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Ricardo

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Everything posted by Ricardo

  1. Ricardo

    Ketamine Infusion

    I agree. Lots of pain clinics will tell you that you "need" a certain number of days but this is definitely unproven. My bet is that it is different for everyone and that different people need different amounts. Some people seem to get by with just intranasal ketamine instead of infusions. -Ricardo
  2. Ricardo

    Need to vent about something I saw on reddit

    My unpopular opinion is that videos like that are helpful for the general population to see and understand what we go through but I don't understand how it's going to help another clusterhead. We all know all too well what a cluster headache is like. I completely understand your feelings on this. -Ricardo
  3. Effects of Psilocybin on neurogenesis, a talk by Zeno Sanchez-Ramos. A little dry but good info. One of the more interesting things found in this study was that Psilocybin was growing new brain cells, but not from one dose. Not until they gave 3 doses--One dose a week for 3 weeks did they find this as a result. This may point to better clusterbusting relief if taken on this schedule (or maybe not...) Even if it did not up the effectiveness of the mushrooms, I would bet money that it WOULD help fight off depression. I found this extra interesting because I take my mushrooms once a week, for three weeks, then take a week or two off. http://www.youtube.com/watch?v=QRNSEG1DY2s&feature=youtube_gdata_player -Ricardo
  4. Ricardo

    Has melatonin made CH worse for anyone?

    If I take any amount of melatonin I wake up with a raging cluster. You're not alone. -Ricardo
  5. Ricardo

    CBD

    Not that long ago Forbes posted an article about cannabis for migraine prevention. It got ignored by all the headache advocacy groups (for SOME reason that I will let you all figure out on your own) but I am posting it here because it did include some cluster sufferers. It was a small study but it found that half of the cluster sufferers had better luck using a THC/CBD combo than using verapamil. It was a whopper dose, from what I can tell it looks like 100 mg THC and 100 mg CBD combined. One interesting thing that was noted was that the cluster sufferers who got relief were the ones who had migraine as a child. The study was done by Dr. Maria Nicolodi, an Italian researcher that I have been following for a while. I have a lot of respect for her and have seen a number of valuable studies done by her. Here's the link- https://www.forbes.com/sites/daviddisalvo/2017/06/29/marijuana-treats-migraine-pain-better-than-prescription-medication-study-finds/#73190af53700 And here is some more info on the study- https://www.ean.org/amsterdam2017/fileadmin/user_upload/E-EAN_2017_-_Cannabinoids_in_migraine_-_FINAL.pdf In regards to anecdotal experiences, I know one person that has had multiple brain surgeries that were not very successful but he has now gotten relief by vaping CBD as a preventative. On the other side of the fence is me, if I take CBD it is one of the worst cluster triggers I have. High dose THC works pretty well for me at times but I stay the hell away from CBD at this point. I am pretty sure that in this regard I am just (once again) the oddball. I have not met anyone else that has ever said that CBD triggers their clusters. Hope this helps. -Ricardo
  6. Ricardo

    Indomethacin?

    Moxie girl is right, Indomethacin really messes up some peoples guts. Some people can avoid the problems by taking it with food but others have a problem with it no matter what. One thing that has been shown to help with the stomach problems that indomethacin can cause is guarana. This is a caffeine containing nut from South America and is easy to find online. The caffeine might even make the Indomethacin work better. https://www.ncbi.nlm.nih.gov/pubmed/14669256 -Ricardo
  7. Ricardo

    Cluster headache and multiple sclerosis

    This is something I've heard people say as a suspicion but I've never been able to find any study investigating it. Do you have any info on this? -Ricardo
  8. Ricardo

    Gammacore for Chronic Cluster Headaches

    The doc makes a lot of good points. Probably the best one is to try and get yourself to the conference. It might just change your life. I understand completely the lack of funds problem, you might want to look into the scholarship program clusterbusters has set up to help people who can't afford the trip. I have had clusters for about 20 years now as well. When I first got diagnosed the only things that seemed to help were triptans, opiates and sometimes cannabis. The opiates worked if I took a whole lot, (at first)... but it did not take that long for the situation to change for the worse. Before I knew it I ended up in the situation where the only time I was not in pain was if I was on opiates, and even then I was still in a shitty mood. I never had enough meds, had very little energy and I just went back and forth between cluster headache, migraine, cluster headache, on and on they went. Most of that changed about 7 years ago when I had my doctor changed from someone who had no idea what they were doing, to someone who actually had a clue. I was taken off the opiates and put on an intranasal ketamine spray. It has worked to abort most clusters, when it does not completely abort them the dissociative effect makes it actually pretty bearable. (This is something that I never really felt was possible, the idea that you can have a cluster headache and think about anything besides the cluster seems bizarre, but for me it has been true) The ketamine also seems to have a preventative effect on the clusters as well. I get so many less clusters it is ridiculous. My migraine attacks are still there but don't knock me down as much. Depression has been kicked to the curb. Before the ketamine I was in the ER almost once a month (not that it really helped) but since being prescribed ketamine I have not had to go once. And while I agree with the doc that you should get off the opiates, I would not blame you if the idea of it scares the hell out of you. One of the more amazing things that I found with the ketamine was that the lack of opiates never bothered me, not once. Other people have reported that ketamine has worked as an exit strategy for opiate addiction so this is not so surprising. Some would say this is just trading one drug for another but it is quite different. Most times I will go a month or so between ketamine prescriptions and still find that it helps my chronic clusters. Hope some of this helps. Any questions feel free to ask. -Ricardo
  9. Someone asked me recently about the piece I wrote for Psymposia on Clusterbusters and I was embarrassed to realize that I never posted it here. Here it is. Psymposia has a lot of other great info as well, check them out if you get a chance. https://www.psymposia.com/magazine/psychedelic-survival/ -Ricardo
  10. I'm glad to hear you have been getting relief from your pain. I don't doubt that you have clusters, but with the neck massager working so well you might want to look into the whether or not you have cervicogenic headaches as well. https://americanmigrainefoundation.org/understanding-migraine/cervicogenic-headache/ I think the problem that you are going to have here is that you were never actually diagnosed with any sort of parasite. Maybe you did have one but it's hard to go on the assumption that you did just because you felt like that's what happened. Complicating things is that there have been people who have gone into remission for a year or more without much rhyme or reason to it. One thing that I am confused with is that you said you have been dealing with CH for 10 years but that the big thing you think that is the problem happened 1 year ago after a whole bunch of antibiotics. What about the other 9 years? Am I missing something? -Ricardo
  11. Ricardo

    Clusterbuster piece for Psymposia

    Thanks Denny Any chance you're going to make it to Colorado this year?
  12. Ricardo

    Anesthesia

    Thanks Spiny! I'm glad the procedure went well for you. I agree that a pre-op talk stressing the importance of the protocol you need can make all the difference in your experience. In terms of anesthesia, if you need it again Propanolol might be worth inquiring about. I have heard more than one buster claim that it had been helpful for them and the Chicago Headache Clinic considers it as "occasionally helpful for preventing Cluster Headache. (there have actually been reports of it preventing clusters since 1972 but for some reason it is never mentioned) If you need anesthesia again it might be a better option than some of the other anesthesia drugs. In regard to nitrous oxide, Quite a while ago I got pretty sick of all my dental work. It is always complete torture. It doesn't matter if it is a cleaning, a cavity or a root canal--they all leave me in excruciating pain regardless of novicaine and then I always leave with either a cluster or a migraine. So I started looking into nitrous oxide and had the same thought that Jon had, that it would probably be a trigger. I was surprised to find that the only info I could find on nitrous and clusters was a report on Erowid by a high school kid that had clusters. Truthfully it gave me a lump in my throat, thinking about high schoolers having to deal with chronic clusters. That is just wrong and eggs me on, we need to change this situation. It is simply unacceptable. So the report I found by this high schooler said that he had chronic clusters and managed them with nitrous oxide. (https://erowid.org/experiences/exp.php?ID=23397) He said that he would bringe a small nitrous "cracker" (device used to open a small nitrous cartridge) and any time he felt a hit coming on he went to the rest room and took some nitrous, claiming it worked every time. After looking into it I realized that his claim was not that weird. Nitrous is in the same class of drugs as another cluster drug, ketamine. Both drugs are NMDA receptor antagonists, both lower nitric oxide levels, both lower TNF levels and both are known to be very effective for pain. Hell, in some countries they give nitrous oxide to women for childbirth. So I was at least convinced that it was not going to trigger an attack for me and I made the appointment with a new dentist. I had 2 or 3 times where I went in and everything worked great. Not long after the shot of novicaine they would put the nitrous mask on and I would experience very little pain and no cluster or migraine afterwords. Then one day the hygenist goes to give me a shot of novicaine (before I get any nitrous) and puts the needle straight into a nerve, I'm guessing she hit my trigeminal. Holy shit instant kip 9 cluster! I pushed the lady off of me and jumped up looking for my bag that had my sumatriptan shots. I found it and was fumbling through it, blurring vision, eye tearing, red hot poker love smashing through my eyeball when the hygenist walked in with the nitrous. I gave up on the sumatriptan, and told them to put me on full blast. Luckily they complied. Truthfully they looked so damn scared and in shock of the situation I think that I think they would have done whatever I asked at that point. Within seconds of the nitrous the pain ramped down. A full minute or two and the pain was 100% gone for the rest of the day. Since then I have made them put the mask on before they do anything to me. They always try to wait on it but I give them the look and state "NO ONE touches me until you put the mask on." Thanks again for sharing Spiny -Ricardo
  13. Ricardo

    Autoimmune clusters

    The reason that I put that out there is not to convince someone to try something on my theory, it is to remind people that there are more options than just the ones listed and that a couple of them a doctor can prescribe for their clusters. One neuro that prescribes both Ketamine and cannabis for migraine and clusters is actually a board member here at Clusterbusters. The experiences that he has reported from his patients do not really match the experiences you have seen in your office. Very little abuse and very few problems with it. Myself, over the past 7 years I have only gone down in frequency and amount. I was taking twice as much but my headaches got better and on my own I decided to cut it in half. I have also talked to numerous migraine and cluster headache sufferers who have also been taking it for years with no problems. And yet people seem hesitant to admit that they have it prescribed. Probably because every time it gets brought up people talk about it like it's some big debauchery thing instead of a legitimate medication for clusters. Before I gave a talk on Ketamine at the CB conference two years ago I thought I was the only one on it. Then I gave my talk and person after person came up to me to whisper that they too had it prescribed and that it was seriously helpful, sometimes lifesaving. But that they were going to tell no one but me. When we talk about substances as a "habit" or as "snorting k" it deligitamizes the very real info and experiences that have shown these things to be medicine. It also gets people to not want to mention the medicine for fear of judgment, making it so accurate info on the subject is hard to find. That's why it irks me when people talk about ketamine abusers and chronic pain patents as if they are the same group of people. Both have issues that they would love to run from but many of the chronic pain patients find ketamine has at least somewhat made their situation better. Not because they are bombed all the time but because the situation that they wanted to run from is now manageable. From what I have seen that's when the last thing people want to do is dissociate, instead they want quite the opposite--to get back to their lives. So far, the experiences of ketamine users for headache disorders have backed this up. To me the way to go is to put out all the options so people can decide for themselves. Truthfully I am not against pharmaceuticals. I think all drugs have their place but that with the huge differences in people and situations we need all options listed as often as possible. As far as substance abuse (especially cannabis) ruining lives... Are you really sure that's what's going on? Most research I have read points to the idea that substance abuse is a symptom of a bigger problem in someone's life, not the actual problem. -Ricardo
  14. Ricardo

    Autoimmune clusters

    You sound really pissed here. I am just giving people more information so they can make an informed decision for themselves. Nothing I said was untrue. Most people on this site seem grateful for more information, not less. You also seem like you have seriously fallen prey to drug war propaganda. If you are really going to say that you should try a pharmaceutical that might increase your chance of a life threatening infection instead of cannabis I'm guessing you don't know enough about cannabis. And if you take a drug for a condition it is not called "a habit". It's called taking your meds. And no I don't know what it is like to have Chron's. Either do you. Your friend does and my friend does. What's your point? (And I would advise Turmeric over curcumin any day. 1 gram a day, freshly chewed up) I agree that you should get an opinion, but remember that it is just an opinion. Tests and more info is great but quite a few of us have found that when they take the meds that most doctors prescribe they are worse off then before. Most times I have gotten more accurate from members of this site than I have from doctors. Remember that you are on a Cluster headache page that most people come to because doctors know almost next to nothing about their condition. In fact the only way I was able to find a good neuro was through this site and I have been dealing with this since 1998. My bet is that we will accomplish more by working together and sharing info instead of arguing but I think that is going to be up to you. -Ricardo
  15. Ricardo

    Autoimmune clusters

    Actually the way I found out that hallucinogens lower TNF so well is from talking to a Chron's patient that was not getting enough relief from pharmaceuticals. He swore LSD was the thing that worked best for him. My point really though, was that there are substances that may possibly work on both disorders making it so you can take less drugs altogether. I have been on prescription ketamine for clusters for close to 7 years now and have found it to be extremely helpful. It has also shown a lot of promise for fibromyalgia. (Not to mention that I would bet that the stimulant effect that comes with the low doses used for cluster would work very well for narcolepsy.) And I'll take a cannabis habit over most daily pharmaceuticals anytime. Humira in particular comes with some pretty serious warnings in regards to lowering your resistance to fighting infections. -Ricardo
  16. Ricardo

    Autoimmune clusters

    Some of the more potent TNF inhibitors are the drugs we use for clusters. All the classical hallucinogens are thought to super potently inhibit TNF. Caffeine, cannabis and ketamine inhibit it as well. (cannabis and ketamine have also gotten labeled as "autoimmune modulators" because they tend to increase or decrease the immune response depending on what your body needs.) http://jpet.aspetjournals.org/content/jpet/327/2/316.full.pdf -Ricardo
  17. Ricardo

    Diet and Clusters

    The only time I tried this type of diet my clusters came out in full force. I agree that if you are allergic to certain foods it will make your clusters or migraines worse, and there is a little evidence that some migraines could be connected to food allergies but as of right now there is very little evidence to connect diet with cluster headache. Over the years I have heard a lot of people go on different diets but very few of these people ever seem to get long term success. There have been a number of people who have thought the diet they were on was working, only to find out what really happened was that the clusters went into remission. I hope this is not the case for you, but I hope you can understand that sometimes chronic cluster headache goes into remission and many times people can not figure out why. Maybe the diet you went on stopped the clusters completely, maybe you went into an unrelated remission, maybe food allergies changed you from a chronic to an episodic sufferer. Unfortunately at this point there is no way to tell and 3 months of no headache does not necessarily mean that you are "cured". I hope so, but it could just be that you are in remission. Keep us updated as time goes on. -Ricardo
  18. Ricardo

    Psychedelic Science 2017

    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
  19. Ricardo

    Cluster Headache Followed by Migraine?

    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
  20. Ricardo

    New CB with a question.

    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
  21. Ricardo

    Dr Elliot Shevel

    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
  22. Ricardo

    Long term Benadryl concern

    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
  23. Ricardo

    Having a good trip

    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
  24. 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/
  25. Ricardo

    2016 Austin Conference videos

    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?
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