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Everything posted by Ricardo

  1. The conference was definitely pretty awesome. I have to admit I missed a number of the talks because of an unrelenting migraine but did a lot of connecting with people that I had wanted to connect with. I'm really looking forward to working more with the Psymposia crew and I will probably be doing a couple podcast interviews with people I met at the conference. I'll let you guys know when I know more. I got a chance to talk to the guy Pebbles was referring to that said he got cured of his clusters from stem cell therapy. He was a nice guy that had obviously been through a lot but I am pretty confident he did not have cluster headache. He said that after some sort of nasal surgery he ended up with a cluster headache that would last 24-7. As most of us know, cluster headaches don't actually last that long so it had to be something else. It sounded to me like he damaged some of the same nerves that are involved in cluster headache, but essentially the case was more about nerve trauma. I doubt the success with the stem cell therapy for him says much for most cluster sufferers but who knows, maybe some of the people that end up here with a condition that mimics cluster headache (like that guy) could someday see this as a therapy for them. I know he got it done at some sort of pain clinic and it did not sound cheap. -Ricardo
  2. Unfortunately I have had it happen a number of times and I know a few others have said the same. Hopefully this is a rare occurrence for you. -Ricardo
  3. Can you handle caffeine? If so, you might want to add in some guarana. it is a caffeine containing nut that is very popular in South America. For some reason guarana seems to protect against the gastric irritation that comes with Indomethacin. https://www.ncbi.nlm.nih.gov/pubmed/14669256 The caffeine might also help with whatever kind of headache you have and make the Indomethacin work a bit better. -Ricardo
  4. 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
  5. I was reading this last night on the FB page. Here is one doctors take on it. I think the truth is probably somewhere between "these drugs cause dementia" and "this is only true for elderly African American women". http://www.clinicalcorrelations.org/?p=6162 If people have a concern about the possibility of anti-cholinergic induced dementia they might want to look into the herb Melissa Officinalis, also known as lemon balm. It actually boosts cholinergic activity and has long been associated with boosts in memory and lowering of anxiety. It also is pretty tasty in big bong hits and will most likely help with busting anxiety http://www.nature.com/npp/journal/v28/n10/full/1300230a.html -Ricardo
  6. I read this article and thought it had some really good tips on how to get yourself in the right state of mind for a psychedelic trip. http://psychedelictimes.com/psychedelic-integration/achieving-set-in-set-and-setting-4-principles-make-most-of-your-psychedelic-experience/ Any other tips or ideas on how to increase the likelihood of a good trip? -Ricardo
  7. Someone else was having the same problem but I can't figure out why. Are you part of the CH facebook page and friend's with David Nickerson? It would be good to find a way to post these so even non-facebook folks can see these, anybody have any ideas? There are people besides me that these links DO work for, correct?
  8. I've been compiling the links to all the great videos that David Nickerson got for us. I'm still missing some so feel free to add any videos or pictures you come across! Thanks again David! The one problem with these links is that I am pretty sure you need to be a part of the facebook cluster headaches page to be able to see these. If you are not a member now is a great time to join up! Convention reception https://www.facebook.com/david.nickerson.56808/videos/1777445879136613/ Conference day 1 https://www.facebook.com/david.nickerson.56808/videos/1777823629098838/ Dr. Schindler https://www.facebook.com/david.nickerson.56808/videos/1778355825712285/ Mitch Post https://www.facebook.com/david.nickerson.56808/videos/1778373549043846/ Batch's O2 and D3 regimen https://www.facebook.com/david.nickerson.56808/videos/1777917449089456/ Dr. McGeeney and Eric Diamond, part 1 https://www.facebook.com/david.nickerson.56808/videos/1777861729095028/ Eric Diamond part 2 https://www.facebook.com/david.nickerson.56808/videos/1777882725759595/ Tyler Mann and Lady Ainslee Course https://www.facebook.com/david.nickerson.56808/videos/1778258985721969/ Dr. Schor https://www.facebook.com/david.nickerson.56808/videos/1778340495713818/ Joanna Kempner https://www.facebook.com/david.nickerson.56808/videos/1778272719053929/ Panel https://www.facebook.com/david.nickerson.56808/videos/1778388942375640/ Closing comments https://www.facebook.com/david.nickerson.56808/videos/1778407982373736/
  9. Seriously. It's been busy playing catch up after being gone for 10 days but that was one hell of an experience. Psyched to meet in person with old friends, meet a hell of a lot of new friends and connect with the Clusterbuster crew. I also had no idea there were so many busters in the Northeast. A regional conference sounds like a must!
  10. When I was about 24 I started having grand mal seizures in my sleep. No meds seemed to work and the whole thing went on for 2-3 years until I stopped eating gluten. Now it's been about 10 years, no seizures. -Ricardo
  11. I ended up in Austin extra extra early. If anyone is around let me know! -Ricardo
  12. This looks really interesting but I can't find the link between this and how it relates to clusters. Can you explain more? Thanks -Ricardo
  13. I don't have MS but I have done some research on it for a couple friends of mine. (I'll also note that in all my experiences with CH and CH sufferers over the years, I can't remember meeting anyone that had both MS and Clusters. Obviously it happens, but to me it does not seem like a very common occurrence.) Much of my research with Clusters has centered around an inflammatory substance called Tumor Necrosis Factor (TNF). This is one of many substances produced by the immune system. When you need it, it's great--it eats away tumors. When you don't need it, it can cause a huge inflammation problem and has been implicated in all sorts of disorders. High TNF levels have never been proven in Cluster Headache but I can't find one study that has explored the idea. I suspect that cluster sufferers have high amounts. The reason that I bring this up is that the psychedelic therapy is very good at lowering TNF levels, to the point that all hallucinogens that hit the 5ht2a receptor (the receptor that LSD and Psilocybin hit) are considered "super potent inhibitors" of TNF. I think even if it is just one part of the equation this reduction in inflammation helps tame down the clusters. With MS, high levels of TNF have also been found. The problem is, that when TNF has been lowered in these people sometimes MS seemed to get worse. There are some cases (mostly with rheumatoid arthritis) where people went on TNF lowering drugs and somehow ended up triggering an onset of MS that was not there before. Admittedly, the way the hallucinogens work to lower TNF levels is a very different way then the way prescription TNF inhibitors work, but whether or not it could produce the same symptoms is anybody's guess until we do more research. Searching the internet you don't find a lot of reports of people with MS taking psychedelics. When I looked (not super hard or for a long time) I found 2 cases. One was about a woman in the 1960's who had received legal LSD to treat her MS. Supposedly it did not work, but there was no mention of her actually getting worse. The other report was from a guy claiming his girlfriend with MS had taken 1 gram of mushrooms and thought that it had made her MS flare up. On the other hand, here is a person talking about clinics in Mexico that treat MS with Ibogaine, another hallucinogen somewhat related to the ones we use for busting. http://www.thisisms.com/forum/natural-approach-f27/topic24133.html I wish I could tell you that the psychedelics are good or bad for MS, but unfortunately I don't think anybody knows that for sure at this point. I do know that stimulating certain muscarinic receptors have been shown to be helpful for MS and some of the substances that I have found helpful for clusters as well. These are substances that you need to be pretty careful with, like Mandrake and Datura. Let me know if you are interested and I will share whatever info I have on it. Good luck, Ricardo
  14. I disagree. In my experience triptans will most definitely give me rebounds IF I take it numerous days in a row, but there have been plenty of times (and after close to 20 years of using triptans I can say PLENTY of times pretty confidently) that I have had a cluster, taken sumatriptan and did not have a rebound headache or increase in the severity of attacks. And yes, more than once I thought the same thing, stopped Sumatriptan for 6 months at a time and found no difference. Maybe this reaction is happening with you Denny, but I suspect it might be an individual sensitivity to triptans. Again, I disagree. I fully believe that taking opiates too many days in a row will give you rebounds, but I have had too many times where I ended up in the ER and the only thing that worked was opiates. The next day I did not get hit, and my attacks in general did not actually get worse in any way. I think this is important info because I think as a last ditch effort the opiates are very useful. If you end up in the ER, you are out of options and they offer you a shot of morphine should you turn it down because of the possibility of a rebound headache the next day? In my experience and opinion, as long as you have not been taking opiates much you will do yourself very little harm with an emergency shot of opiates. I would say that somewhere around 95% of the time that I take sumatriptan it gets rid of the cluster and does not in any way "rock me so bad" when it wears off. Sometimes the triptan does not work, I consider this to be a bad cluster and not sumatriptan rocking me. Triptans are not really released from any sort of receptor, they do trigger certain receptors to do certain things, but they are not actually released. The k receptor is a hallucinogenic opiate receptor and I have never heard of it being related to sumatripan or clusters. Do you have any info showing otherwise? In my experience this is not always true. I have taken sumatriptan, then less than 48 hours busted with psilocybin and it worked. I have done this more times than I can count. When I get to the point where I am taking sumatriptan for more than 2 or 3 days straight it seems to interfere with my bust and I need to make sure I get a good break from it. In my opinion, none of these statements are very helpful. You have your situation and other people have theirs. You can not guarantee any sort of reaction to anyone about anything. Telling people "stop triptans now" because they haven't worked well for you seems to assume that you know other peoples situation enough that you can tell them what meds they should just "Stop". That seems kinda arrogant to me. You can not say in any sort of surety that "triptans will set you up for disaster and a continuous headache cycle". Maybe you can say that about yourself, but there are a LOT of people that do not have this effect at all. It has been pointed out over and over on this site that we should all take as little sumatriptan as possible. That IS helpful. As far as "You are fooling yourself if you think they are helping" Again not very helpful and most definitely arrogant. You don't usually convince people of the merit of your ideas by calling them foolish. My bet is that if you do some serious research you are going to find very different ideas than the ones you have come up with. Maybe I am missing something though. I responded to that post earlier with a whole bunch of questions because I wasn't understanding what you were saying and I have to admit, after you answered me I was even more confused. Between the k receptors that are somehow receptors and molecules, the clusters being caused by clusters, the strange oxygen info, I could go on and on---it just doesn't seem to have much basis on any sort of factual evidence. The idea alone of K being a both a molecule and a receptor makes very little sense from what we know of biology, chemistry and science. Molecules bind to receptors because the molecule fits into the receptor just like a key in a lock. From everything we know, If the molecule and the receptor were the same it just wouldn't work--that would be like trying to fit a lock in a lock, instead of a key in a lock. I would research more about the receptors that get triggered by sumatripan and the receptors that are triggered by hallucinogens and look for correlations. -Ricardo
  15. Actually it is the other way around. Cocaine has been know for quite a long time to be an effective abortive for cluster headache. And no, you should not try it. http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4610.1982.hed2202069.x/abstract -Ricardo
  16. If you are taking Indomethacin it might be a good idea to add in some Guarana or Guarana extract. It is a caffeine containing seed that is very popular in South America. There is a study on Pubmed showing evidence that Guarana extract protects against gastric lesions induced by Indomethacin. I agree that Indomethacin is "hard on the guts" but from info I have read I think that might be putting it pretty lightly. Indomethacin has the potential to be very hard on your body, especially if you are taking it everyday. http://www.ncbi.nlm.nih.gov/pubmed/14669256 -Ricardo
  17. Making tea with your shrooms might help. Still tastes disgusting and might make you puke, but with it being in a hot liquid extract it will get in your system a lot quicker. (I think it would be quick enough that even if you puke you will still get the effect from the shrooms) Make sure you have a good chaser 5-MEO-DALT, 5-MEO-DMT and regular old DMT are all pretty different. Although 5-MEO-DALT has been professed as to being legal, I dispute that. The only place I hear people say that it is legal is within the Clusterbuster community. Everywhere else I read people saying if you get caught with it and the Man wants to charge you with something you can be charged under the federal analog act. From everything I have read I tend to side with the idea that it is illegal. -Ricardo
  18. I am not very familiar with Cesamet but it does seem to have a lot of similarities with another synthetic cannabanoid that I have experienced in the past, Marinol (AKA Dronabinol). Unfortunately I have never taken it while busting so I can't give you any personal feedback on that. What I can say about Cannabis in general is what Spiny said--When mixed with mushrooms it can make the experience more intense and most importantly to me, it can make your mind pretty clouded. I don't notice this effect at all if I smoke before the mushrooms kick in. Every time I take mushrooms I start by chugging down my tea, then grab my bong for a toke to prevent nausea. I have never felt that it interfered with a bust, and it would surprise me if it did. The receptors that the classical hallucinogens hit are completely different than the receptors that cannabanoids tend to hit so I have my doubts that anyone is going to find cannabis type drugs (synthetic or natural) blocking a successful bust. The biggest drawback that I have found with these synthetic cannabis medications is with the route of administration (pills). The problem is that the pills take a long time to start working (somewhere around 2 hours for Cesamet and Dronabinol) and then take an equally long time to wear off (sometimes up to 8 hours) In my opinion a better option is to smoke or vaporize a small amount of cannabis as it will work immediately and wear off quickly. However, I completely understand that for some people that's just not an option. If I was going to try it I think I would attempt to split the Cesamet pill in half (can you do that? If I am remembering right it was not so easy to do that with Marinol as it came in an oil filled gel cap), then wait a couple hours until it's fully kicked in and take your mushrooms (possibly a smaller dose). On a side note, I don't have much issue with ingesting LSD and then smoking cannabis. The stimulation that LSD gives me tends to fight off that "mind feeling clouded" effect. You might find that the combo of Cesamet and LSD work pretty well together, but I would still start pretty low in any initial experiments that you do. Good luck and keep us posted. Ask away if you come up with anymore questions! -Ricardo
  19. You are correct that Sumatriptan is essentially DMT with a sulfur molecule added on, but they are in essence very different drugs with very different effects. (water is essentially just hydrogen with 2 oxygen molecules added on, but you will have quite a different experience if you drink a glass of hydrogen compared to a glass of water.) As far as synthetic vs non-synthetic, you can have synthetic DMT that is made in a laboratory or you can have natural DMT that you have extracted from a plant. Both are still DMT. DMT may or may not be helpful for your friends headaches but unfortunately the only way she would be able to know is if she tried it. -Ricardo
  20. Some links I found. 35 year old woman with coronary artery disease has a heart attack after first dose of SQ sumatriptan. http://www.ncbi.nlm.nih.gov/pubmed/7783891 56-year-old female patient with migraine who experienced a myocardial infarction shortly after using sumatriptan, despite having had a normal cardiovascular evaluation. http://www.ncbi.nlm.nih.gov/pubmed/8682677 Risk of severe cardiovascular adverse events after the use of a triptan is estimated at 1:100,000 treated attacks http://www.ncbi.nlm.nih.gov/pubmed/20977405 42-year-old man with episodic cluster headache without history of coronary artery disease who was admitted to our coronary care unit for acute myocardial infarction after 3 h of subcutaneous injection of sumatriptan. http://www.ncbi.nlm.nih.gov/pubmed/16601942?dopt=Abstract If you keep looking there are more. Most cases, but not all involve people that already were experiencing some sort of heart condition. There are also a good amount of people reporting chest pain that turns out to most likely NOT involve any sort of heart problem. (There is something to also be said for the fact that just because you have not been diagnosed with a heart problem, that could still mean that you just have an UNDIAGNOSED heart problem) My take on everything I have read--if you have a pre-existing heart condition I would be pretty wary of taking sumatriptan. For the rest of us, be on the lookout for dangerous side effects but personally I am not too worried about it. There are a number of weird cases out there involving sumatriptan possibly having a negative cardiac event but with the unbelievably huge number of people that have at this point taken the drug with no problems, I'm not convinced it's something I should worry about enough to stop taking sumatriptan. I would however be very wary of mixing sumatriptan with certain meds (like verapamil). Anybody have any other cardiac info on sumatriptan, whether from research or anecdotal? -Ricardo
  21. I'm hesitant to post this because I know it may scare some folks (possibly unnecessarily) but all in all I think it should be said. A while back we had 1 person come onto the CH board and claim that Imitrex had messed up his eye sight somehow. Everyone blew him off as a quack but once I looked into it a bit I became concerned. When I reread the info that comes with sumatriptan I found that under the section entitled "Animal Toxicology and/or Pharmacology" there was a note about corneal opacities. It says that they tortured dogs to get us more info on Sumatriptan and that the results of the torture was this--"dogs receiving sumatriptan developed corneal opacities and defects in the corneal epithelium. Corneal opacities were seen at the lowest dosage tested, 2mg/kg/day and were present one month after treatment." It goes on to say that the lowest dosage tested was 5 times the normal amount for a human who took a 100 mg pill and 3 times the human exposure after a 6 mg subcutaneous dose. To me it looks like anyone taking a lot of trex should have their eyes checked for any sort of corneal opacities. What really sucks about this study is that seeing as how this was happening at the lowest dosage that they tested we can not really be sure that it is not happening with normal human amounts of Sumatriptan. I've had doctors tell me that Sumatriptan has been used so much that we would know about it by now if it was causing eye problems but that is just plain stupid. I have serious trouble believing that my general doctor or my eye doctor is going to know enough about sumatriptan to link it together with a vision problem. Much more likely that they would say "for some unknown reason you have corneal opacities." and call in the next patient. Anyone out there been taking a lot of trex and experienced vision problems? I would love more info on cardio problems that people have reported. How many people have we heard from saying they thought Sumatiptan had caused them heart problems? What type of cardiac events are we talking about? -Ricardo
  22. I think it works the other way around--I think in some ways CH may make you more likely to abuse substances as a self-medication. An under-active hypothalamus does not produce the right amount of endogenous brain drugs, so you seek them out on your own. I think that before we actually get to the point in our lives where we get the clusters our brains are just not making enough drugs and our brain's know it. -Ricardo
  23. A while back I'm pretty sure I had some good links talking about the amount of cluster sufferers that end up with PTSD but I can't find it. What I'm really looking for is the research that backs up what we talk about when we are saying "During our ongoing research, it has been discovered that an alarming percentage of people with cluster headaches also suffer Post Traumatic Stress Disorder as a result of the disease. Although it is common knowledge within the medical community that chronic pain can produce PTSD, until this recent study there had never been any associations made with clusters and PTSD. " Can anyone point me to this study? Thanks! -Ricardo
  24. You're welcome, I don't blame you for not wanting to draw more attention to yourself. Good luck and let us know there are any ways we can help.
  25. WTF is wrong with these asshats that want to pretend that they know your situation and what you need more than your doctor? Drug war hysteria indeed. What state are you in? I get a good bit more ketamine than that and no one raises an eyebrow except the insurance bastards that are determined to make a profit over helping people. Maybe get a script for Sumatriptan to keep them happy and sell it off to some cluster sufferer that actually needs it? Or you could just give us their info and we can all harass the living hell out of them? Let me know if I can help. -Ricardo
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