CHfather

I don't know where to start with this . . . so I'm not going to go very far. I think you are saying that psychedelics treat CH because they affect psychological states, particularly PTSD and depression. That is, they don't treat CH in some "physical" way, but only by affecting the person's psychology. Actually, I don't think that's what you're saying; it's what you explicitly say: >>>Psychedelics get their results because they are treating a mental/emotional issue.<<< The corollary can only be that it's not either of the other ways around that we might consider -- that people's depression and PTSD lift when they have a successful way of treating CH; OR that psychedelics affect both the "physical" thing that is CH and the "psychological" things that are PTSD and depression. I see so many possible contradictions to what you’re saying that I wouldn't even know where to begin listing them. I'm not saying that I am right and you are wrong; I am only saying that our views about this are so different that listing my quibbles doesn't seem worthwhile. A fellow at another thread here at this site was saying today that we need a new paradigm to really understand CH. Old fogeys like me famously resist new paradigms and find arguments against them, and often the new paradigms turn out to be correct and the old fogeys turn out to be wrong. I will continue considering what you say; I just don't want to debate it. And if you find an emotional/psychological treatment that keeps CH away (as you suggest you think you might have done), I'll be among the first to help you spread the word. Just a final comment about the “physical” vs. “emotional” distinction you seem to be making. You say >>Psilocybin is probably the single best treatment for PTSD, and that disease is 100% emotional. Meds that treat the physical are those that alter a structure, so for example verapamil altering calcium channel ions.<< My response to that is that it seems fully clear that psilo treats PTSD by altering physical structures. The result as experienced by the person with PTSD is “emotional,” but the mechanism is physical. PTSD has specific physical manifestations in the brain, and it appears that psilo treats PTSD by repairing the damaged cells and causing/helping/allowing/something new cells to grow in the right places. Unlike with CH, where structural abnormalities in the hypothalamus have not been directly observed (yet!), changes in the brain (the hippocampus, specifically) are directly observable in people with PTSD. (http://www.thedoctorwillseeyounow.com/content/stress/art1964.html?getPage=3) And those changes seem to be reversed, physically, by the administration of psilocybin. Now, this study I'm about to link you to was done in lab mice. As it happens, in my last post I mentioned that scientists can "grow" lab rats with specific disorders, including all the symptoms of PTSD. Here's a report about the study: http://www.naturalnews.com/041393_psilocybin_psychological_disorders_magic_mushrooms.html And here are the key paragraphs: >>>Common symptoms, such as hyper-vigilance, memory fragmentation, flashbacks, dissociation, nightmares and fight or flight responses to 'triggers', are generally thought to be psychological and therefore treatable by learning to change thought processes. But new research suggests that they may in fact be the result of long term physiological mutations to the brain. In the South Florida University study, the mice treated with low doses of psilocybin grew healthy new brain cells and their overactive medial prefrontal cortex regions (common in PTSD sufferers) were restored to normal functionality.<<< To think a little more about this, it seems very unlikely that the mice “know” that they have PTSD. They are just reacting to stimuli and storing those memories in their brains, reinforcing the PTSD "circuitry." When their PTSD is undone, they probably don’t “know” that, either—they just react differently. As best as we can tell, mice do not have minds, as humans do, they only have brains. The outcome might have been “emotional” in some very vague sense, but the mechanism is entirely physical (by which I mean it occurs in observable physical structures). Recent studies show that psilo creates its psychoactive effects by engaging, among other things, the emotional centers of the brain (through a physical mechanism, of course). [http://www.washingtonpost.com/news/to-your-health/wp/2014/07/03/psychedelic-drugs-put-your-brain-in-a-waking-dream-study-finds/] But that doesn’t mean that they only affect those emotional/dream state centers. As Sewell [RIP], Halpern, and Pope wrote in their paper about psilo and CH, >>given the apparent efficacy of subhallucinogenic doses, these drugs [psilo and LSD] might benefit cluster headache by a mechanism unrelated to their psychoactive effects.<< http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=0CCAQFjAA&url=http%3A%2F%2Fwww.maps.org%2Fmedia%2Fneurology.cluster.pdf&ei=IxEwVIy9JI-qyATx_IC4CA&usg=AFQjCNHG69S_yeeN4k3PNmK9n6mIi2ZVfA&sig2=kk5MWsIw6K6oso8VAyCdMg&bvm=bv.76802529,d.aWw  As the PTSD studies seem to show, there are indeed, as these authors suggest, "physical" ways that psilo acts in the brain (e.g., causing new cell growth in certain areas) that are not directly related to psychoactive effects. It's a frontier.

Couldn't agree with you more. Busting was the result of thinking outside the box (or in some ways, back into a box that had been discarded). D3. Oxygen! Tons of stuff. But I don't think that the idea that an "abnormal" hypothalamus is a major contributor to CH really affects the "box" very much -- not many people in the non-scientific CH community are trying to alter their hypothalamuses. It does generally seem that way, so far, with the possible exception of BOL, and of course that's why it's crucial to keep looking for treatments. But it doesn't mean that with more refined tools to analyze the physical disorder and more sophisticated ways of treating it, the physical solution (by which I am referring specifically to dealing physically or chemically with the hypothalamus) will not become available. The idea, which I think you and Tony may have been suggesting, that CH is a particularized response to stress by some people's otherwise normal hypothalamuses, seems to be brought into question by what I have posted. That doesn't mean that finding better ways to deal with stress/create better homeostasis isn't also a potentially fruitful avenue. If you and Tony say it is or could be, I'm sure not going to disagree. Physical/structural cause vs emotional/psychological cause are not mutually exclusive avenues to pursue. I'm looking forward to the "more to come," as I'm sure many others are. I'm also a little confused. I had thought that you were one of the subjects who was taking the tryptamine 5Meo-DALT that you reported about in your other thread. But here you say you haven't touched tryptamines since late 2013. It is not necessary for you to clarify this either way; I'm just saying that I must have been operating under an inaccurate assumption about either your direct participation in that research or about when it took place and what you are using now to treat your CH. My friend with the depression cure once explained to me why it's so hard to find an effective treatment for CH. "You can't give CH to lab rats" is what he said. With a condition that you can create or appropriately simulate in lab rats (those conditions include depression, obsessive-compulsive disorder, male pattern baldness, obesity, and anxiety, among many others), you can just keep giving the rats different substances until you find one that works/seems to work. Then you can (eventually) proceed to test that on humans. As everyone here knows all too well, people with CH are the "lab rats" in this model. The more people like you look for and test possible treatments, the better off the CH community is. And, to say it again, I am also glad that there are scientists -- far too few of them -- investigating CH in ways that are not feasible for the rest of us, which might eventually lead to explanations and treatments or even cures that our current technology is not capable of providing.

It looks to me like depalept and depakote are indeed the same thing -- but I could be wrong. I really feel like I'm entering territory (meds/med interactions) that I don't want to get into here. Obviously, the standard advice here would be to be off depalept for five days before busting. We have learned that some things that were thought to block busting don't actually block busting, or don't fully block it. Verapamil is an example of that, and at least one person has said that prednisone does not block busting for him. So maybe you could be successful while still taking depalept. I have not seen any information that busting while taking depalept would be positively harmful -- only that the busting would not work. So if you can't stop taking the depalept, you could probably, to the best of my knowledge, try busting and see what happens. Since verapamil is one of the drugs that you did stop taking, and verapamil does not seem to block busting, maybe you could start verapamil as you stop depalept, if you feel the need to continue taking some meds. I really am just guessing here, trying to be helpful.

Well, this is quite complicated, but let me try to be clear. Also, I have to say that because it is complicated, I can not guarantee you in any way that my advice will be good. It is not advice, it is just me guessing. Maybe others will join in. I will try to give you information so you can make a decision on your own. Depakote is believed to be a medicine that will prevent busting from being effective. So that could be a problem. You might not get any benefit from the mushrooms unless you also stop taking the depakote for five days. It is possible that the depakote will not have that effect and the busting will still be effective. But it is not likely. Many people find that busting helps a lot with migraines, as well as with clusters. So here's the way I see it. You are right. If you are taking mushrooms while you are also taking depakote, you will have no idea whether busting is helping you or not. I'm sorry to say that, but it's true. If things do get better with the migraines and/or the CH, it would be reasonable to assume that busting is helping you. But if things stay the same or get worse, you will not know why that is happening. It could be because you are off your meds and you are not getting busting benefits because the depakote is blocking busting. But it could also be that you are getting "slapbacks," as we have discussed. As we have discussed, that would suggest that the busting is working. I don't really feel confident that there will be a way for you to tell the difference. I think you are asking: What if I take mushrooms and the CH or migraine gets worse or doesn't get better? Can I go back to taking my usual meds (verapamil and lithium) right away, or do I have to wait five days? Is that your question? If it is, I believe you can go back to verapamil right away. As for the lithium, I believe you can also start taking that again right away. But lithium is a more complicated prescription, and I think starting it or stopping it should be done in discussions with your doctor. I don't think that is related to busting; it's just a concern I have with lithium. Once you have started taking lithium, you should not take mushrooms. Mushrooms and lithium have complicated interactions. If you take verapamil but not lithium, you could probably continue busting on your five-day schedule. I hope I have been helpful. To say it again, because this is complicated, I am just guessing, just giving you my best information so you can make a decision. If you were not taking the depakote, it would all be much clearer. Still nor perfectly clear, but clearer.

timmyy, to answer what I think are your specific questions: (1) You should try at least three doses of whatever you are using for busting, each five days apart. You can judge by the results you get after each dose whether it's helping you or not, taking into account the possible "slapbacks" that were mentioned in previous posts, and recognizing that while these slapbacks, if you get them, might seem to indicate that things are getting worse, they probably mean that things are about to get better. If you feel that things are improving but you haven't knocked out your CH yet, you should probably consider a fourth and/or fifth dose. Sometimes the first dose makes a huge difference, even for people with chronic CH, but often it takes longer, particularly for people with chronic CH (but it seems that your CH is episodic). (2) You can return to your regular meds as soon as you feel you need to after any bust. As the previous posts also suggested, some CH meds, such as verapamil, don't seem to interfere much with busting, but others, such as sumatriptan, do seem to. However, if you decide to resume busting after taking sumatriptan or prednisone or lithium or most typical CH medications, you will need to detox from those again for at least five days (longer, if you have to taper down) before you bust again.  What we expect and hope for is that your CH will be gone after your last bust, so you won't need to take any meds. There are many exceptions to everything I have said here. So it's best that you keep asking questions as you go forward. Very best wishes to you. You have done the hard, brave work, now we all will hope that you get the full benefits of busting.

This is the company's press release about the latest gammaCore results: http://www.electrocoremedical.com/randomized-data-presented-at-international-headache-meeting-ehmtici-shows-gammacore-significantly-reduces-cluster-headache-attack-frequency-the-worst-pain-known-to-medical-scienc More detail: Posters presented at European headache organization meeting (top three): http://ecorelibrary.com/?m=1Â (There might be a simple sign-in to see these.) Thread at this board from one US test subject: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1388946884/0

kmom, Has he been officially diagnosed with CH? Luckily, as the great duo Denny and Jeebs have told you, there's a lot that can be done without doctors. Sounds like money is tight (normally, he'd be covered by your/your family's medical insurance, wouldn't he? At least if you're in the US.), so you don't want to be spending $ on oxygen unless he has CH (doesn't really help other headache conditions). If he does have CH, oxygen is your first priority. Denny has told you the basics of what you need to do. If you're thinking of doing a welding O2 system, we can guide you through that process. (You could look at the CB Oxygen Page under the black and white MENU tab on the left side of the page for more info.) The basics about the RC seeds mentioned by Denny are here (in the ClusterBuster Files section, as he said): https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 Read the other numbered files there, particularly #s 1, 3, and 6. A few things that haven't been mentioned: Licorice root works well for some people: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 The "Vitamin D3" regimen has helped many: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 Melatonin at night helps many (most people start at 6-9mg. and work up). AVOID FOODS with MSG (monosodium glutamate), which are staples of a typical college student's diet (Ramen noodle things, like Cup o' Noodles; flavored chips; and many other things). Keep talking to us . . .

Here's another study showing that the hypothalamus of people with CH (in cycle and also in remission) is different from the hypothalamus of people without CH. >>RESULTS: In patients with cluster headache, the hypothalamic N-acetylaspartate (NAA)/creatine (Cr) and choline (Cho)/Cr ratios were similar between those in cluster period and in remission. As a group, both NAA/Cr and Cho/Cr levels were significantly lower in patients with cluster headache in comparison with either the control [no CH] or chronic migraine groups.  CONCLUSIONS: This study provides evidence of persistent biochemical change of the hypothalamus in patients with episodic cluster headache. Low levels of NAA/Cr and Cho/Cr suggest that cluster headache might be related to both neuronal dysfunction and changes in the membrane lipids in the hypothalamus.<< http://www.ncbi.nlm.nih.gov/pubmed/16614022 This study shows the same thing for NAA/CR: http://www.ncbi.nlm.nih.gov/pubmed/16636250

This study, published in 2013, shows that people with CH have "abnormal" hypothalamic "wiring" that is present even during periods of remission (in contrast to the position that has been stated here that hypothalamic abnormalities are only observed during attacks). http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0057896 The abnormalities are different during an attack and when not having an attack, but regarding out-of-attack people, the differences are enough to tell a CH hypothalamus from a non-CH hypothalamus. The authors write: >>>Using a cutoff of 0.2128, the test yields a sensitivity of 83.33% and a specificity of 100% in distinguishing CH patients during an ‘out of attack’ period from normal controls. <<< There's also a very interesting suggestion here about CH pain. The abnormalities of the hypothalamic wiring during an attack are deeply connected to parts of the brain related to pain perception. The authors write: >>>In the present study, we used a region-of-interest (ROI)-based method to determine whether the abnormal rs-FC between the hypothalamus and some pain-related regions or some other brain regions are present in CH patients during acute spontaneous CH attacks and CH attack intervals in the cluster period. Detection of abnormal rs-FCs of the hypothalamus in these groups revealed three critical findings. They are that: (1) there is an increased rs-FC between the hypothalamus and brain regions related to pain processing such as the ACC and the PCC during spontaneous CH attacks, (2) there is an altered rs-FC between the hypothalamus and brain regions beyond that is related to emotional modulation of pain during CH attack intervals, and (3) these regions have relatively high sensitivity and specificity.<<< In another place, they refer to >>>functional abnormalities of pain information processing in CH patients.<<< You can see where this is leading: that it might be that CH is so horrifyingly painful because the connection between the hypothalamus and these "pain information processing regions" leads the brain to wildly skew its normal perceptions of pain. If this is true, and as brain science progresses, it suggests to me another possible avenue of treatment, dealing with how the brain perceives CH pain. The authors don't say this . . . I'm just going with the flow. Hopefully, a fully effective treatment will be available before that route is pursued. Here's the conclusion of the article: >>>In conclusion, our findings show that CH patients have a diffuse dysfunction of brain functional connectivity of the hypothalamus. It is mainly in the brain regions that are related to pain processing and modulation during the spontaneous CH attacks, and mainly in the brain regions that include the pain system and visual system during CH attack intervals. Moreover, these changes might be used separately to distinguish the different state of CH patients, as well as CH patients from normal controls.<<<

Don't want to sidetrack this thread (any more than I already might have done, anyway), but you just reminded me of this, didg: http://www.oregonlive.com/health/index.ssf/2010/03/oregons_suicide_headache_tree.html You live out West, I think, maybe.

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