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Posts posted by Ricardo

  1. Dr. Lawrence Robbins of the Robbins headache clinic wrote this piece about a year ago.  He has been one of the biggest prescribers of these drugs and at this point is saying that "Some headache providers feel that the CGRP monoclonals are safe and adverse effects are infrequently encountered. Others believe, as I do, that the mAbs result in a number of deleterious effects."

    He also said "After assessing the various post-approval lines of evidence, there are signals that the following adverse effects may result from the use of CGRP monoclonals: constipation, anxiety, injection site reactions, weight gain or loss, worsening hypertension, increased headache, insomnia, depression, hair loss, joint pain, fatigue, irritability, muscle pain or cramps, nausea, rash, sexual dysfunction, and tachycardia (or other heart irregularities).  Most likely there are others as well.  In addition, there have been cases of reversible cerebral vasoconstriction syndrome and stroke. Angina and myocardial infarction have also been reported. Thomas Moore, a leading expert in the acquisition of adverse effects of drugs, published a review of the CGRP monoclonals in the online journal QuarterWatch. QuarterWatch utilizes various resources, including FDA reports and published post-approval studies. (5) The report cites the “sheer number of case reports,” and concludes that “…it is likely that adverse effects of this migraine preventive were underestimated in the clinical trials.”

    These meds have now caused at least 40,000 serious adverse events and the number of people that I have talked to that completely regret taking this medication is huge.  Some of them are still suffering long term effects from it.  

    And for what it's worth, I agree with Dr. Robbins.  If we can have a medication that has this many bad side effects but prescribers still end up convinced that the worst effects are mild constipation, than our system is broken.  

    Once again, cluster headache patients will need to rely on each other to keep ourselves safe.






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  2. I'll admit, I have a bit of a fear that the attempt to increase trust on these drugs by not talking about and downplaying the risks could seriously backfire.  It doesn't matter how great the meds are for some, if they produce enough life threatening reactions there will be a push to remove them like they removed the Fen-Phen drugs.  

    When public perception of the drug goes from "barely any side effects" to "it might kill you and people have known this for years but we won't talk about it" it gets attention.  If it happens too quickly it sets us up for a huge public backlash on these drugs and the people that have promoted them, and that sets us up for people calling for these meds to be taken off the market.

    My humble opinion is that if we take things as it comes and admit science as it is discovered we end up with less of a "shock and awe" effect and we have less potential of a public backlash.   I encourage people and groups to reexamine their stance on this.   


    -Brendan (AKA Ricardo)

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  3. On 6/1/2021 at 3:27 PM, spiny said:

    Hey Ricardo!

    Are they wanting questions on how prescribed meds interact with MM and such? Questions on which meds are okay with MM and RC? 

    I want to help, but am somewhat at a loss here. The only big one I know of off the bat is the licorice root protocol and MM. What is safe, if anything.

    Please, give me a bit more to go on. 

    Thanks! :)

    Hi Spiny!

    Ben's specialty is pharmaceuticals and psychedelics, so anything in relation to that.   Questions about which meds are okay with LSA containing seeds, MM and LSD would definitely qualify.  Also things like the possibility of serotonin syndrome, what medications have the ability to "block" receptors, and questions about tryptamines in general would all qualify as well.

    I am not so sure how much he knows on herbalism and things like licorice but a good friend of mine teaches herbalism courses at UMASS so for that I am sure he can give us some good info on it.  But I have to admit I am out of the loop on this one and did not know that anyone had come up with a "licorice protocol"  Can  you send it to me in PM Spiny?

    And on the subject of questions that he may not be able to answer, If people have questions that he can not help us with, I'll still try like hell to get the answers from somebody so don't hesitate to ask anything :) 

    -Brendan  (AKA Ricardo :rolleyes: )

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  4. Dr. Lawrence Robbins of the Robbins Headache clinic recently came out with an article on the CGRP mononclonal antibody drugs such as Emgality.  He has been one of the biggest prescribers of these meds and to me, he seems like the most reputable, qualified doctor that we have in headache medicine right now.

    Technically the subject of his article was not the CGRP drugs, it was more about the system that we have in place to get accurate info to patients about medications.  And he titled the article "The system is broken".  And he used the CGRP meds like Emgality as an example of just how broken the system is.

    He says this because we originally were told that these meds were about as close to side effect free as you can get, but now we are seeing a very different reality.  He says that at this point we have close to 6,000 cases of serious adverse events, meaning that people either ended up with a life threatening condition or needing hospitalization.  He called this amount "staggering" and he also said it is the tip of the iceberg and that in reality, the numbers are most likely much much higher. 

    And if you listen to the huge amount of patients that have had horrible reactions from these meds then what Dr. Robbins is saying makes sense.  Because you find that most of them have doctors that are not believing them when they report problems.  The only probIems noted in the original literature was constipation, so when people come in saying that they all of a sudden have crippling anxiety and their hair is falling out many doctors just blow them off.   I know when I tried to tell one doc about some of the newer information she called me a conspiracy theorist.  I'm sure there are quite  few others that have had similar experiences. 

    So at this point it seems that it is on patients to save other patients.  We have known most of this info for close to two years now, so it's apparent advocacy groups and most medical proffesionals are just not going to talk about it.  Hopefully this will change when the meds come out with black box warnings, which is something that Dr. Robbins told me he expects to see happen with these meds

    The CGRP monoclonal antibody drugs are an important option to have in our arsenal, but they pose a serious potential for harm if doctors are not aware of the side effects that can come up.  

    And in all situations we need to be vigilant in our search for truth, even if we don't like it.  

    Here is the article Dr. Robbins wrote.  



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  5. The times that sumatriptan pills work for cluster is when you are in cycle where you know that you are going to get hit at a certain time and can take it an hour beforehand.   I have warded off more night time hits than I can count by taking a 100 mg sumatriptan pill before bed.



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  6. @BejeeberI'm not so sure about triggering a cycle or not, but pretty much everything that dentistry has and does triggers a serious cluster for me.  

    But something that might be looking into as an option is nitrous oxide.  I have been getting nitrous at the dentist for the past 4 or 5 years and never once had a cluster break though.  

    It has been successful enough as an abortive that I got a whipped cream maker so I could take nitrous at home and it has been unbelievably helpful.  I know a couple times it has kept me out of the ER.


    -Brendan (AKA Ricardo :) )


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  7. Hi Folks :) 

    I've been talking with Ben Malcolm (https://www.spiritpharmacist.com/about-me) about doing a piece on cluster headache meds and interactions with psychedelics and it sounds like they are going to go for it.  They were already planning on doing a piece on migraine meds but after hearing about the huge amount of evidence behind psychedelics for cluster headache he decided to make it a piece on cluster headache.

    One thing he could really use is a list of frequently asked questions so I am trying to help him out with that and I figured the best way to get a good list is to ask the community.

    Any and all questions are appreciated.  I'm sure he won't address them all, but the more questions the better.  Feel free to private message me with any questions that you don't want to post.

    Thanks for helping out with this! 


    -Ricardo   (AKA Brendan :D)


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  8. 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.


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  9. 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.


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  10. 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.  




  11. On 6/12/2017 at 4:02 PM, Batch said:


    There is sufficient evidence to say cluster headache (CH) is an autoimmune disorder just like MS. 


    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?



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  12. 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.



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  13. 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.


    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?


  14. 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 :)



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  15. 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.






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  16. 10 hours ago, Heavenly_Blue said:

    I figured out 5ht2a agonists lower tnf alpha by searching on pubmed


    Truthfully I found the info the same way.  I heard an anecdotal report that I did not believe it so I researched to try and find out if I was correct.  Turns out I was not.  You can downplay the results if you want, but I have yet to find another "superpotent TNF inhibitor"  



    "There is still not enough evidence to support their use for autoimmune conditions. Yes, I am aware of the risk of infection with humira. Do you know what its like to take a dump with no colon? My friend with chrons does. And trust me, he's not snorting K or dropping acid to treat it. I suggested curcumin earlier, which also is a strong anti inflammatory agent because it has decent therapeutic potential, but little risk for side effects, cognitive or physical."


    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)



    Bottom line, a licensed physician should still be the first opinion we consider. They can run expensive tests and have years of experience treating folks with similar symptoms. You just have to find a doctor you trust, just like you need to find a mechanic that you trust to fix your car.

    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.  


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  17. 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.


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  18. 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.) 




  19. 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.


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