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Ricardo

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Ricardo last won the day on January 18

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  1. 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
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. Ricardo

    Clusterbuster piece for Psymposia

    Thanks Denny Any chance you're going to make it to Colorado this year?
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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
  15. Hi! I was just reading a comment of yours on the message board. You said hallucinogens. I just got some mushrooms. It will be the first time I will be trying them for headache relief. Just wondering if you can direct me in any way to some information on dosage. Thanks. 

    1. Ricardo

      Ricardo

      I would take between 1.5 grams - 2 grams of dried mushrooms, wait 5-7 days, take the same dose again, wait 5-7 days and then dose again one last time.  To take them you can just eat them but I find I get less nausea if I make them into a tea.  I bring a cup of water just barely to a boil and then pour it over the ground up mushrooms and some mint.  Let it all steep for 10 minutes then strain it out, drink the tea and throw out the mushrooms.  Good luck and feel free to ask more questions.

      -Ricardo

    2. Mindblown

      Mindblown

      Hi again! So I took the mushrooms, but was told they were very strong so I was scared to take too much. I have taken 4 doses now and although I do believe they have helped, I'm still getting headaches. They are only lasting 25 minutes instead of 2 hours, but they are full intensity. I also feel many mild headaches a day, with just heat and soreness but not a full death headache. I am going to take the last of what I have, but my question is, should I try a different batch of mushrooms??

    3. Ricardo

      Ricardo

      How much of the mushrooms did you take each time?  I have to admit, that I have heard "they are really strong" a lot of times.  Sometimes they are, sometimes they are not :)  It seems like it is doing something so I would keep at it if you can.  A number of people have reported slight success at first and better success the more often they do it.  If you can deal with the experience I would up the dose a little as well.  As long as you are feeling the effects of the mushroom I would assume that another batch will not be different.  If you seem to not be getting much more relief from the shrooms I would switch it up to some LSA containing seeds (Heavenly Blue morning glory or Rivea Corymbosa are my picks.  Hawaiian Baby Woodrose seeds work as well but you need to prepare them a bit of you want to avoid gastric problems.)

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