Ricardo

I remember when I was on Gabapentin for seizures years ago and asking my Neuro about using Gaba instead...He told me gabapentin was named that because they initially thought it hit Gaba receptors, but eventually found that not to be true. Wikipedia says--"Gabapentin was initially synthesized to mimic the chemical structure of the neurotransmitter gamma-aminobutyric acid (GABA), but is not believed to act on the same brain receptors." And not to be a pessimist, but how do you tell the difference between gaba not working because of tolerance, and gaba just not working? I only say this because many people, (including myself) have come across numerous substances that we have THOUGHT worked, but have eventually find out that clusters being clusters, they come and go.

Every tidbit. He even frequents the board (Hi Doc ), so he hears all the crazy junk I say on here. He had quite the look on his face at my last appointment when he was reading my headache diary and said "nitrous oxide?" -Ricardo

I have found a weekly therapist appointment to be really helpful....I recommend it for anyone dealing with chronic pain. Then again, maybe I just like it because I finally found someone who I can pay to sit there and listen to me talk about drugs for an hour...

When I read "Therefore, the pathophysiology of cluster headache may relate to opioidergic dysfunction in circuitries generating the biologic clock." it makes me think that what they're saying is that there may be something intrinsically wrong with our opiod system in general, As opposed to the actual cluster disorder causing changes in our brain and opiate system. This would make sense with the fact that so many cluster sufferers get no relief from opiates....  I could be wrong, they don't give much detail in that abstract.

That's the thing that throws off my whole theory of TNF being implicated in clusters...I haven't found anyone who has gone on TNF inhibitors and reduced their clusters, while I have found the same thing you did CHF--people mentioning getting hit after starting the TNF inhibitors. I think this could mean a couple different things...either 1. Clusters and TNF have nothing to do with each other 2. TNF lowering drugs like Remicaide really suck for clusters....Kinda like how NMDA receptor antagonist seem to work well for clusters, but not ALL of them---Alcohol is an NMDA receptor antagonist, but it sure doesn't help for a cluster I'm sure there is a third, fourth and fifth option that I can't think of, and would love to hear anybody's ideas. I have to admit a lot of my excitement about this comes from all the non-cluster disorders that can be helped by this. My idea that TNF and clusters are connected are definitely just my theory that is quite rough around the edges. But there are numerous health problems that have been proven to get better when you lower high TNF levels, and according to all this research, taking hallucinogens should help...At one point as humans we ingested these types of substances at least a couple times a year, for the solstice....Sounds like a huge dose of anti-inflammatory, anti-depressant action for the masses and I wouldn't be surprised if a lot of western medicines autoimmune and inflammation problems would be greatly reduced if we picked up our old habits again....(Good Luck ) Another excitement aspect of it really has to do with getting Bol-148 on the market. My friend is all psyched because he thinks that Bol-148 is going to be able to help his Crohn's...And theoretically it should. Theoretically (I'm pretty sure on this, but not POSITIVE that Bol-148 hits the same serotonin receptor, the 5ht2a receptor--anybody have any info on that?) Bol-148 should be able to help Alzheimers, cancer, psoriasis, and a host of other inflammation and TNF related diseases....I remember someone talking about how much easier it would be to get this stuff on the market if we could prove it is beneficial with migraines--this would be ten fold that Brew- Have you ever noticed differences in the H.S. after busting? Do you know much about gettiing a TNF level test, is it just a simple blood test? It would be interesting (if your doc is on board) to see the differences in the TNF levels if you got a test done before and after busting (don't feel obligated to be our lab rat though ) Happy New Years Folks, I think it's gonna be a good one [smiley=evil.gif] [smiley=evil.gif] [smiley=evil.gif] Ricardo

The new year is kinda sucking for me...Lots of stress with the in-laws (mom, dad AND grandma) moving in for 2 weeks, my wife having surgery in 4 or 5 days and me with a 3 day long cluster that eases almost away for a few hours at a time (seems like I need a break from the ketamine, think I'm getting tolerance to it & the triptans are barely working) But at least I found a good article on clusters....seems pretty thorough and hits on some info I had not seen before. http://diss.kib.ki.se/2005/91-7140-363-9/thesis.pdf

I'm not sure we can really extrapolate that info to mean that the drugs are the cause of Gaba not working. I would also throw out the idea that the folks who are on heavy drugs are probably on heavier drugs for a reason--their clusters are a bit more out of control....

In reference to what Bonkers was saying in a previous post about explaining things in an easy to understand way....I should explain that I have no clue what this study means -Ricardo

No offense taken  I can completely understand how this is confusing, I've been pouring over this stuff for almost a week, looking at all sorts of articles trying to make heads and tails of all this info...And I might not always explain things that well when I'm whacked out on Ketamine The basics are this--There is a substance produced by the human body that has as a major effect inflammation, it's called Tumor Necrosis Factor, but let's just call it TNF. The amount of TNF in your body is greatly reduced when you activate very specific serotonin receptors (the 5ht2a receptors). These serotonin receptors are the same ones that get hit hard by all our clusterbusting drugs. So one result of taking hallucinogens is a lowered amount of TNF in your body, and it sounds like it can do this for a good length of time. In other words we have found a very inflammatory substance that goes away for months at a time when we take hallucinogens. No one has been able to say how the hallucinogens have been able to keep peoples clusters away for months at a time, and I theorize that this is the reason. At this point this is all theory, and I don't know how this is going to help us deal with our clusters today...but I find it fascinating (if you can't tell ) The only research question that this is bringing up for me, and I would love anyone's input on is---"What factors in the human body cause a rise in TNF levels?" -Ricardo

Redbull anyone? It'll suppress your TNF alpha production..... http://www.ncbi.nlm.nih.gov/pubmed/15313438

And here's a publication explaining how Tumor Necrosis Factor potentiates glutamate excitotoxicity....Which hints at ideas of why drugs that are NMDA receptor antagonists (drugs like Ketamine that block glutamate excitotoxicity) would work for clusters....For whatever reason (which I am determined to figure out ) I think our TNF is out of control, which is boosting brain glutamate levels to toxic levels, causing our clusters. And all the people around me are thinking I've completely lost my shit because I won't stop talking about Tumor Necrosis Factor, 5ht2a receptors, glutamate and awesome drugs that will save all of western medicine from our myriad of inflammation woes....At least I know you guys are listening! http://www.ncbi.nlm.nih.gov/pubmed/20849956 -Ricardo the TNF talking, 5ht2a receptor freak ;D

While sorting through my bookmarks I found this...I love all the random cluster info that seems to come to me when I'm busting (and then forget about till weeks or months later when I look through what I've bookmarked....) Opioidergic changes in the pineal gland and hypothalamus in cluster headache Using PET with the opioidergic ligand [11C]diprenorphine, the authors demonstrate decreased tracer binding in the pineal gland of cluster headache patients vs healthy volunteers. Opioid receptor availability in the hypothalamus and cingulate cortex depended on the duration of the headache disorder. Therefore, the pathophysiology of cluster headache may relate to opioidergic dysfunction in circuitries generating the biologic clock. http://www.neurology.org/content/66/7/1108.abstract?ck=nck -Ricardo

It's midnight...I busted a cluster with a decent amount of Ketamine and I'm a little whacked out...I've been planning on posting soon, But I keep itching to share my recent research...This seems like all encompassing information for the masses...The kinda info that can help so many people, cluster suffers and millions of others...The kind of info that shows just a touch of the promises of our magic medicine, but in a way that western medicine has difficulty dismissing...  Maybe I'm getting ahead of myself.... I guess it all started with me talking to a friend the other day...and he starts telling me about the experiences that a guy I know has been having battling Crohn's disease. He told me he has been taking injections of a nasty drug that he does not like (Remicade), but lately has been taking LSD instead.  LSD for Crohn's?  I was amazed---I tell all sorts of people to take all sorts of stuff but I can't imagine myself recommending hallucinogens for a disease like Crohn's..... Tumor Necrosis Factor (TNF) was not a term I had ever heard before, but once I started looking into Crohn's and LSD it kept popping up... From Wikipedia: The primary role of TNF is in the regulation of immune cells. TNF, being an endogenous pyrogen, is able to induce fever, to induce apoptotic cell death, to induce sepsis (through IL1 & IL6 production), to induce cachexia, induce inflammation, and to inhibit tumorigenesis and viral replication. Dysregulation of TNF production has been implicated in a variety of human diseases, including Alzheimer's disease,[1] cancer,[2] major depression,[3] and inflammatory bowel disease (IBD). The more I read about it, the more I hear the words inflammation repeated over and over...(not to mention nitric oxide synthase activity)  And the more I read I keep getting all giddy. I'm such a brain geek. But this research is awesome. This awesome study came to the conclusion that "DOI (http://en.wikipedia.org/wiki/2,5-Dimethoxy-4-iodoamphetamine) Superpotently Inhibits TNF-[ch945]-Induced Expression of Proinflammatory Genes ICAM-1, VCAM-1, and IL-6 in Primary RASM Cells http://jpet.aspetjournals.org/content/327/2/316.long This study confirms what I've been reading over and over, that drugs that stimulate or are "agonists" of the 5ht2a receptor do a really awesome job of knocking down the amount of TNF in your body for periods of time that are much longer than the amount of time that the drugs are in your body. (notice how it says "superpotently inhibits" not just "potently inhibits"....) All of our favorite clusterbuster drugs activate the 5ht2a receptor. I keep finding more articles to read...I've got a bunch on my list and I'll post them once I've gotten a chance to really read them (ketamine is not the best drug to help info soak in ) For now 2 things stick out to me: -everything I've read makes me believe this is implicated in our clusters -The number of diseases that could be getting months of relief from one dose of LSD is completely ridiculous.... -Ricardo

I think the only way I'll know that I'm through the constant series of CH's is when I find my time machine and go back 20 years....Hope you've got better luck

Taking melatonin with Gaba is fine as long as you're not going for super human amounts. I've been taking a supplement called Gaba Ease that combines melatonin, gaba, valerian, skullcap, theanine, and hops for a few years now...Never noticed much difference in the clusters (although I'm usually only taking 1500 mg in a night), but it helps if I've had too much caffeine or as a mild sleep inducer.

My 2 cents....I think the lemon juice and the second boil are not necessary. In the case of the second boil, I would think the only thing you are going to get is more shroom flavor and unneeded not-psilocybin stuff. Psilocybin is luckily very soluble in water, so not much is needed to get out all the goodies. My personal recipe is to crush up the mushy's as good as possible, put them in my french press with some peppermint tea (to prevent any gas the shrooms might cause), boil water and pour over them. I let them steep for 10 minutes and then strain it, cool it, and chug it down.

The 2 places I have had good luck with are: http://www.ktbotanicals.com/viable-seeds-c-2.html?zenid=c4m6650jh1ckc01kapbfmjo516Â (These guys are awesome, and have just about everything!) http://flowingvisions.ecrater.com (always gotten good, potent seeds)

This is something that has definitely not been lost on me....Just yesterday when I was talking to my therapist he expressed amazement that I wasn't completely depressed all the time. Even said, "you're one of the least depressed people I know--but you get hit everyday, you're on drugs constantly, you have this specter of beast hovering over you and threatening every aspect of a normal life...." Most definitely, these psychedelics seem to get more to the root of the problem then traditional drugs, fixing our brain even just a little to put pressure on the beast to go the fug away...But I think the potent anti-depressant activity (which I think works by what we think of western medicine anti-depressant activity and a whole lot more) can really turn the tide from living in hell to living with CH, and making it OK. At one point I thought I was almost disabled. Now I can work, live my life, take care of all the things I need to (sometimes a bit slower than I want, but hey....) In essence, I love my life instead of fighting my life. Even lately, I've been getting hit pretty hard every day...but I shrug my shoulders, get done what I can, bust what I can, and remember to be thankful for the amazing light the universe sends me. Now I think I'll go put on some Dead and hug a tree -Ricardo

I have experienced both, at different times. There are times where I can not sit still, and there are times when I curl up into a ball and whimper like a puppy (Although if it gets bad enough I usually end up thrashing around a bit eventually) I encourage you to give your Doc all your symptoms just like they happen, I know you want the O2, but it's also very important that you get a correct diagnosis AND it's very important that you educate your doctor on the varieties of symptoms that can accompany CH. I've heard people on here trying to tell people that they don't have clusters because their headaches last too long, or because they don't thrash around enough when getting hit...But I hope people can remember that we still really don't know what's going on with this disorder, and it seems like the supposedly extremely rare disorder of cluster headache is becoming more and more prevalent--Not because more people are actually getting them, but because more doctors are admitting that clusters may have more faces than the typical wake you up in the middle of the night for an hour thing. Just for the record--my clusters (that have been recently diagnosed as clusters by a Neurologist who has passed the only certification program in the country for headache disorders) can last ALL day (and night if I don't do anything about them), I do not always thrash around, I rarely get hit in the middle of the night, and O2 does not work for me. Good luck on getting the O2, I bet it will happen. (and if it doesn't, we are all here to throw out all sorts of colorful insults to share with your doc ) -Ricardo

It actually worked really well for me. Once. When I was 17. After that it's been a definite no, kinda distracting, but always comes back, sometimes worse. Some people find going for a run or exercising intensely to help too, I wouldn't be surprised if the exercise, increased O2, and rush of brain chemicals all work together...(for some people) Interestingly, there is evidence that oxytocin supplements can help with chronic daily headache and migraines, never heard of any tests with clusters.... http://www.hugthemonkey.com/2007/04/oxytocin_for_he.html

I've always thought that the "lacrimination" or eye watering effect of the mushrooms was amazing in that both the cluster and the cure cause it....When I take my mushy's it's always just one eye watering, always the same one that waters from the cluster....

That sounds like an opportunity to good to pass up! Thanks for throwing that out there Larry....I bet a person who is in the industry AND actually suffers from our beast could really help to open a doctors eyes up. Thanks from all of us. -Ricardo

Man it's been a rough week....I have not actually counted how many zomig I have taken this week, probably should...it's been a lot. Same experience I've had in the past. I take an occasional zomig (or other triptan) and it's no big deal. I take more than 3-4 in a week, and it seems like it just spirals me into more and more pain, with brief intervals of PF time when I take the pills. Eventually though, it always ends the same. Triptans every day, headache every day--I mostly fight through the day, hoping that THIS day I might not actually need them--but until I bust it with something else (opiates have had the best luck with this for me--psychedelics get rid of my pain but it always comes back with a raging appetite for triptans...The Ketamine may work too, have not had enough experience with it yet....) I saw my Neuro on Wednesday and he wrote me a script for twice the dosage of Ketamine I was using. I was so unbelievably grateful, I had already been on the triptans for a week and could feel the spiral coming. Unfortunately, because it's not prescribed much, especially in Intranasal form, I have to get it compounded--can't just pick it up at the pharmacy. BUT.....They don't have it. They are working real hard to get it, but right now they don't and I am stuck in the zomig spiral. I was up til 5:30 this morning, ice pack to the head. Zomig helped but not nearly enough and I maxed out my 24 dosage limit. I didn't get out of bed until 12:30 in the afternoon today. I had shit to do. Now I just called the compounding office. They promised last week they would have it by now, but of course, no ketamine. Not sure when they will get it either, real soon though (I think I remember them saying that on Thursday.....) They told me they will call me as soon as they get it.... So.....What now? No headache right now....maybe today will be pain free? (yeah right says the zomig spiral....) I think I'm gonna call my neuro and see if he'll give me a couple days worth of opiates so I don't have to eat any more of those dirty Zomig.  (or more realistically end up in the ER because the triptans that I seem to have become addicted to don't even really seem to WORK anymore) Don't worry about me though, folks....Just venting. If this is as bad as it gets, it's nothing like all the BS I dealt with before. I'm gonna try and get in touch with my Neuro and see what he can do.... -Ricardo

This is such an amazing video...Had to share. Neuroanatomist Jill Bolte Taylor describes her account of living through a stroke and finding nirvana....

Thanks! I think 34 is gonna be a good year!