Ricardo

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. https://southernpainsociety.org/adverse-effects-and-clinical-trials-the-system-is-broken/ -Ricardo

Indomethacin users might be interested in this study that showed guarana to protect against lesions induced by Indomethacin. Guarana is a caffeine containing nut from South America and it is not hard to find. I would not be surprised if the caffeine actually made the Indomethacin more effective as well, but that's just a theory I have... https://pubmed.ncbi.nlm.nih.gov/14669256

@Bejeeber Admittedly, there have been very few clusterheads that have tried nitrous as an abortive so as far as working for other people we really don't know yet. But it works damn well for me

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)

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 )

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. https://southernpainsociety.org/adverse-effects-and-clinical-trials-the-system-is-broken/ -Ricardo

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. -Ricardo

@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 )

Bump @spiny@ThatHurtsMyHead @Bejeeber @Dallas Denny

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 )

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

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

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

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