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      Welcome   01/25/2017

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  1. The thing is Mr. Shevel, the published studies that you are talking about include a total of one on cluster headaches and that study has a fail rate of 20%. That's IF you actually got relief for these people by your surgery and it's not, to use your own words-- "In the treatment of CH, the possibility must always be borne in mind that the cluster stopped spontaneously, not because of the intervention, but because of the natural progression of the disease." (or because you gave them the right drugs for anesthesia which knocked them out of cycle, just like many of the meds that we use for clusterbusting) The 80% success rate in this story gets a lot of press from you and your business, but very little attention gets paid to the failures. What are their stories like? Because on this site we have heard from more than one of them and the stories have been pretty horrific. In case Mr. Shevel has not taken the time to read through the rest of this post here are the reports- "August 29, 2015 My niece went back to JoBerg and stayed there for three weeks. During that time she had 3 procedures done but unfortunately it didnt work. When she arrived home in Australia she was worse than ever and it has been devastating. " "My sister went twice as she really believes Mr Shevel could cure her. Both times her wounds got badly infected and the cuts in front of her ears looks horrible as the stitches were not done properly." "I have been through 2 operations, and sadly my headaches is not even 1% better. As a matter of fact, where he has cut hurts tremendously. AND I AM R70 000 South African Rand poorer. He promised me he would make it better. > My husband took out a second mortgage on our home. I have also found out that he has lied to me. My jaw could not open after the first operation, and he said he never had this problem... Just to find out someone else on this forum had the same problem. I went to the headache clinic specifically asking them to help me with medication overuse headaches, and they just wanted to operate. I was already taken morphine on a regular basis, I WAS DESPERATE. I THINK THE HEADACHE CLINIC IS THE LAST PLACE TO VISIT IN SOUTH AFRICA IF YOU ARE SUFFERING FROM CH. IN my opinion they are money hungry sharks, which thrive on the desperate and vulnerable." After every operation, I got infection. They do not sterilize where they cut, that's why infection happens so frequently. I know they do not sterilize, because the tears on my cheeks where clearly visible through my make-up. The day when they did the tests I have given them a list of all the meds and ASKED HIM ON SEVERAL OCCASIONS.... WHAT ABOUT THE DETOX. Seriously, if I asked him 5 times, I am not joking. Every time, he told me that so how, after the operations, there IS ZERO DETOX effects. I had the WORST DETOX in Desember after the first operation. Sad, since, my original reason I went there was for them to PLEASE get me off of all the meds!!!! For goodness sake, as a clinic specializing in headaches, the effect of rebound headaches should be so clear!!! Again, they are money hungry sharks!!!" Even if you get relief from your clusters, if your clinic is so messed up that you die of a sepsis infection because your wounds weren't treated right who cares? Or how about some really great facial scarring with a side of bankruptcy and still have no relief from your clusters? It's true that it is hard as hell to find a doctor that knows what they are talking about and when it comes to cluster headache there really is only one way to prove that you are actually basing your actions on facts, not opinions. That's to pass the exam the United Council for Neurological Sub specialties has for headache medicine. https://www.ucns.org/ McGeeney has passed this, have you? When you say "If anyone is misguided, according to the medical literature, then it is Boston Headache Doc. Most “headache gurus” have very little real knowledge of the origins of cluster pain. They offer opinions with emotive phrases to scare patients and when in fact they are dooming them to a life of misery when help is actually available and scientifically substantiated." I would say you have this quite backwords. McGeeney has proven time and time again to all of us here on this site that he has real answers that can and have helped us. He's proven he knows what he is talking about and he has done all of this essentially for free, never once trying to make a buck off of anyone. I am pretty sure he has not actually left anyone without the option of eating solid food anymore either, which I am pretty sure is something you can not say. The only thing that you have proven is that you are willing to disparage people you know nothing about in order to save face from the mutilations and pain that you have caused in your effort to fill your bank account. Final note--On this board it is generally frowned upon when people try to sell things to other members. Especially when the price tag is around $50,000 and the only thing you are likely to get out of it is the knowledge that sometimes things actually can get worse than just having clusters. By the way, thanks! I'm giving a conference talk at the biggest psychedelics conference this world has ever seen in about a week and I was looking for some more material for my talk. The rogue "Dr's" that are out there trying to make big bucks off of desperate people by the old slice and dice will make for a good attention getter. -Ricardo
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  2. So, we either have the latest incarnation of Danny Boy here or Quack Shevel in the flesh......either way, FECK YOU and go away!!
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  3. Yes, lots of people have tried it, usually with a dried form of capsaicin or a capsaicin cream. 90% of the reports here have been that you get a burning nose in addition to a CH attack.
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  4. Dannyboy is back spewing his self serving drivel. Bullshit. Potter
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  5. Supporter here. What spiny said. Best support I can give is to keep up here so I know what's most important, and any tricks that just might help. So you read about people who put their feet in a very hot bathtub of water to help abort attacks. A guy who used lime juice, baking soda, and water during attacks and thought it helped . . . Sleeping more upright . . . Lots of little things to try. Splitting Imitrex doses was a big one. D3 is a very big one. Benadryl. Ginger tea for shadows. Demand valve/high-flow oxygen. Energy shots. Melatonin. BUSTING. More verapamil than doctors usually prescribe. . . . I have seen, and read plenty about, how people with CH can get pretty despairing after they have tried things (usually pharmaceutical things) that they hoped would work, but didn't. Supporters can sometimes make a big difference by taking things into their own hands and having them available, because you never know what might be a major difference-maker. I had to fight the person I support in order to get oxygen for her, and I had to figure out how to get it when her idiot doctor wouldn't prescribe it (welding O2). But having it has made a huge difference. I have no real advice about taking care of yourself. Again, I find that learning here helps me feel like I can be useful. I have definitely learned to stay completely out of the way during an attack, unless I am asked for something. Hiding attacks is a common pattern among people with CH -- often they don't want to be seen in that state. So I go away and "suffer" my own sadness, knowing that what I am suffering is nothing at all by comparison.
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  6. MAPS notes Just finished attending the last lecture of the Multidisciplinary Association of Psychedelic Studies (MAPS). Coined Psychedelic Studies 2017 this was the largest (to date) gathering of professionals, academics, lay therapists and those with a life long interest in the benefits of psychedelic modalities. There were researchers, clinicians, advocates and enthusiasts sharing data, experience and advice. Among those at this robust and vigorous event was Bob Wold representing Cluster Busters at an informational table and Brendan Burns sharing his personal story and knowledge. Emmanuelle Schindler presented the clinical study design and rationale setting the stage for presenting solid data at future meetings. Our cause was well represented. Certainly our situation is a bit one off from the mainstream but it is important we don't let the avant garde of this exciting movement forget our interest as psychedelics rapidly reenter current therapeutic options. I attended many of the talks and wish to provide a high level summary of some of the talks that may be of interest to those considering alternative cluster treatments. The videos of specific presentations are going to be available on You Tube and searching MAPS with the presenters name should guide you to the source. The program should be on the MAPS sight. No claims are made of unerring accuracy, lack of bias in interpretation or completeness. My best is all I have to offer. Stanislav Grof opened the lectures and included his work on breathing techniques to produce a psychedelic state. He is a well loved researcher in LSD psychotherapy prior to making LSD illegal and developed these techniques in the void left by draconian legislation. Many workshops have evolved based on his techniques and components are reminiscent of what Batch has suggested. There was much about herbal roots from around the world I don't want to spell but since we have limited input on things other than LSD and psilocybin I leave their usefulness to inevitable discussions. MDMA got lots of attention but no data for us. Sounds like great stuff for the right application. These will eventually crop up in one form or another. I will also reserve judgement on the large number of folks bemoaning their migraine experiences to Bob. The guy suggesting a stem cell transplant fixed his clusters will go on the shelf for now, Heaven points for Bob. Psilocybin was discussed in a significant number of presentations. The context was in death and dying, addiction, PTSD and pharmacology but the message was loud, clear and repeatable. The use of psilocybin in these context is safe, effective and long lasting. This included measures of anxiety, mystical experiences, squashing suicidal ideation and overall improvement in sense of self. Trait measures of forgiveness, life meaning and faith maturity are amplified in a sustained way. Psilocybin was given in a safe set and setting and included psychotherapy and counseling. Look up work at Johns Hopkins and NYU. Neuroimaging studies report pretty consistent findings. There is the well known interconnection throughout the brain on psilocybin. Decreased blood flow is seen in the Cingular nucleus. This results in slowing or blocking the brains inhibition of data inflow allowing for freer communication. There is desynchronization of the posterior Cingular nucleus and decreased inhibition. Basically psilocybin is believed to inhibit the inhibitor and allow free flow of information. Interestingly the brains Default Mode Network (DMN) decreases with immediate dosing but in 24 hours and then increases in a sustained way for a long time. Similar changes are seen in experienced 1000+ hour meditators. Meditation showed similar findings to a dose of psilocybin 25 mg / 70 kg. The posterior hypothalamus is activated by psilocybin and this activity can be affected by hormones, genetics and inflammation. UW- Madison presented participants in a pharmacokinetic study looking at dose relationships and physiologic safety. It was a Phase I trial to establish safety parameters. It was very safe at all doses. There were 3 dose regimens given a month apart and dosing was based on body weight. 0.3-0.6 mg/kg body weight. So if you weigh 154 lbs your largest dose was 42 mg. That is equal to 6.7-8.4 grams dried shrooms. (4 grams dried is equal to 20-25 mg psilocybin). No adverse physiological events and the participants report sedate to wild experiences. They sought each other out after the study and remain bonded. The question of dosing by body weight or standardized dosing was addressed. Study's showed no difference in outcome measures related to body weight. The experiences where all over the place irrespective of dose and body weight. Seems you get what you need? Looking at bad experiences on meds (bad trip) demonstrated guidance through the event in a safe set and setting was effective. Most related the experience to be profound even if seemed negative to sitters while occurring. Good experiences and bad experiences were latter judged helpful. Look up the Zendo project on psychedelic harm reduction and study the tenants of safe place, talk through not down, sitting not guiding and difficult is not bad. The biggest impression was all the 70-80+ year old wandering around with extensive experience in psilocybin and LSD use. Of course these represent folks who see a profound benefit of these substances in their lives. They are healthy, intelligent productive folks with mind blowing exposure to these substances. A pretty good real life testament to safety.
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  7. I wish there was more new to report (and others may be more on top of this than me). 1. Batch, as I understand it, is now recommending relatively small daily doses of benadryl as part of the D3 regimen, to be increased to full recommended dosage during high pollen seasons. 2. Batch has recommended a new O2 strategy, which you can find by putting "red neck" into the search bar. Someone here said it really worked well for him. (One new frustrating thing is that this new message board doesn't handle internal links, so I/we can only tell people where to look things up, rather than linking to them. Also, can't (or at least I can't figure out how to) attach things or post images. Otherwise I'd be posting Jeebs-as-Borat images to introduce you to the newer folks. But I digress.) 3. dlnmerced put together advice for creating LSA from HBWR that many people seem to find helpful (over in the CB Files section; also posted at FB) 4. The group put together a nice list of "triggers" (not necessarily instantaneous) that had some surprising entries for me. 5. Moxie is apparently doing a lot better, and hasn't been heard from much. 6. Many seem to think that the clinical trials about monoclonal antibodies are quite promising, and, as you probably saw, there's a psilocybin trial going on at Yale. 7. A fellow said that putting his feet in the bathtub with very hot water helped reduce/abort his attacks; some others seem to have found that helpful, too, at least for temporary relief. 8. Another fellow said that drinking a combo of water, fresh lime, and baking soda helped him during attacks. He hasn't reported back and I don't know whether others have also had positive experiences. My daughter enjoys it at least as a "break" during an attack, though she won't say for sure that it makes any difference. 9. A very helpful fellow has suggested that the only major CH med that blocks busting is probably triptans. Not verap, not steroids. I don't know if anyone has tried busting while on steroids. 10. In addition to the stalwarts, many very helpful newer folks have helped fill the unfillable Jeebs void. I would list them, but then I'd leave some out. Most kind of come and go, but when they're here, it's great. 11. I don't know the status of DALT. Maybe you do from FB. I'd say that in reports here, there were as many disappointing trials of it as positive ones. It's my vague understanding that it's hard to get now, but maybe I'm wrong about that. 12. There was something -- DMT, I think -- that someone significant (maybe Flash under a different screen name?) said was what he used, and it worked great. I was interested, but the topic just kind of fizzled. 13. Registrate will be unhappy if I don't mention his app. He's worked really hard to create it, get it right, and try to get it into use. 14. We pooled our funds to buy a tiny drone to track the whereabouts of disappeared but still beloved members. The basic drone itself was relatively inexpensive, but it was pricey to get the kind that turns into a giant corkscrew and flies up the butt of any said member who fails to respond to three or more PMs. Well worth it, I believe.
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  8. At the top of the page, where you found this board "General Board' you will also find the 'Clusterbuster Files' board and 'Share Your Busting Stories' board and so on. I take it that you are using a breathing tube rather than a mask? What flow rate does your regulator go to? Can you adjust it? Have you seen a Neurologist and what medications did he prescribe for you? There is a lot to learn here. Baby steps, you know?
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  9. I used imitrex for 12 years plus. Then I found this place and alternatives. I hope and pray that I'll never use it again. It works short term but made it worse for me long term. There is alot of knowledge here. As well as alot of support. I found this place a year ago and its been the best thing I've found for me in 18 yrs of fighting the beast. Keep reading and asking I've found relief and I feel like I owe it to "us" to help. Because it sucks thinking there is no hope. But there is and you have found it.
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  10. OK so I am new to Dr Cluster Cutter. Being a creature of the Apostle Thomas, I read the papers the good Dr posted to bolster his claims of surgical success in treating the cervical vascular tree of cluster sufferers while disparaging his Boston critic. Of the papers listed one is a very small case report series with less than 6 months follow up. Basically this is the type of "show and tell" paper most experts hate to see. There is no reported evaluation, no description of prior treatments and no objective documentation of long term success. A gratuitous failure is reported to seem genuine. Most importantly there is no follow up paper reporting or describing the subsequent cohort of patients who benefited from this intervention. The other papers listed are a repeated rehash of the same concepts. Putting sheepskin on theory presenting ideas and concepts as facts and forgone conclusions. This type of appearance in peer review type publications is "padding the resume" and complete fluff. This smacks of the worst medicine has to offer. Physicians and surgeons who develop new techniques and have a modicum of ethics refine the techniques, continuously report the techniques outcomes with data and teach the techniques. Peers who review these techniques get fired up and want to learn them and independently validate the findings. With all the folks who suffer these headaches (within the spectrum he alleges successful outcomes) throughout the world there is no way other surgeons would not become curious and investigate this as a possible effective treatment. Believe it or not most physicians and surgeons want to make a difference and want people to get better. Most medical communities have internal checks and balances to prevent individuals doing ineffective, unproven, exploitative procedures. Doctors who do are often found only in independently owned free standing clinics and surgical centers where they can escape the scrutiny of medical staff review and ethic committees. Surgery is an irreversible act. Once steel divides skin and vessels are divided its pretty hard to undo. So be careful if you consent to having a novel procedure because it may make things worse or senselessly drain resources from you and your family. This is also a good example of why controlled studies with long term follow up are vital. Here and on one of the cluster oriented FB pages there has been discussions of medications like ketamine and propofol being beneficial for treating clusters. Both these medications are commonly used in anesthesia. Suppose you have a novel surgery for your CH. You get IV meds for anesthesia, a cut on your neck, irreversible vascular changes with a significant wallet biopsy and voila no headache. You tell your surgeon he or she walks and water and fly home. Three months later the demon returns, your bank account is dry and the surgeon reports your case as a win. Is it possible the anesthetic agent actually provided some relief? Does this sound like some of the medical treatments we take...works for a while and then you need another dose? How do you know? No way to know that is one reason studies are important and why CB has directed resources at doing important studies. Please use care, inform yourself with independent information and don't be exploited. '
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  11. Just the presence of a supporter does help a lot! To me, small things a support could do are so much appreciated, valuable. Grrl77 you could help by knowing the techniques used by your partner/this site as there are plenty and procedures well documented and quite extensive. Just to be sure no important information gets lost. Busting for example has a very specific procedure where timing is essential. Sometimes it is hard for a cluster head to follow the instructions point after point (slapback headache, ch becoming even more severe but less frequent may force somebody to resist...) To me nothing is more sad than sitting on a chair in the shower using hot/cold water fighting the beast, knowing nobody but really nobody is there, just me alone... Just the presence is important. I know and my ex wife knows she can't help on the pain so I never ever did but weight on here shoulder. But a warm hug, cup of tea, whatever after an attack is so much appreciated and can't be paid with money. But please, as supporter do not make the mistake going into suffering yourself! I know this is difficult but important, very important supporters controlling the impact to themselves as hard as possible.
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  12. G'mornin Shay! Welcome to the community! Attending the conference will be life changing for both of you! The only thing that he might be overwhelmed by is knowledge gained and the cluster bud love! ! And, we have many, many supporters who attend as well.....we love our supporters!!! Dallas Denny
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  13. Good Evening, This is just a quick update. All the equipment finally arrived. It took a little while to get here but otherwise dealing with Foremost Medical was not that bad. The regulator actually only goes up to 120 L/min. I set it all up and it functions. I breath in softly and it slowly lets out oxygen. If I breath hard and fast it opens more letting out more oxygen to match my increased inspiratory effort. My cycle seems to be over so I will not being using the new equipment for awhile. Maybe I will be lucky, never have to use it and put it up on Ebay in around 3-4 years . I was curious about what might be expected flow rates for inspiration and came across this study abstract while googling. Study Abstract Also here is another study from 3M. Peak Inspiratory Flows of Adults Exercising at Light, Moderate and Heavy Work Loads And here is another on healthy adults breathing through the nose. Peak nasal inspiratory flow; normal range in adult population
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  14. Hi and welcome kevlar! It seems that you have done a lot of reading on the board and learned a lot. Isn't it amazing that this site is miles ahead of most doctors? Oh course it is a rather rare disorder and most physicians would go broke if they only treated Chers! Kudu's for getting started on the D3 Regimen. For some it actually stops the hits and for many it will lower the intensity and ramp up time considerably. Either way, you win. A proper O2 set up will amaze you! You really need at least 15lpm with a non-rebreather mask. With the proper breathing technique, you can kill a hit in 10 minutes or less. Have you tried an energy shot or caffeine at the first sign of an attack? They can abort one for you. Drink it down fast. at the first sign of a hit. Yes, falling barometric pressure is a common trigger. Airplanes do not maintain the same pressure that you experience down here. And falling pressure due to weather fronts can be rough too. Triptans are famous for extending cycles. The pills take too long to really help much. Nasal spray or injection are preferred. As for Topa many of us call it Dopamax. Verapamil is often the first pharma prescribed. Good luck with your appt. and I really hope that you get the O2 you so desperately need.
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  15. Well, for most people pred taper only works while on the taper, and sometimes/often only at the higher doses (not while actually tapering down). Its principal purpose, as Pebbles suggests, is to tide you over until verapamil can kick in. If you can't get to a doctor, hence can't get verap, the effects of the pred might wear off before or during your travels. Sometimes the pred will kick the cycle, or the cycle will be ending anyway, but we have story after story here of only temporary effects from tapers. The best option is to get to your doctor and get proper prescriptions for everything . . . but that sounds like it might not happen, and even then, it's possible that a sensible doctor won't prescribe verap if you're going to be traveling for a while, since verap needs to be monitored in early stages. I would still seriously consider busting if I were you. Not to add to the bleakness, but I suppose you might know that air travel triggers attacks for many people. At least, be sure you have energy shots/drinks with you on the plane; even better, small amounts of some busting substances placed under the tongue will help abort attacks (though of course having them at the airport is a bit risky). Too damn bad that the UK banned rivea corymbosa seeds -- but you could probably also get those from the Netherlands, too. Try to make arrangements for O2 in Las Vegas (and Greece, if possible). Check with your O2 supplier there, because they might be able to make arrangements for you. At the least, bring your prescription with you and maybe you can get it filled by a supplier in LV.
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  16. Sorry you're in such a bad way and a tough spot, Steveo. From what you've written, I'm assuming you have no access to a doctor. I'm kind of gathering that you're in the UK (although the times in your message aren't consistent with that). If that's where you are, what about getting truffles from the Netherlands? I think they'll fill a mail order, or maybe you would have some way of getting them directly?? (Assuming that you don't have any resources among your acquaintances for busting substances.) If you're not familiar with busting, it's using psychedelic substances, potentially at subpsychedelic levels, to treat CH. You can read about it in the numbered files in the ClusterBuster Files section. You would have to be off the Zomig, but it sounds like that might be going to happen anyway. In the short run, when it sounds like you have practically nothing, you could try drinking an energy shot, such as 5-Hour Energy, at the first sign of an attack. That can reduce the severity of an attack, or sometimes even abort them. In the future, you might consider asking for injectable sumatriptan instead of the spray. With most injectors, you can split the doses and make the stuff last longer. (If you've been using the Zomig with most attacks, it is probably making your situation worse, with rebounds, etc. Ultimately, of course, you want to be as pharma-free as possible.)
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  17. 30-60 minutes is way, way too long. Should be 15 minutes, at most. Please tell us more about the "big tube" you are using and the regulator (what liters per minute) and the source of the oxygen -- is it coming from a tank/cylinder/canister, or from a machine. Is there a bag on the "big tube" that fills with oxygen and then empties as you inhale?
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  18. Sorry your getting CH hits daily. I have no answers to help you but know it's not the oxygen leaving you tired. Cluster attacks take more of a physical toll than we sometimes realize. If you have some milder attacks try a 5 hour energy shot or Red Bull. Also if you have daily attacks with a unending cycle you might want to research busting in the files section.
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  19. I think you'd capture it more generally with "capsaicin" or, probably better, "hot peppers." Sinus Buster is a product. Of course, as we've seen, people administer the peppers in a range of ways, from eating spicy food to sticking one thing or another in their nose.
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  20. yes I have (cayenne powder)...hurts like a bitch... WHILE you still endure the ch hit...but...give it a try...we all the same...AND all different.. ...careful at work...folks see you disappear....and come back with red eyes and the "sniffles"...assumptions are made....
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  21. Part of the way Sinus Buster is also supposed to help in the long term is that it also depletes Substance P.
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  22. I have used a product called Sinus Buster, which is essentially pepper spray, for about three years. It works about 70% of the time. I had also heard about people using hot sauce under the tongue. I didn't think I could hold sauce that long, so I use atomic fireballs instead. Again, helps about 70% of the time. If I recall correctly, it was Ricardo that had mentioned the hot sauce.
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  23. dre, As I understand it, anything less than 6mg for CH is considered "off label." Migraineurs can get 3mg or 4mg injectors. Your "why" question . . . I suspect that the only trial for CH used 6mg, so it became the standard . . . and why should the pharma companies really care if that's too much: it works and people just accept the side effects and have to live with the insane costs. All that is my understanding/opinion. A doctor can choose to prescribe you a 4mg injector, and some people can get prescriptions for vials of sumatriptan and syringes, so they can measure their own doses. All this should be considered, as Rod says, in the context of the risk that triptans extend cycles, create rebound attacks, and may make "regular" attacks worse. If/when you're ready to try busting, let us know. The numbered files in the ClusterBuster Files section are good for the basics, but a little out of date in some regards. Just a quick note about RedBull. If it works for you, there's no reason not to continue. Many people do prefer energy shots, such as 5-Hour Energy, in part because they're easier to chug quickly. An energy shot, small as it is, actually contains more caffeine and taurine than most of the 8oz drinks.
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  24. I tried using Red Bull to stop a CH during onset and it worked! I was very happy to find something that is not medication per se that can abort an attack. Learned about that trick here on clusterbusters.org. Thanks!
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  25. As Pixie says, getting a diagnose first is absolute key. Depending on your access to a real specialist who really knows his stuff the best thing as with many other diseases is to be as good informed as possible to not get sent away with an unsatisfying answer. This is an obscure disease however with plenty good (and many of them harmless) options to ease the burden - if she has CH. Please correct me if this is a bad advice but from my personal experience and many others reporting similar, a diet change can already show some improvement. In case you need to wait too long for an appointment you might consider giving this a try already and see what happens. There should be limited risk as you just avoid what isn't good for most "normal" people anyways when consumed constantly. Some weeks ago I have removed a lot of things from my diet and feel overall way better and only have a single, very mild attack each morning at 7am coming from 3-8 attacks per night (I am now working on getting rid of the remaining attack as well of course) What I did: - no sugar, no meat, no cow diary products, no wheat, no alcohol, no glutamate, very reduced coffee consumption, no food with high histamine or purine levels.Smoking is very bad as well obviously, I can't stop though yet. Only eat self prepared food, so you know what's in it. Most of these things raise your PH level and / or are high in purine. There is clear evidence that many if not all of us have an imbalanced PH level (constantly too acidic) You will ask what's left to eat - there is plenty left actually to keep your calorie count positive and get all vital nutritions. - Most vegetables (avoid histamine rich ones like tomatoes), also check if your wife has pollen allergies. Some veggies share the same allergen as certain pollen so there is a chance for a cross allergy. ( example = Arlen pollen allergic person may be allergic to potatoes and carrots as well). Being allergic does not necessarily mean you have to have clear symptoms like hey fever / itchy eyes etc !! - Butter and goat cheese - Most berries (very rich in antioxidants), be careful with strawberries - many fruits but be careful with some like bananas or citrus - self baked bread, takes literally 5 minutes to prepare .Gluten free wheat, no yeast, baking powder, joghurt lactose free, some seeds, salt, water. Mix and bake for 40 minutes, done. -Fish (only salt water like Pacific salmon) - eggs are technically not great when it comes to purine but I seem to tolerate them - all native / cold pressed oils are very good and many like coconut oil have great anti inflammatory effects and provide with omega 3 fats and good calories. Hemp oil, olive oil, coconut etc, do some reading maybe. Now this is a pretty tough switch both from an organising perspective as well as a mental one (sugar withdrawal...) But it's doable. No cheating, or you can't assess if it helps. Took me a week or 2 until I saw the benefits but they are undeniable and I don't crave anything anymore. To be clear, I don't think this is neither cause nor cure for CH but it may drastically help. I am convinced though there is a link, there is more and more clear scientific evidence showing up the recent years that your gut is actually the root cause triggering off many bad things that have originally been thought of originating somewhere else. Parkinson, Alzheimer's, MS, even depression and many forms of cancer you name it are tracked back to an damaged gut system. Even if your Wife doesn't have CH, I recommend read up leaky gut syndrome or one of the pre stage causes namley Candida overgrowth. (Hello again sugary diet...) Again, this maybe isn't a good idea to do without a doctor monitoring if there are other conditions like diabetes or else but you can sure assess this on your own. I just type all of this because even if it's not CH, being more carefully on what we eat should only benefit us on many levels. (If not done too extreme of course Let us know what you think
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  26. Okay, well the first thing is, does she have an accurate diagnosis? Has a doctor actually diagnosed her with CH? Because this is kind of key. What she has may or may not be clusters and you don't want to treat her for clusters specifically if it isn't. There are also a lot of bad things that present like cluster headaches, and need to be treated, but that busting isn't a good option for. So it's very important that she actually have a diagnosis from her doctor of this, and all other causes are ruled out. If she does have a diagnosis, then I would suggest moving on to Bob's Big Pocket Guide To Cluster Headaches. It has a lot of useful information and will help you out as a supporter and will help you learn all of the options for her care. Good luck!
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  27. if you are used to the large "m" or "h" tanks, you can get smaller, relatively portable "e" tanks for car/office. if you find yourself breathing deeply and then having to wait for the bag to refill before you can inhale again, you need a higher-flow regulator. you might also want to look at the very different O2 strategy recommended by oxygen expert Batch. I can't link you to it, but if you put the phrase "red neck" into the search bar at the upper right side of the page here, it will take you to the thread where it is described. be sure to look at that post about "extending imitrex," too. it is rare for people to need more than 2, or at most 3, mg per injection.
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  28. Hi! You need to read the files in the ClusterBuster files. There are a few other options as well, if you read through the things there, you'll find that there are several things that can be used to successfully bust her cycle, other than shrooms. Like the D3 regimen, Hawaiian Baby Woodrose Seeds, or RC seeds. But first you definitely want to read all of the files so you'll be sure that you're prepared. Is your wife on any preventative medications? Or any abortives? Welcome to the board!
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  29. The bad news is that for most people things don't get better on their own with age/time. For some they do -- maybe you'll be one of them. The good news is, holy cow, gosh, there are plenty of things that will help you. Most people would put oxygen #1 on that list, as an abortive for your attacks. Pharma meds such as verapamil as a preventive and injectable sumatriptan as a backup abortive are often effective. You really need to become familiar with oxygen and meds. In the ClusterBuster Files section of this board, you could look over "Bob's Big Pocket Guide . . ." Find the places that seem most relevant to you and start there. For strictly pharma stuff, google [Goadsby treatment of cluster headache] for a clear discussion. A list of recommended doctors appears as the first post at the top of this board ("General Board"). A good doctor makes a difference. Many docs won't/don't even prescribe oxygen, which is pretty close to malpractice given that all medical references list it as the #1 abortive. (You can set up your own oxygen system using welding oxygen, as about 20% of people with CH do, but an O2 prescription is a nice thing to have.) The vitamin D3 regimen that is described in that same ClusterBuster Files section has helped hundreds of people. Give it some very serious consideration. Busting is highly effective. Read the numbered files in the CB Files section to learn more about that. Try quickly drinking an energy shot, such as 5-Hour Energy, at the first sign of an attack. It can reduce the severity of attacks and sometimes even abort them. Strong cup of coffee might work, but the energy shots are generally better. Melatonin at night, starting at 9 mg and working up, helps many . . . CH still sucks, but you could be feeling a whole lot better.
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  30. Absolute garbage Shevel. I know that your bulls**t so called cluster patients (who you could not even teach what a cluster is) on whose blatant lies you got some coverage in medical journals are total fakes coached by Daniel. Quacks are a disgrace to the medical profession and even more so when they take advantage of vulnerable and desperate people. You anger me.
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  31. Daniel, stay in Cape Town and away from your father. He is a quack and you are a great marketer but you have both been revelead. Those videos are bulls!*** and you know that. None of them had clusters - they don't even know what a cluster is. I saw your father and got ripped off - buy a plate to relax my tongue and cure my clusters, it's the artery that causes clusters, etc. Load of crap I should have bitten of his finger when he stuck it in my mouth. And I know people who know both of you so you can't pull the wool over my eyes. These are intelligent people here and those who are desperate have us to protect them against people like you and your quack father. Stick to being a gym bunny and pretty boy and leave us sufferers alone. Warning to others: MRI - migraine research institute is Daniel Shevel - it's no institute, it's another branding excercise
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  32. Mr. Shevel never ever will stop shitting. His business model is just to much successful... He just needs a few patients every year in order to make a nice income. Logic tells he is able to get them when trying hard enough. The onliest we could do is kick him out off this site/ignoring him, giving feedback on his writings thus warning all others... If Mr. Shevel claims he being able giving cure to us, so it must be fact he knowing the root cause of our suffering, but he doesn't. 20'000 und per patient for operating WHAT? There is no justification charging such a ridiculous amount. Last year I had 3 major surgeries (all emergency) in at top hospital and did not even spend half of that money... This Mr. Shevel is well known also within other CH sites/portals having the same results/success as he is presenting here. Exactly the same bullshit results... Probably we should apply this very special surgery on Mr. Shevel himself just in order to provide protection for possible future attacks And now, better stop spending valuable time on this one... ****************************************************************************************************************************************************************************** ...and bevor I even think about trying his method, I may try the latest technique a newbie mentioned just TODAY: Masturbating during an attack newbie claims helping him abording CH. Having up to 9 attacks per day this youngster must be very potent Should I spend my money on Viagra instead on Sumatriptan nasal? Naturally I'm not able at any means creating more than 3 sessions per day ******************************************************************************************************************************************************************************* Success rate from this site and techniques used is high. I don't have figures but guessing far more than 50% of us achieve being pain free. The rest does get huge relief. The minor part (I guess, I do not have correct numbers) say about 10% may live with status quo but I'm not sure probably even less. Eventually a sticky message with a warning about Mr. Shevel does the job at least for this site. Talking even more about this guy is at the end of the day exactly what Mr. Shevel is locking for in order to get the one cluster head out of a thousand! ******************************************************************************************************************************************************************************* Shouldn't we lock Mr. Shevel in a prison cell, giving him cluster and a multi pack of Viagra? Worthwhile a try isn't it? (yes, I feel sad having to write like this but being nice on this one would be insane)
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  33. Mr Shevel, I don't have the energy or time to empty my brain of all that I have to say to you. I find it disgusting that you come here to try and find more ways to supplement your income. You know well you don't offer a treatment worthwhile to even try and you should know full well your results have been poor while costly to the patients you have cut up. Feel free to link your papers (not just a list of supposed papers). Feel free to link your testimonials. Mostly, would love for you to link a medical reason your cutting would work for CH. For full transparency, I plan on reading each with the sole purpose of preparing a stronger defense against your marketing efforts in CH patient sites like this. For you, if you are legit, your work would stand the scrutiny (which we all know it won't). Anyway, thank you for reminding us all you are still out there. We need to make sure we are letting everyone know the truth about your profit making endeavor.
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  34. Interesting story -LSD dangerous? How and when? Drinking an excess of milk may become dangerous to... -Recomending reading deep into this site in order to learn how we handle, abort and prevent attacks...
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  35. Dr. E, it took you a year and a half to come up with a response? Is business that bad? All those peer reviewed articles not beating a path to your door? Word of mouth from all those 'Cures' not working for you? Sheeesh
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  36. The folks there might be able to help you. That group is not well liked here, but that has to do with "politics" more than whether people there can answer your particular question. (Leaders of CHSG tend to fight against the alternative treatments -- "busting" -- discussed here, which is not appreciated.) The group I was suggesting is just called "Cluster Headaches." The top, pinned post at that group is about 5-MEO-DALT.
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  37. OK I am in , sign me up I will attend
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  38. Just look for register your journey in the app stores for iOS or Android. Please let me know what you think of it. Timeline isn´t perfect yet but hoping to find some help soon to get it better. But it does give already a nice view on attacks. And its easy to use I think. And if you need other buttons, just let me know and I´ll add them.
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  39. Jcf', I hope what you're doing now is going to help you. But . . . . Does "tried everything" include the vitamin D3 regimen that has helped hundreds of people (see the ClusterBuster Files section of this board)? Does it include busting (see the numbered files in that same section)? Is your oxygen system optimized -- high flow regulator, top-quality mask, best breathing strategies? If you were on verapamil, was the dosage high enough -- 960mg/day or more -- to actually work? Usually a mess of meds just creates a mess.
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  40. Well, since your O2 seems to be losing effectiveness, I would consider all those things. Some folks say the mask alone gives the 10-20% quicker aborts. Others have said that they get at least as good results from the "red neck" system I suggested you should look up. Higher flow rates are mostly important if you are prevented from using a fully-effective breathing method because you have to wait for the reservoir bag on the mask to refill. For some people, MM doesn't work but other substances do (LSD and LSA/seeds). The seeds are easy to get and legal to possess, and simple to process, and they generally have no psychedelic effects at all at levels needs to treat CH. The conferences are generally considered life-changing, or at least dramatically life-improving, events by people who attend. Info in the "Conferences" part of this board.
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  41. Shay, thank you for being a supporter!!!! I would suggest that you (or he!) start a thread in one of the other forums here (Share Your Busting Stories is a good one, even though you probably don't have a busting story to tell). Let us know -- as specifically as possible -- what he's doing for his CH (meds with dosages; other treatments); what seems to help and what doesn't. There are likely to be a bunch of things he can do to make his situation better. Isolation is very common, with many underlying factors, but knowing that his CH is more manageable is definitely a very good way to start changing that.
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  42. Hey Guys, First time on the site, first time posting. I've been dating a 5 year CH sufferer for the last year and have felt him getting more and more isolated due to his condition (coupled with unemployment). I am trying to get him more connected with his fellow CH community, do you think coming out for this would be helpful or overwhelming for him? Also, is this conference for CH sufferers only, or is it open to supporters to attend as well? Many Thanks! Shay
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  43. Welcome Keyser! I have two dogs and a cat too. My cat comes with me every time I hit the O2. He lays about a about a foot away, not asking for pets or anything. Just keeps me company. He has his own house to sleep in, but always knows when I head to the office for a bit of O2. Some have dogs that are their CH partners. But, it seems that the animal chooses it. However, I don't know that you could train one to keep you company but out of the way! They seem to just know. My dogs never even get up! They are great for PTSD though.
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  44. Hi Grrl! We have several members who are 'supporters'. It is hard. You want to help so much, but you usually can't help at all. And watching your loved one suffer is awful. I am glad that you realize that you need some support to. Just so you know, we love our supporters and the supporters who show up here for their loved one.
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  45. Good luck Good luck good luck. It doesn't always work in 3 dosis, my first time I only needed 1 and later I had to take 6 times the dosis. So it depends a little bit. But there are a lot of people here that can help you out how to dose, what to use and more. But try to keep record of your attacks, medicine use, MM and all other thing you to to feel better by using the app I've made for us. You can download it for free and use it to create a timeline that gives you a good view on how you have been doing.
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  47. Hello everyone!! Have you registered on the Clusterbusters “Patient Registry” yet? Over the years, Clusterbusters has built the largest worldwide patient database in the world. Become a member of the database and possibly a participant in a research project that will lead to better treatments and eventually a part of the cure. By completing this form, you are not registering for a specific study that is underway or that will start in the future. You are not agreeing to become a participant in anything. You are only agreeing to the possibility of being contacted in the future to ask for your participation. Research studies sometimes only require your participation from home. It may only require completing surveys or questionnaires. Some of you may have recently done this for the work underway at Yale University. Some clinical studies require your participation in other ways. Some may include travel. Each study has different requirements. Choice of participation is yours and that of the study investigators and does not involve Clusterbusters in any part of the process. This registry is open for everyone. There are no requirements of past, present or future choice of treatments or any particular cluster headache or human traits. People from all walks of life, all ages and every description, suffer from cluster headaches. We are presently involved in several ongoing research projects as well as several others that are in the long process of approval. As we are involved in research on an international basis, this survey is open to everyone worldwide. We encourage anyone with cluster headaches to respond and help inform others of its existence. As many studies focus on certain segments of the cluster population, episodics vs. chronics as an example, you may not be contacted for every study that is underway. Be a part of a better future for cluster headache patients and participate in our registry. As you will see again on the forms themselves, all of this information is and will remain completely private. The survey, all data and any and all future distribution is administered by the Clusterbuster’s Administrative panel and members of its medical advisory board. Information and people will move the research forward. Please be a part of this. Just the completion of the questions on this short survey, by the thousands that are included, helps gather important information. Please share this with others you may know that suffer from clusters. If you know of anyone that does not have access to a computer, contact us at info@clusterbusters.org and we will mail a written copy for completion and inclusion. To participate, please go to this link: http://tinyurl.com/n9ou73a Some of the questions may give you an idea of some of the projects we are currently working on and there will also be more information available at this years conference. Even if you can't make the conference, we'd love to have everyone here on the registry. Thank you Bob Wold Clusterbusters
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  48. Don't Miss the 12th Clusterbusters Conference!! This year's conference will start with registration and the President's Cocktail Reception on Thursday, September 14, 2017 at 5:30 PM. The speakers and presentations will follow beginning at 9am on Friday and continue to Saturday at 6pm. A farewell dinner will follow. Registration link: http://events.constantcontact.com/register/event?llr=asfwt7iab&oeidk=a07edp1qq7m9f077a1c
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  49. I think the same question can be extended to why is alcohol a trigger in cycle and not out of cycle. In fact why are in cycle triggers not triggers out of cycle. It speaks to our lack of understanding what is actually going on. Somewhere deep inside our neurophysiology something short circuits or gets out of whack. Whether this occurs due to an anatomic aberration, neurophysiologic hiccup or genetically passed on screwed up programming is yet to be determined. This is especially true for episodics who generally follow a predictable pattern. Something in the hypothalamus or nerve and vascular plexuses leading to it become susceptible to the trigger. Folks would likely still get clusters without the trigger but probably not as frequently. There are a lot of different factors that can contribute to the clusters it will be interesting to see if in our lifetimes a single mechanism of action is proven. The great work folks on this board do with presenting case studies of what works and what doesnt, reporting reliable triggers and treatments will provide fuel for researchers who can test hypotheses' and get a consensus on WTF is going on in our heads.
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  50. 'Reading all the blogs that in no way represent the experience I, and so many others, have had at the clinic serves no purpose for me.' Well, that says it all. You have posted on three of the Boards on this site. They all say the same thing. CURE. You want to speak at our conference even. You accuse this site of not honoring its' mission. In addition, you have provided no facts to support your stance. We will keep an eye out for Neurologist's testing and replicating this methed for sure. If it is proven to be effective as a cure, I am certain that we will all celebrate and post the outcome here. For now, perhaps you could provide facts? I am sure that my friend in South Africa, who has also undergone this treatment would be quite interested in reading them. I have had CH for over 40 years. I have had a ten year remission during that time. I have seen treatments come and go too. If this treatment proves to be a 'cure' without creating casualties along the way I might be interested. Facts please.
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