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Everything posted by Ricardo

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


    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
  5. 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
  6. 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
  7. 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 th
  8. 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
  9. Thanks Denny Any chance you're going to make it to Colorado this year?
  10. Ricardo


    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 mi
  11. 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
  12. 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
  13. 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
  14. 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 com
  15. 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
  16. 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 re
  17. 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 pre
  18. 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
  19. 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
  20. 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 cl
  21. 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
  22. 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
  23. 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?
  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. Sch
  25. 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!
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