Ricardo

It IS a good case report of a person's experiences with CH and does have good ideas for people to explore, I will say that. The more people write about their experiences in detail the more info we get, which is awesome. Just good for people to remember that this is one person's experience and that if the ideas he is bringing up seem intriguing they should research the ideas a bit themselves first. Thanks Tony! like I said, This does have good ideas for people to explore. -Ricardo

I have to admit, I did not find this piece too helpful. There is definitely a lot of accurate info,but he mixes it up with a WHOLE LOT of random junk that has not been proven at all, and put's it out there as fact. This, to me, is some of the more dangerous kind of info--when 70% of what you are saying is true people start thinking that leftover 30% must be true as well. Examples- A cluster headache is both an oxygen deprivation headache and a vascular dilation headache which has its origins in an overactive REM sleep or sharp transitions from REM sleep or an impulse from the hypothalamus or subconscious whereby there is sudden dilation of the carotid artery and surrounding vessels in the brain together with heightened electrical activity in the brain causing inflammation of the trigeminal nerve producing forehead pain, eye pain, side of the head pain, temple pain and back-of-the neck pain. -we do not yet now what causes or "is" a cluster headache. Saying a cluster headache is an "oxygen deprivation headache" is complet conjecture. (and seeing as how there are CH patients that do not repond to O2, it would seem that this is not true) Truthfully, if I went through and picked out all the stuff that is based on nothing more than this guys experiences and NOT based on facts that have been proven I would be here all day...I'll give some highlights instead He says these things set off clusters- -eating pork, sausage, ham, red meats or turkey especially for dinner. (I missed that study) -an imbalance of brain chemicals; ie too much serotonin and not enough melatonin (This is far from proven...) -an overactive and unsettled subconscious mind that manifests itself with awakenings and/or vivid dreams. (um...what? How did this get proven?) - the use of the two dietary landmines NutraSweet and Equal. (evidence that this may be true with migraines but I have never been able to find any study at all on clusters and aspartame. I guess it doesn't matte, that shit is toxic even if it doesn't give you a cluster) -seasonal stresses like going out to mow the yard, or taking a ride in the convertible, or raking the fall leaves or having the sun break through the blinds early on a summer morning, or going down to the beach for a beer on a warm summer night, or having a red wine in front of the fireplace on a cold winter's night. (this is list of completely different things and to me makes no sense at all. Mowing the yard and getting a cluster and having a beer on a warm summer night causing a cluster are the same root cause--Seasonal stress? Seriously?) Other tidbits that don't make sense-- -Taller than 5'8" is a risk factor for cluster headache. (um....?) -Another risk factor- Being a reflective thinker and/or reader, or doing detailed work like watch repair or accounting (missed that study too) - Do not consume caffeine after lunch. (I'm missing studies left and right..) -A number of things that he recommends are triggers for me, only a couple examples are hops, theanine melatonin and valerian. In his list of herbals he says both lemon balm and "melissa" can help. These are the same plant. I only bring this up because it shows that once again, this guy has not done his research but wants to tell everybody about it. I love lemon balm. Never helped my clusters one bit though. -Take Petadolex, the safe form of Butterbur, but the cost of treatment is $50/month for four months before results are seen; this is far beyond my budget. (I have heard good things about this with migraine, but there has been no studies done with clusters. None) -You should " Eliminate eggs as these contain/produce cholesterol giving one a bad lipids report" -Use aromatherapy continually throughout the day. (I am a huge fan of aromatherapy, but this is kind of like saying "use drugs continuously throughout the day" Wrong drug, wrong aromatherapy and you are a hurting puppy) There is so much here that is complete conjecture...This would be more helpful if he framed it as "This is my experience and this is what has helped me" Instead he makes all sorts of assumptions that have not been proven, mixes it with personal experience and put's it out there as if all of this has been proven. Like I said before, the dangerous thing about this is that it has enough true info to make people think that this guy has actually done his research--which he clearly has not. -sorry for being so down on this, but I thought I should share my thoughts before someone goes all out and try's everything this guy says because they found a few nuggets of wisdom. -Ricardo

Doc, thank you so much for that. Hit the nail right on the head. We are all desperate for some sort of help and people like this take advantage of that. It's so easy to say "but maybe! Maybe this might actually work!" My thought is maybe it does, and maybe in ten years when you have had that long of reduced blood flow to your brain you won't end up with serious cognitive problems. Truthfully you could come up with a billlion possible side effects that could happen because know one knows what this will really do. Elliot Shevell sure as hell doesn't. Ligating arteries and branches of the Carotid? As in lets do an experimental procedure to get less blood to your brain and see what happens in 20 years? Like the Doc said it's "NON-INVASIVE" (oooh....gamma rays are even less "invasive" maybe we should try that next )Not my kinda experiment. And cutting facial muscles? Sounds similar to an awesome therapy where you inject botox into facial muscles to get rid of migraines or clusters...unfortunately the makers of this therapy did not anticipate that when you paralyze facial muscles you end up getting a decrease in the strength of emotional experiences. The difference is that botox actually wears off... http://www.livescience.com/8325-botox-limits-ability-feel-emotions.html Bottom line to me--these people have half assed ideas on the origins of cluster headache that have not been proven in any way shape or form and they want us to be the guinea pigs so they can get a paper published. Don't let the pain and desperation of our disorder make you reach out for unproven therapies with unknown consequences. Patience is a very hard thing for people who have our disorder, but that is what I encourage. Patience and a buttload of hallucinogens. We are entering a whole new era of technology. We have improved the technology that we use to make technology to such a degree that our rate of innovation has skyrocketed. Remember the Jetson's? What was the one thing that is in the present that the Jetson's did not predict? The internet. The friggin internet. It changed everything everywhere real quick. It made it so that every type of technology and information sharing got a millionfold boost in productivity. And it was something that we did not predict at all. We are going to see some crazy shit in our lives (assuming we don't give up our lives to name seeking researchers in the name of science) and it is crazy shit that we can even begin to predict. Innovation is getting crazier and crazier and faster and faster. I predict we will have some real therapies and real answers if we can just hold out and not let this disease bring us down. (hard, I know) Elliot Shevel and his methods are dinosaurs. Patience and a buttload of hallucinogens and we will get through this. -Ricardo http://www.forbes.com/sites/singularity/2012/06/25/most-innovative-decade-in-history/  Thanks again, Doc. You might have just saved somebody from experimental surgery.

This was brought up not too long ago... https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1366151756/11#11

definitely one of those "won't know till you try..." I am one of those folks that can have one drink, but not 2. (usually, I don't try often...) This is the same for me...Seems like the hard alcohols are the easiest on me...and it kinda makes sense. When they talk about "triple filtered" and all that it really means something. When you filter hard alcohol through activated charcoal it removes a bunch of impurities that I would not be surprised to find contribute to a bad CH. I would recommend some really high grade, expensive booze if he's going to try the test. Good luck and give him a happy birthday -Ricardo

Actually, I guess that last question doesn't matter much...Looks like the smallest amount that you can get really is going to cost around $22,000... I guess it's back to that "tracking down hard to find illegal drugs so that I can have some sort of semblance of a functioning life" thing. It's been a rough couple of weeks....

So Spectrum Chemicals has it but won't sell it to us. My question is this--what situation/person/company would make it so they WOULD be able to sell it?

You just made my day

When I mentioned that this trick works for some people to my Doc he had an interesting idea--IV fluids. Never tried it (probably because the water trick has never done much for me) but thought it was an interesting idea for those that it does work for. -Ricardo

Comparison of Methysergide to LSD http://researchlsd.blogspot.com/2007/11/methysergide-is-closely-related-to-lsd.html One case report on Methysergide-induced heart disease http://circ.ahajournals.org/content/56/5/889.full.pdf -Ricardo

What I find really interesting is that you took fresh seeds, something that is hard to get if you are not growing them yourself in a warm climate...(MG's don't seed until the 2nd year, so if you are in an area where the winters get too cold for them you don't get seeds...) Also, do you have any idea what strain they were? What color were the flowers? I am a big fan of the MG seeds, for me they seemed just as good as the RC. If it were me and I found a good source of fresh MG seeds I don't think I would even bother with the RC! Glad to see you're figuring it out! -Ricardo

Seriously...I had no idea this was true. Makes me think of an overseas adventure for a clusterbuster adventure! Thanks Liberta's! People with your kind of info are truly needed on here. -Ricardo

Same here. I'm chronic, but the clusters are far worse starting at just about the last 2 weeks of August and going into September. For me this is definitely true. Every once in a while I get really successful bust that reduces my pain to light shadows for a week or so...But when this happens I get hit really hard when they finally surface again. I so wish this were the case. Hell, yesterday I had a 12 hour cluster that Ketamine made a bit better but not nearly enough. Eventually mushy's and MDMA busted it, but even that did not happen easily. (took a whole lotta caffeine, exercise, reefer and ketamine on top of the hallucinogens, but it finally got rid of it.) Imitrex probably would have gotten rid of it but for a whole bunch of reasons I try to take that stuff as little as possible... 3 hour clusters are pretty normal for me. I do get however, that for most people this is not the case. Just wanted to throw my experiences out there so the folks that also fall into this category don't feel so alone... -Ricardo

ah...now I get what you were saying Still always good to remind people that are getting video taped that it's not for a personal collection, but the internet.

I think a lot of people would disagree on that. Quite a few people got clued in to the idea that these drugs are alleviating Clusters for months at a time for some folks. I'm sure there is no real way to say for sure how many people watched that Nat. Geo. episode but I would bet that it got the term "cluster headache" into a hell of a lot of peoples heads that had never heard of it before. With them doing it in an entertaining video about hallucinogens makes it so that people actually pay attention. Unfortunately, not many people want to just sit around and listen to facts about horribly painful diseases. Probably just not the kinda thing you sit down and relax to. Make it a slick video like they did and add in the controversial "illegal drugs" aspect and I bet we got quite a few people interested. To me, this is one more aspect of how the hallucinogens can help raise awareness of clusters. It's interesting. People will sit and listen to me talk about crazy psychedelic drugs and the impact they have on the brain, especially clusters and migraines for hours....I start talking about verapamil, Vitamin D, or brain surgery and people don't want to listen much. Maybe it sucks that people are not interested for the sake off being interested and learning about people with our condition, but I'll take whatever works. As far as getting McGeeney talking about clusters and hallucinogens in a video, it is a completely different animal than the NG episode. This is a respected Boston University Neurologist who can talk about the science behind what is going on and the positive ways he has has seen it impact his patients lives. That's gotta be worth something. Hell, it'd be great to have just for us and our site--that'd be a nice easy thing to send to a Doc who is not on board with busting to get them a little more at ease with busting. -Ricardo

Right?!? Somebody get McGeeney on video talking about the benefits of hallucinogens for clusters! (probably want to make sure he knows it's gonna end up on the web though ) -Ricardo

My opinion--the last thing the government wants is any sort of attention at all being brought to the fact that their ridiculous drug war is keeping people's "most painful condition known to man" from going away. They have bigger fish to fry that won't make them look like total asshats. -Ricardo

There may be other ways around this. There are quite a few mescaline containing cactus's that are legally available to buy. http://compare.ebay.com/like/161095593732?var=lv&ltyp=AllFixedPriceItemTypes&var=sbar http://www.ebay.com/bhp/san-pedro-cactus Another one of those "Legal to own and have, illegal to eat" kinda things, much like our LSA containing seeds. -Ricardo

I completely wrote this off at first but maybe there is something to it.... http://www.ncbi.nlm.nih.gov/pubmed/15658944 Looks like there is a study on this that is currently looking for participants if anyone is interested. By what I read it sounds like you would have to give up busting for a while though... http://clinicaltrials.gov/show/NCT01792817 -Ricardo

uh oh....I think I might of opened up a can of worms... I probably never should have mentioned that virus thing. First, we don't really know that any of us (except Brew and that could be a complete coincidence) even have high TNF levels. If we could prove that THEN we would have to consider why...and MAYBE, like a big MAYBE it could be from a virus. Just my opinion, but if this ended up being true at all, I highly doubt anyone could catch cluster headache. If people could catch Cluster Headache it would be a lot more often and end up in clusters of the population, something I have never heard of at all. There is no evidence at this point of a virus component to cluster...If really there is some sort of association then my guess would be our genes give us cluster headache, then a virus bumps up your TNF and makes the cluster chronic. But this is all a theory, a very imaginative theory based on a lot of circumstantial evidence. I really do think there is an association between TNF and clusters, but I consider it just as likely that we have a nitric oxide pathway that is out of control (for completely different reasons than TNF) and that makes TNF higher than it should be. It could be that lowering TNF levels would have no effect at all on our clusters. Or maybe we don't even have high TNF levels. We won't know until we get some people tested. As for- I think Cluster Headache is not nearly as rare as docs have made it out to be, people just get misdiagnosed because Docs think it's rare and are more inclined to write it off as a migraine. This goes double for women. A woman goes into a doc's office with head pain and the doc thinks "hardly any woman ever get cluster headache, it's got to be migraine" I think that as we get more info out to Docs about the true nature of clusters we are going to find that it is not nearly as rare as we think. -Ricardo

A couple different views- http://www.womentowomen.com/healthynutrition/vitamindandtanningbeds.aspx http://www.doctoroz.com/blog/mehmet-oz-md/safe-tanning-beds-think-again http://www.ncbi.nlm.nih.gov/pubmed/15585781

No idea. I'm not even really sure I buy into the virus idea as it is. If there are Clusterheads who really do have high TNF related to their clusters I could see it just as likely that it comes from bad genes.

I agree with all of this (or I did until you posted that awesome info about the hypothalamus TNF connection--that's some really crazy info that I had never come across....Good Find! but one thing at a time ) The idea that I have had was that High TNF levels and cluster are completely separate things, but unfortunately (because essentially some people have bad genetic luck) some folks have both cluster headaches and high TNF levels, leading to Chronic CH. The info that you posted is making wonder if there may be more to it than that. Again-- GOOD FIND! I do not have time to really check out those links in depth right now, but I will. -Ricardo BTW- one other TNF thing I neglected to point out...High amounts of Vitamin D are also known to lower TNF levels. Batch's remedy may be doing different things than we have all hypothesized....I know I found a specific study showing that Vitamin D lowered TNF levels in humans, but NOT until you reached pretty high amounts, right around the dosage a lot of Clusterheads seem to get relief. I'll look for it. http://www.sciencedaily.com/releases/2012/02/120223103920.htm

I've been wanting to post on this for a while, thanks for spurring me on. I will throw out the research that I have done and ideas that I have come up with, later I will try and find some links. (today is too nice of a Saturday to spend inside on the computer ) First off, damn close to every cluster drug I have investigated lowers TNF levels. Seriously. The ones that work on clusters but have always seemed weird because they are blood pressure meds (verapamil) or mood stabilizers (lithum) to caffeine, to ketamine, to psychedelics, to Imitrex, they are ALL TNF inhibitors---enough so that there are pub med articles detailing these actions in these drugs. I found one article specifically stating that the researcher was thinking that Imitrex may be working by lowering TNF levels. I think that this is one more key in understanding clusters, but it is not a big huge breakthrough in Cluster science...The reason I say this is I think I found the relationship between TNF and clusters. High levels of TNF increase the Nitric Oxide pathway, a well known trigger for clusters. IF you have high TNF levels and are prone to cluster headaches you will end up with a cluster. Maybe this is what chronic CH is really all about. A person genetically predisposed to Clusters, who ends up having their TNF levels rise out of control and constantly increasing the Nitric Oxide pathway just ends up having the constant cluster that won't go away. My guess is that high TNF levels are not the only thing increasing this Nitric Oxide pathway, just one. And then it starts to make sense as to why so many people have so many different reactions to various meds. Verapamil works for some, but not all. Same with Lithium, Seems like the same with all sorts of drugs. The psychedelics seem to me (although we have no real studies showing this) to be the most all encompassing therapy. From the responses that people put on this board it makes me think they have a better success rate than just about everything else...But again, no hard data to prove that. My bet is that the psychedelics are giving a one-two punch (or maybe a 1,2,3,4,5 and 6 punch ) As in, I think there is more than one mode of action happening here. I think the TNF levels getting lowered helps a lot of people (This may in fact be why the Psilocybin is such a good abortive for me) but I also think the direct action on the 5ht2a serotonin receptor is doing some unknown action that is stopping many peoples clusters for months at a time. I would not be surprised if as we investigated more and more, we find that the psychedelics hit numerous buttons in the brain and body that are beneficial for cluster headache sufferers. As far as I think that the relationship between TNF inhibitors and cluster headaches has not really been investigated to say whether western Medicines TNF inhibitors would be any help. It could be that we need to get the RIGHT TNF inhibitors. As in, there may be TNF inhibitors that have side effects that actually end up negating the positive effects of TNF inhibition. A very loose example of this type of situation would be with the NMDA receptor antagonists, which have been helpful for many cluster suffers as these include Ketamine and Nitrous Oxide--but the class of NMDA receptor antagonists ALSO includes alcohol, which will never help your clusters because they stimulate that Nitric Oxide pathway a bit too much. All this info is great, but it leads me to the real question--IF high levels of TNF are a problem here, why do we have such high levels of TNF in the first place? Tumor Necrosis Factor does exactly what it sounds like, Necrotizes (eats away) tumors. In many cases it rises when a person has cancer, to fight off the tumor. (Don't get scared folks, we do NOT all have undiagnosed cancer) After some reading though, I found TNF levels also rise in response to viruses.  Could we be suffering from undiagnosed, and undetectable viruses? Correct me if I am wrong, but I think you can only test for a virus that you know about....And if I am also remembering right I think that a while back there was a cluster researcher that got laughed at pretty hard because he was saying he thought there may be a virus component to Cluster Headaches. All of this is complete theory, and I don't buy it all 100%...But it is interesting to say the least. I'm going to keep at this, especially when I bust. It seems like the times that the most important, significant ideas come to me when I am in that deep mushroom trance.... I feel like I am completely out of my body and in a sea of information that I dreamily catch and grab like plucking a ripe apple from a tree. Not sure if tonight is one of those nights, but soon... -RicardoÂ

Years ago I was having Grand Mal seizures that Western Medicine could do nothing for. When I felt one coming on I could take a xanax under my tongue real quick and put it off for an hour or 2, but it would just put it off--the seizure always happened eventually. Marijuana though, stopped the seizure in it's tracks and it would not come back. Every single time I tried. Glad those days are over, it is an unbelievable shame that we will give people some of the most addictive drugs known to man (that still don't work) but have problems with people taking in a non-toxic plant. -Ricardo