of reluctance to "trip," you might consider seeds, from which you can get a stronger dose (than a very low dose of lsd) without psychedelic effects. are you taking no pharmaceutical meds right now? you have oxygen?

i think i answered this at another thread, anthony, but brown is the color they commonly are when purchased. i've bought a lot of seeds from a lot of different places, and they always have been brown (and they have worked). sometimes a few are kind of very dark brown or black, and we usually toss those away, but i don't even know if that's necessary. at that other thread, ricardo said he didn't think you could get green seeds, because those would be fresh seeds. i know agent orange was one person who talked about using green seeds, and i never trifle with AO's knowledge, but i was puzzled when he wrote that since as i say ours have always been brown and, as i say, they have worked. shaman's garden is not an unusual place for people to buy from. people here have reported getting good seeds and seeds that did not seem to work from virtually every place that sells them. there's no reason the ones you have should not be good, as long as you've stored them in a reasonably cool, reasonably dark place since you bought them.

No, there are no current trials of BOL-148 (which I think is what you're asking about). It's hoped that next year there might be some. To be informed when trials of BOL are underway, you should register here: http://www.entheogencorp.com/community/ Sorry there isn't better news about this. I can only say that at the Clusterbusters conference this year, Dr. Halpern was optimistic about trials next year. Do you care to say anything more about seeds, just in case you were somehow missing something when you tried them? Also, you might consider the anti-inflammatory approach (the "vitamin D3" regimen, as it's sometimes called), which has helped a lot of people. You can read about it here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 And some folks here say they've had very good results from the licorice root method: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

I assume that Michele Bachmann, who famously suffers from migraines, will be targeted. (In my experience, she can cause them, too, but maybe that's just me.)

http://video.nationalgeographic.com/video/player/national-geographic-channel/shows/drugs-inc/ngc-mushroom-medicine.html

Skip, there's a very good illustrated discussion of tank types, regulators, and other topics here: http://morrobayphotos.com/ch/O2primer.htm More extensive discussion here: http://www.clusterheadaches.com/O2/index.html You can find information in the last section here about places where you can buy what you need: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790. You can probably buy a good regulator where you get your tanks. Quite a few people use the one illustrated on this page, second row, far right, "Oxygen Regulator." I'm assuming that it or something like it can be purchased at most welding oxygen places, or maybe there's a Harbor Freight store near you. This regulator does not provide an lpm reading, but you can just open the valve to the flow rate you need. http://www.harborfreight.com/catalogsearch/result?keyword=regulators If you're considering a more complex setup, maybe using a demand valve, there's a lot of good information at ch.com. Here's one thread, but you can use their search engine to find more: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1226213955

 Just another piece here for your inquiring minds, AO and Hejada. While it seems completely logical that the hypothalamus is involved (given cyclical regularities, among other things), Kyle posted an article here earlier this year that contained this, based on visual brain studies of people with CH: >>>Although prior research with VBM and positron emission tomography found patients with cluster headache had abnormalities in the hypothalamus—proposed as a key component in the pathophysiology of cluster headache—the current study showed no such abnormalities. “Dr. Filippi’s poster muddies the waters a little bit, because his group didn’t find the same abnormalities in the hypothalamus that had previously been reported,” said Stewart Tepper, MD, professor of neurology, Cleveland Clinic, Lerner College of Medicine, Ohio, who was not involved in the study. “The increasing sophistication of brain imaging, however, will allow us to continue to gradually work out the entire anatomy of the efferent outflow of cluster headache and learn how best to treat it.”<<< The thread is here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1311825574

You're not alone, "citizen scientist" Hejada: “Immediate Improvement of Cluster Headaches after Sexual Activity” http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2077391/?tool=pmcentrez Although from a recent thread here, I would say you're in a minority. Vigorous physical activity (running, calisthenics, etc.) does help some people abort an attack. (If I'm not mistaken--though I am mistaken on myriad occasions-- I think that's how the efficacy of oxygen was first realized.)