Ricardo

I think this is one of the few scenario's where I would recommend narcotics if you can handle them. They are known for giving people rebound headaches themselves, but in my experience the rebounds from narcotics did not seem to come as easily or as severely as the ones I would get from triptans. Might even be a good case for a week of prednisone. Both of these can cause rebounds and potentially could block a potential bust that you go for afterwords, but you would no longer be experiencing the rebounds from the triptans. Might be easier, might not. This is true, but I will say that the reason I really feel this way is that I have never heard of a case where a person got serotonin syndrome and they were not on SSRI's or some other long term serotonin boosting drug. Usually I would think that Relpax would not be included in this group of drugs, but it would not surprise me at all if daily Relpax for 10 years was giving you an SSRI like action. That being said, I was in a similar situation a few years back. I was not on daily Relpax for 10 years, probably closer to 2 years. I do not remember the specifics, but I do remember that busting just wasn't working at first. It would completely abort the headache, but towards the end of the trip I would always get a crushing cluster and eventually go for the triptans. Unfortunately I think the only thing that got me off it was DMT, but there has to be another way. Nitrous Oxide might help but it can be hard to get... I'll keep thinking, keep your head up...There's got to be a solution for you. -Ricardo

Wow dude, glad you came out relatively unscathed... Sounds like you fought one of the hardest fights the beast puts us through and came out alive...I'm really glad to see you are still here. Maybe have somebody else hold your gun for a bit? -Ricardo

I want them all, the BOL, the LSD, the DMT, the 5meo-dmt, the mexamine (an interesting one indeed), the ibogaine, the bufotenine....I've got a wish list that could go on and on. Truth is, I have serious doubts that there is a "magic bullet" out there. For me, mixing things up has always worked best for me. A little of this for a couple weeks, a little of that for a couple weeks seems to treat me right. I've heard quite a few busters say this. For me though, the shrooms win hands down. I seem to get a better bust from them, not to mention that the shrooms work as a kick ass abortive for me--LSD not so much. But what a chance that is...When you get to that point in life where everything is just really hard, say with the death of a loved one or other equally traumatic things that seem to come into everyone's life at one time or another...LSD is just not the answer.  BOL would be a godsend then. If that's not available then I think I would go for MDMA, as it has been shown out of all the psychedelics to be the one that can help you work through painful things without feeling so much pain...(check out MAPS work with PTSD and MDMA) One serious benefit of BOL that you can't get with LSD or other things that can make you trip--You can take it by the spoonful, you would think that would have the potential of some serious busting. -Ricardo

The idea seemed to be that we should section off a bit of our clusterbusters routine from the usual cluster headache remedies. This board was made essentially to make it easier for people to talk about a whole lot of legitimate therapy's that are illegal. Many people just don't want to go there (indeed, some folks don't even want to hear about it) One board is for psychedelic busting talk, one board is for traditional therapy's that you can get from a doctor or are not considered illegal. Obviously both boards get a little bit of each regardless. Both sites are (or were, at one point) considered "new". A new clusterbusting forum and a new ch.com forum. -Ricardo

I will update the Ketamine thread soon! As of right now mostly I am relying on Ketamine and Psilocybin to abort. Ketamine for the mild/moderate/almost severe clusters, and if it fits into the schedule Psilocybin to abort the heavy clusters. When it doesn't fit the schedule I go for Sumatriptan as a last resort. Boston Headache Doc is the one to go to for info...He can supply you with all the info you need to bring to your neuro. -Ricardo

Intranasal ketamine has damn near completely erased this scenario from my life. Highly recommended, you can bring it with you everywhere quite easily. -Ricardo

I tried it a couple years ago. Didn't help, but there are definitely people that have gotten good relief. My thoughts are that anyone with even slightly lowered T levels should try it, just to rule out the possibility...

I seriously dissociate to deal with the pain. I kinda just go somewhere else. Even when I am active and actually doing stuff, if I am getting hit I just kinda push the pain into some outside space where it does not effect me so much. Over the years I just kinda slid into this and it is a pretty effective coping mechanism, but it has it's down side. I feel like I can dissociate most of the pain, but once it's too much it's like opening a floodgate. It's kinda like "I'm all right, I'm all right, I'm all right...but eventually it goes to "I AM SERIOUSLY NOT FUGGING ALL RIGHT!" and there does not seem to be much in between. Seriously confuses people that around me sometimes. -Ricardo

This I wholeheartedly agree with. And for the record I don't think this guy is a quack. I think he is like a lot of people that find a cluster headache sufferer that gets relief and start thinking "I've found it! The cure for cluster headaches!" Maxilofacial surgeons get to this by doing what they do, dentists get to it by oral surgery. And I think it's all true. My real feeling is that "Cluster Headache" is being caused (or triggered) by a multitude of things, that's why sleep apnea can cause it in some people and not others. And on and on we can go with individual triggers that fit small parts of our population but not all. I am sure there is some sort of common denominator that we will figure out eventually but for now we reduce symptoms and try to control triggers. But all the research is important, regardless of whether I want to partake in it In my haste to put this whole idea down I skipped over some really important info. This guy says that in some cases Cluster Sufferers are suffering from a demyelinating condition where the Myelin sheath around nerves are wearing away. This is what is essentially happening to MS sufferers but on a much larger scale. Could cluster be an autoimmune disease like MS, but much more localized? I have heard the question about autoimmune posed before. But even if we can figure out that, I don't know how much help it would be, seeing as how MS is another condition that we don't really have many options for. Two experiences I will share, who knows if they have any bearing on our situation. I know a man that was completely bed ridden from MS. Eventually he started "bee sting therapy" (honey bee stings all over his entire back, sounded like it was a lot of stings) This got him out of bed and able to function from a wheel chair and get back to work. He stopped the therapy a few years back because the guy that was doing it for him died, but the help he got has lasted. A good friend of mine was diagnosed with Tardive Dyskenesia, a condition that involves involuntary jerks and abnormal facial movements. It is also a demyelinating condition, but this time caused by side effects of an antipsychotic drug. (warning to all that get the recommendation on our CH.com board to try out Zyprexa for your clusters--something not mentioned often is that it can give you this from one dose. Not likely, but it can.) After a little research it looked to me like lecithin supplements might help rebuild the myelin sheath (or at least slow down it's destruction). She took the supplements and her symptoms went away. Definitely could have been a coincidence. Lecithin is some seriously good stuff for you. You can get it from runny egg yolks (not cooked), sunflowers and soy--but don't get me started on just how poisonous I consider soy to be http://www.wisegeek.org/what-is-sunflower-lecithin.htm -Ricardo

I don't blame you for trying everything under the sun to get help for your son and I'm sorry for some of the generalizations I made. You are right, this is not brain surgery and the immediate (and I would suspect long term) risks are nowhere near the same. In my mind I still get hung up on that "minimally invasive" thing. To me, "minimally invasive" is still invasive. This guys criteria for who will get relief from his procedure is what throws me off the most in this case First off, I don't buy his idea on why migraine medication works. This whole theory has never held water, the link I put up earlier explains why. Second--the idea that if any triptan works you might get relief sounds so promising and so generalized I have serious trouble believing that he said that. What I do believe is that by saying that he gets a whole lot of people excited about the prospect of it working. That seems kinda ridiculous, but this has not been along for long enough to know. Maybe he's right and maybe 4 out of 5 will get relief out of it. We've already had one board member come out and say this procedure did not work for them, maybe they are just one of the few...but my guess would be that once this procedure has been around long enough that 4 or out 5 number is going to change dramatically. One thing that seems weird is that the only write up of the results of this procedure I can find is the one where they talk about the results of just 5 people. Has anyone been able to find any info on others? My main concerns (no offense to those who do not share these concerns) would be first off, that this Doc does not seem up to date with how Migraines or Clusters are happening. Maybe he is right, maybe our whole problem is a screwed up artery and a screwed up nerve...But from everything I have read on Clusters and Migraines I find this very hard to believe. Another major concern is that with this being started just 3 years ago, we really do not know what the major effects of screwing with this artery is going to do. I would be concerned about how changing this blood flow is going to affect me over the span of my entire life. Maybe you really can short circuit this artery and be completely fine, but I have my doubts. For me, I feel like I would need to see what happens to people over the span of at least 10 years...(even then it would still concern me about the effect on my later years). Maybe I am putting too much faith in the idea that 10 years from now psychedelic medicine will have a better option for us. I could be wrong and maybe all the surgeries have a real place for our treatment. The whole thing seems like just too much of a gamble for me. Sorry if I ruffled any feathers. Last thought--Your sons experiences with relief when pushing on the top of his mouth was interesting from a different angle for me. Just last week I had a craniosacral practitioner talking about the relief some people get by pushing on this spot. Her explanation had something to do with craniosacral pressure points or something. I will ask when I see her again. I'm not saying that your sons experience is not related to stopping some sort of blood flow, but there may be other things at work. -Ricardo

There are 3 major types of Psilocybin mushrooms--Cubensis, Cyanescens, and Azurescens. (In total there are definitely more than 3, but these three are the most common) The Cyanescens are about twice as strong, while the Azurescens are a good bit stronger than that, not remembering exactly how much though. I am a big fan of the Cyanescens, but have only taken the Azurescens once. (completely friggin nuts and one of my friends lost all ability to communicate at all, but we took quite a bit) I am up for the Cyanescens again, but I will not take the Azurescens again and I recommend the same to others. Truthfully the trip I had was great and I would have no qualms experiencing it again. The reason I would not take them is because of reports of "Azurescens paralysis" Seems like it happens to some people while they are on it, but others have it happen the next day, for hours where they have serious muscle paralysis and can not function. It also seems like this is not just coming from heroic or even just large doses. Some people have speculated that this is coming from either bacterial contamination from the wood substrate that they grow on or some sort of breakdown of that substrate into something bad. This wouldn't surprise me, because I have never heard of this happening from Cubensis, even at ridiculous levels, and there are a hell of a lot of people shrooming off Cubensis. I think we would have heard about this if it was an actual effect of Psilocybin. https://www.dmt-nexus.me/forum/default.aspx?g=posts&t=38626 -Ricardo

Not quite, the whole idea that vasoconstriction has been triggering clusters and migraines is an idea that has been debated for a long time and in my opinion proven wrong at this point. http://www.nzherald.co.nz/lifestyle/news/article.cfm?c_id=6&objectid=10878082 And this strikes to me the biggest reason that I will never let anyone slice into my head and start altering nerves and blood vessels. Over and over I have heard these surgeons tell us they know what's wrong and how to fix it, and ending up with marginal results and sky high risk rates. We do not know how or why clusters happen, why would we assume at this point that we can hack into someone's brain and fix what we really don't know is wrong? At times I also think that some of these doctors are taking advantage of us in the name of guinea piggage. We suffer from not only the most painful condition known to man but also very high rates of serious depression. So the question I pose is this----Can a very depressed person who is in constant pain give a answer that is not affected by this depression and pain when some guy says, "Hey, I could hack into your brain and maybe make you kinda better..."? We have had amazing results for cluster headache with psychedelics and non psychedelic medicine (Bol-148) and it seems like there is a large portion of the medical community who want to ignore it because they are either scared of legal repercussions or got a little brain washed by the anti drug agenda of the 80's. Our clusterbusting routine is in no way perfected. We know this because it seemed like Bol-148 got a little closer to perfection--a drug that worked on clusters for months at a time and hardly any side effects. From all I have read, it seems like we did not have to look hard or far to find this drug, we just had to look. I find it very hard to believe that there are not other drugs out there, or current psychedelics that can be tweaked out that will have the ability to do what we want even more effectively. More drugs, less scalpels....I think that might be a new saying of mine My apologies if I have hurt anyone's feelings with this post, we are all doing what we can to live with this beast. -Ricardo

It does I'm still always afraid that I'm going to set off a smoke alarm with my fresh scented ganja smoke though...

Effects of Psilocybin on neurogenesis, a talk by Zeno Sanchez-Ramos. A little dry but good info. One of the more interesting things found in this study was that Psilocybin was growing new brain cells, but not from one dose. Not until they gave 3 doses--One dose a week for 3 weeks did they find this as a result. This may point to better clusterbusting relief if taken on this schedule (or maybe not...) Even if it did not up the effectiveness of the mushrooms, I would bet money that it WOULD help fight off depression. I found this extra interesting because I take my mushrooms once a week, for three weeks, then take a week or two off. http://www.youtube.com/watch?v=QRNSEG1DY2s&feature=youtube_gdata_player -Ricardo

I agree completely. The thing that keeps coming into my mind though, is that lots and lots of hippies end up at music shows with tanks of medical grade nitrous. It can't be that hard to get, I am going to ask around. -Ricardo

Nitrous Oxide has completely saved me 3 times over the past couple months. Each time was when I was out and about and the Ketamine was just not working. Each time was a level 8 or 9 on the pain scale, about to puke and getting light headed and shaky. Each time I got home, ran into my house and grabbed my whipped cream nitrous dispenser, loaded it up and sucked the nitrous down. (This thing http://compare.ebay.com/like/310587804293?var=lv&ltyp=AllFixedPriceItemTypes&var=sbar) Not once have I had this thing actually abort a full hit, what it did do was bring my level 9 hit down to a 4 or 5 for a little while. This might not seem like much, but each time it gave me the chance to not panic, not go straight for the immediate relief of the Imitrex. Instead I was able to think about my options for a minute and gave me enough time to get mushrooms into me instead, each time making a succesful bust. As far as aborting a full hit, like I said it doesn't work with this. (trust me I have tried pretty hard ) At the dentist though, with a mask on at a high flow rate it has worked 100% at least 4 times now, and it was damn close to instant. Hardly anything has worked quicker. Definitely quicker than Imitrex. What I'm thinking now though, is "How hard would it be to get a hospital to carry a nitrous tank for clusters?" I have some people that I know who are higher ups at 2 different hospitals and I am going to push this idea on them. Additionaly I have found that there are at least 2 hospitals that still carry nitrous (for labor pains in pregnancy) most hospitals do not carry nitrous, but these 2 do and I am going to get in touch and see if I can convince them to let a cluster sufferer who comes in try it. Who knows.... -Ricardo

One of the best ideas that I stumbled on was how to smoke ganja in a hotel room without getting caught- Only pack enough in the bowl so there will be nothing left after one hit, otherwise there will be smoke rising up off the bowl. Then blow your hit into a large trash bag, tie it in a knot, and stick it in the corner until morning. Then it's just a bag of smelly air (that is not recognizable as ganja). I usually just walk out to the car with the trash bag and open it out there. I have had occasions where in one night I went through at least half a box of trash bags...

When I used to eat the ganja, my favorite was coconut milk. So easy and super tasty. A warm cup of ganja coconut tea really hits the spot When I was younger and had the local PD harassing the hell out of me this was a common problem. Some tricks I learned---after breaking up bud the oils stay on your fingers and won't come off with regular soap. Washing your hands with a little olive oil, then washing it off with soap works great. Another thing is how to get it off your breath--extremely hard (especially if you like the industrial sized bong hits like I do) seems like nothing gets it off my breath except those tea tree toothpicks. I read how another guy thought that the smell was sticking to his clothes, so he only smoked naked. A little extreme for me -Ricardo

I have heard other migraine patients say this. For me it is the exact opposite. I puff tuff but never go near the edibles--if I do I will most definitely get a heavy cluster. I am not familiar with what type of strains are good for migraines, do people tend to go more sedating (Indica) or more hallucinatory (Sativa) or just some sort of mix?

The idea for a long time has been that when you are having a cluster there is some part of your brain or head that is getting too much blood flow. The theory went on to guess that vasodilators will open up blood vessels, making more blood available to your brain and theoretically making the cluster worse. The theory also said that a vasoconstricter would lessen the amount of blood available to the area, making the cluster worse. This is old thinking that as as far as I can tell is completely wrong. http://www.nzherald.co.nz/lifestyle/news/article.cfm?c_id=6&objectid=10878082 As far as Marijuana, it has been one of the most helpful things I have ever come across for my clusters. Alone, it has helped me a few times, even aborting what I thought would be a pretty bad one. Most times though, the real help I get is in the combination of drugs. I do wonder if the blood vessel dilating effect could be one of the helpful things in this regard...I feel like at times my metabolization gets "stuck" I can take drugs and have them just not be very effective. Then I toke and it opens up the flood gates. I have had this happen with mushrooms, ketamine, coffee, opiates. I have had to watch out with the ketamine at times...There have definitely been times where I was at work taking Ketamine all day and not toking...get home, take a puff and the Ketamine floods over me. It is something I now know I have to watch out for. The coffee/marijuana combo (known affectionately as the "hippie speedball" by many a stoner) seems to be especially helpful. It can make a strong cup of coffee that gave me marginal success against a cluster 100% more effective. I have had quite a few times where I was just going through my coffee/cannabis routine to try and help the cluster, (but fulling planning on taking Imitrex) and finding I didn't need it.  Definitely makes the amount of Ketamine I need much much less (warning to the other ketamine users--it will also make you much more intoxicated) I have found the same with opiates. In fact, opiates are not that helpful for me UNLESS I smoke. I had one time in particular where I ended up in the ER getting shot up with Dilaudid. It made me not care so much, but the opiate hardly touched the real cluster. Then I went home and took one toke and got 100% relief that lasted. Here is a peer reviewed case study showing how one person who did not have relief from much of anything else, did get relief from both smoked cannabis and Dronabinal, a synthetic THC pill http://www.ncbi.nlm.nih.gov/pubmed/19220500 You know if there is one person that there has got to be more. As far as strains, I find the more hallucinatory Sativa strains to be much more helpful than the sedating Indica strains, but usually I go for a good mix that is predominately Sativa. Last thought--even if the chances are slim that it will work for you--besides oxygen is there really anything that comes close to the unbelievable non-toxic Cannabis? Try it! If it works you have something damn close to unheard of--a cluster med that is not toxic for you. -Ricardo

Right? It is always amazing how you can just be trying to explain why your eye looks like you got stung by a hornet or why you aren't going to go out boozing with people and people will try and trump you. Truth is, they don't understand, and they can't. Until I got hit with Clusters I couldn't understand either...These days I just shrug my shoulders and remind myself that IF they knew, they would most likely shut the hell up and have sympathy. But they don't and they can't, so oh well. Many people have things to bear that I will never understand... I had never heard of this book and it looks amazing. Leonard seems appropriate indeed. -Ricardo

The more I learn about and from Richard Evans Shultes the more I am impressed... http://wlbcenter.org/Schultes%20Publications/1973%20Sacred%20Narcotic%20plants%20foreword%203-5.pdf

Could not have said it better myself. Forget whose in more pain and give sympathy to anyone and everyone in pain. Pain is pain and hell is hell. Thanks for the Wisdom Moxie!

Quite a few. Most of my busts these days in-particular have been at least 5 days, sometimes going up to 2 weeks trex free. The busts that I had after waiting longer amounts of time did not seem much different in the long run. Biggest thing that seems to ruin a bust for me is if I take Trex 3 days in a row, even a half shot. One day or two and it doesn't surprise me if it still works. I've had so many times now where I thought it wasn't going to work but used the mushrooms as abortives and found a clear lasting busting effect that I just do them and don't worry about it. I really would not be surprised if the reason I have better luck with this is because I take such high dosages...

For a long time I struggled with detox times. O2 doesn't work at all for me so I found it really hard to go a full 5 days for a long time. Eventually I stopped torturing myself and if I had to take trex, I took trex. I have no idea how many busts I have done now where I took trex sometimes even less than 24 hours before busting and still had the bust effective. I would guess more than 20 at least... For me it seems like small amounts not that often do not stop an effective bust for me. I try like hell not to take it at all, and when I have to I take as little as possible, but when I do I just kinda shrug and say "oh well". Rarely do I actually change my busting schedule to get farther away from a time that I have done Trex. Large amounts or taking it too often DOES seem to interfere with the busting capabilities for me. Another factor in my situation is that I take larger amounts than most folks. I would not be surprised if large amounts could wash out any leftover Imitrex hanging around in your receptors...This could be a factor in Trex not stopping my busts. -Ricardo