CHfather

Thank you, Bob, for all you have done to bring about the exciting prospect of these studies and where they might lead. And thanks also to all those who have been beside you in these efforts for so long.

This is so great to read, Fab! I'm curious -- Do you think that being "discovered" by your husband during an attack (which you wrote about in an earlier post) has somehow made it easier for you to make these lifestyle changes? One thing I was surprised by in the personal stories in that booklet "Living with Cluster Headaches" was how much effort some people with CH go to to hide their pain from others, and I wondered as I read that whether hiding the pain from others might be a deterrent to trying "unusual" things to address the pain. From a research perspective, it's just too darn bad that you've also been having such good results from the RC. As you say, it screws up the assessment of the variables.Â

well, there's not a lot of data here, so i have two very weak thoughts: 1. it seems odd that he ran out of O2 after just a few hits. assuming that the tank was full and he's using it effectively, it seems that even a small tank should have lasted longer. makes me wonder whether he's reliably reporting everything to you. 2. we've talked about MSG as a trigger for some people (CH and regular headaches), and possibly for your son (i think bacon, which sometimes has MSG, was on your watch list for a while). so i'm suggesting, very weakly, that chicken tacos are often laced with MSG, as are the things that kids often eat while doing all-night stuff, such as flavored chips (tortilla chips, potato chips, etc.). just a very weak caution. the beer is a more likely culprit, i suppose, but i figure maybe he might drink beer pretty often but maybe only occasionally accompany it with MSG-laden items. (i got really bad pancreatitis from MSG. took me years of intermittent agony to figure out that that was what was doing it to me. so i see that as a possible culprit more vividly than other people would.)

par, the "Cluster O2 Kit" (formerly known as the O2ptimask) comes with a nice breathing tube that can be used instead of a mask. In the US, it can be ordered here: http://www.clusterheadaches.com/khxc/. Used to be available in Europe (where I think, for some reason, that you are) at headachemasters.com, but apparently it's been discontinued there. I think you can have one shipped there, but I don't know how pricey that would be. The "kit" itself is $23US. A lot of people like this setup for other reasons (bigger, stronger, bag, etc.), and the mask might even be good enough to give you a good seal.

I'd say www.iamshaman.com and www.tranceplants.net have both been reliable seed suppliers for a lot of folks. Psychoactiveherbs.com was also well regarded, but as far as I can tell they no longer sell RC (or HBWR).

i think it's george clooney.

par, if you don't use the strap to hold the mask to your face, it will just fall off if you fall asleep.

I mentioned in an earlier post in this thread that part of the difficulty of finding an effective treatment for CH is that you can't give CH to lab mice and then just throw possible medications at them until one seems to work. I have also suggested that I am hopeful that advances in brain science will mean advances in understanding and treating CH. Here's a story from today, about a huge advance in finding a possible treatment for Alzheimer's: growing Alzheimer's cells in a gel. It's exactly the kind of thing I am hoping might happen regarding CH (though it's a lot farther off for CH, of course). (By "kind of thing," I just mean some big breakthrough that changes the game, not necessarily this specific one.) Here are a couple of early paragraphs: >>>“It is a giant step forward for the field,” said Dr. P. Murali Doraiswamy, an Alzheimer’s researcher at Duke University. “It could dramatically accelerate testing of new drug candidates.” . . . It allows researchers to quickly, cheaply and easily test drugs that might stop the process in the first place. The crucial step, of course, will be to see if drugs that work in this system stop Alzheimer’s in patients. . . . . . Dr. Tanzi is now starting an ambitious project to test 1,200 drugs on the market and 5,000 experimental ones that have finished the first phase of clinical testing — a project that is impossible with mice, for which each drug test takes a year. With their petri dish system, Dr. Tanzi said, “we can test hundreds of thousands of drugs in a matter of months.”<<< http://www.msn.com/en-us/news/us/researchers-replicate-alzheimer%E2%80%99s-brain-cells-in-a-petri-dish/ar-BB8W5er To me, this is an example of why funding is so desperately needed to look for CH treatments. The government provides about 500 million dollars a year for Alzheimer's research.

Darci, here are a few things for you to read: Oxygen (which you really, really, really want to get): https://clusterbusters.org/oxygen-information/. (This is under the black and white MENU tab on the left side of the page.) Make this a priority, either through a medical prescription or, if necessary, by using welding oxygen. Busting basics: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865. (Many more files in the "ClusterBuster Files" section of this board.) LSD, psilo, and LSA are the most commonly used busting agents. Low doses, often. But others are discovering other substances that also work. So it's hard to answer your "maybe . . . maybe" question in your last post, but the answer is probably yes. D3: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 Licorice root: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 Two short-term things: Try an energy shot, energy drink, or strong cup of coffee at the first sign of an attack (this generally does not keep people awake at night). Try melatonin at night, starting with something like 6-9 mg. and moving up to a dosage that helps. In case I haven't emphasized it enough . . . you want oxygen, ASAP.

WEGO Health Activist Lifetime Achievement Award. Richly deserved. You can endorse him for the award here: https://awards.wegohealth.com/nominees/7511

bassoon, would you mind saying what the RC dose levels were that induced some kind of trippiness? even knowing that there are many variables (including personal ones and ones related to seeds' LSA content), it would be helpful to know where that threshold was for you. thank you.

Would be so, so happy if this is an answer for you, bg!! Thanks for the conference pics. I still love the one of you and me from last year's conference.

Thanks, THMH and HL.

 While you're considering busting . . . Have you/he tried licorice root? https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068  Is he doing the D3 thing? https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804  Energy shots or energy drinks at the first sign of an attack (just before O2)?  Silver bullet vibrator? Thread: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1369049582 This has been very helpful for several people who have tried it. Very inexpensive at amazon.com. I'm a supporter, too (daughter). We keep searching. Hang in there. Â

kmom, While still saying that an official diagnosis would be a very good idea, if only to rule out other possible conditions, a couple of responses. If the oxygen tanks you obtained for your son were welding oxygen tanks, you can probably have them "refilled" (actually, they just usually replace your empty tank with a full one) at the place where they were purchased. There's a lot I don't know about this. It might be possible to take them to any place that sells welding O2 and have them refilled/replaced. I don't think they care whether the tanks were originally theirs or not--but I don't know for sure. And if they're medical oxygen tanks, I just don't know how easy a refill/exchange would be. Maybe someone else here does. Most people who buy welding O2 don't get any questions. I remember one person here saying that he was asked, "What are you going to use it for?" and his answer, "Welding," was sufficient. I would guess that acting like you know what you're doing would be sufficient, and it seems to me that the key to that would be asking for a specific tank size. If your son doesn't get many attacks per day, and if he handles them quickly with O2, and if his cycle is about to end, I would guess that a 60 or 80 cubic foot tank would be sufficient. So maybe asking for a specific tank size is enough to convey legitimacy. I know a person who decided to go the other way (although it turned out that nobody asked her any questions). She decided to say something (if asked) along the lines of "My son-in-law is doing some welding at their new house and he asked me to pick up a sixty cubic foot tank of oxygen." That way, she could plead ignorance about any follow-up questions. I gather you are suggesting that maybe your son was using psychedelics last year and that might be why he missed his cycle. As I understand it, that's the very way the usefulness of psilocybin was discovered -- a guy whose CH went into remission during his youthful years of experimentation, and then started again after he stopped experimenting. So maybe, if I'm reading you right, you're onto something there.

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.