Hi,

I've gotten the impression lately that the majority of this site's members would prefer that any discussion of the use of psychedelics in the treatment of CH be restricted to the sister site, clusterbusters.com. Rather than engage questioners in discussion about psychedelics, those of us who champion their use should instead direct them to the clusterbuster site and not discuss them here. Is my impression correct?

Ron

Please point me to where you read something that would give you reason to think this. 

I'm not trying to be flippant, just that I haven't read anything like that myself.

DJ has always allowed and even encouraged open discussion here about these alternative treatments. 

IM is good.

      Potter

Several board members have posted rather "pointed" responses to people who have attempted to discuss any of the "alternative" treatments on this board. There is no such restriction that I as a member, or a moderator, have been made aware of.

That being said, if I start advertising a business on this board to grow and sell illegal mushrooms, there are going to be issues. If I in general terms explain that mushrooms possess a compound capable of halting cycles completely, and encourage them to view the studies posted on clusterbusters.com     I don't see a problem.

Joe

Okay. Maybe I was a little hasty. Even paranoid... but... just the same.

Redd, my impressions were formed after reading the thread "Lots of questions" in "Medications, Treatments, Therapies." It seemed that no one was willing to provide Kim D with any information other than directing her to the ClusterBuster website. Joe, no offense, but you told her that "You'll really need to register on the clusterbusters site. For a number of reasons, we don't deal with that subject outside of the referrals we give." Potter, I don't know what "IM" refers to. Marc, I am now and will forever be grateful for the support given me by the members of this website. Had I not found it, my son might well be dead. I love you guys; you're family. I don't mean to be critical. I just don't want to step on anybody's toes by posting unwanted comments. I thought perhaps some unwritten rules had been changed that I hadn't been made aware of.

Ron

bonkers wrote on Oct 26^th, 2010 at 8:47pm:

Okay. Maybe I was a little hasty. Even paranoid... but... just the same. Redd, my impressions were formed after reading the thread "Lots of questions" in "Medications, Treatments, Therapies." It seemed that no one was willing to provide Kim D with any information other than directing her to the ClusterBuster website. Joe, no offense, but you told her that "You'll really need to register on the clusterbusters site. For a number of reasons, we don't deal with that subject outside of the referrals we give." Potter, I don't know what "IM" refers to. Marc, I am now and will forever be grateful for the support given me by the members of this website. Had I not found it, my son might well be dead. I love you guys; you're family. I don't mean to be critical. I just don't want to step on anybody's toes by posting unwanted comments. I thought perhaps some unwritten rules had been changed that I hadn't been made aware of. Ron

Instant Message.

     Potter

Ron,

I'm one who has referred people to clusterbusters primarily because I have no firsthand experience with them and can't advise properly.  I am NOT against their use, and if my circumstances were to change I would be right in there. 

I also know that some who bust are also very cognizant of issues if it were known that they do.  They can be very careful about recommendations as to procedures, etc., or even saying to try them.  They may have livelyhoods that can be effected.  I posted to Kim in support of a couple of them. 

Please don't get the idea that alternatives should never be discussed here.  Personally, although I cannot use them, I would never tell another not to, nor would I do anything to discourage it. I've seen first-hand the good that they do.

Jerry

A usual I didn't make myself clear! ;) I suggested she register at clusterbusters, in the hope one of the many well versed people there would take her by the hand and give her a better run down then I could with my very limited knowledge.

Joe

Damn! Looks like I jumped the gun (as usual). I misinterpreted a few comments and shoved my foot directly into my open mouth (again, as usual). I apologize to anyone I may have offended. I'll try to be more cautious and next time I'll look a little more closely before I leap.

Ron

I personally choose not to share anything that could come back to bite me or my career. I have people who depend on me.

Maybe I'm a little more adventurous (foolhardy?) now that I'm retired. But I feel it's critical that this information be disseminated as widely as possible, as quickly as possible. These substances flat out work against cluster headaches. For most sufferers, not only their current HA but their future HAs are eliminated. NOTHING works that well. Nothing's even close. Maybe I'm too open, too enthusiastic in championing these drugs, but if we don't speak out and let everybody we can know about this, nothing's gonna happen. These drugs will stay illegal and those who choose to break the law and use them anyway, because nothing else works anywhere near as well, will continue to be criminals. No research will be conducted and these magic substances will stay in the shadows. I personally don't intend to stop until these drugs are readily available, with a prescription, to every clusterhead in the world.

Well, I think it is good to air this out so we all understand each other.  Over the last couple of years I have come to believe that both websites are essential for us clusterheads.  This site seems to get a lot of the brand new people or the people who have suffered for a long time and finally found a support group. 

I definitely think it is important for the newbies to learn that the psychoactive medicines exist if they want to use them. 

For the real details of their use, the busters website is more detailed.  I would send people there to get a 'how-to' tutorial to use the medicine effectively.  And to meet a bunch of great folks (just like here), in fact many of us overlap. 

**opinion alert**  It is my opinion, in the end we will all get away from the harsh pharmaceuticals and get onto something more like the Bromo-LSD when it gets FDA approved.  From my psilocybe experiences and the stories of the Bromo researchers it just sounds like a better solution to the cluster pain than anything else. (opinion over, please throw your ripe tomatoes now).  :D
Anywho, keep up the good work everyone! ;)

--The Shaggy :)

Quote:

psychoactive medicines

correction.psychoactive drugs.

if the purpose is a research to be done on this don't upgrade them just yet.There is a major difference between drug and medicine.The second has been tested over and over while the first has come directly from nature if it's not chemical.
Moreover i don't really understand how a pressure for others to use them can lead to a research(could someone explain the..plan?!).
And bonkers it is pressure cause you just didn't even bother to ask kim what treatments has already done and what not, as there are chronic who are resistant to treatments and episodics who might get relief from the same as it seems that there are major differences between clusterheads(medical literature)

Finally at the other topic here -75% stand up- i only see updates of how succesful it is and pf makes while i ve never read anything here not even for a slight side effect while on clusterbusters has been mentioned(trip).

two articles for whoever wants to read.
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Quote:

Psilocin mainly interacts with 5-HT1A, 5-HT2A and 5-HT2C receptor subtypes: it is a mixed receptor agonist. In contrast to LSD, psilocin does not have an effect on the dopamine receptor. Tryptamines and phenethylamine hallucinogens both have a relatively high affinity for serotonin 5-HT2 receptors, but they differ in their affinity for other subtypes of serotonin receptors. The correlation between the relative affinity of hallucinogens for 5-HT2-receptors and their potency as hallucinogens in human beings suggest that an important component of the mechanism of action of these substances is through stimulation of brain 5-HT2-receptors. A primary role for the 5-HT2-receptor in the mechanism of hallucinations is further suggested by the observation that antagonists of the 5-HT2-receptor are effective in blocking the behavioural and electrophysiological effects of hallucinogenic drugs in animals and in man. Although 5HT2-receptors are certainly involved, at present, it is not possible to attribute the psychedelic effects to any single 5-HT receptor subtype. Behavioural effects are dependent on dose and the individual reaction and sensitivity to psilocybin, previous experiences and the setting. The major effects are related to the central nervous system, but there are also some sympathomimetic effects. The subjective effects, however, may vary greatly between individuals and from one episode of use to the next within the same person. The effects range from mild feelings of relaxation, giddiness, euphoria, visual enhancement (seeing colours brighter), visual disturbances (moving surfaces, waves), to delusions, altered perception of real events, images and faces, or real hallucinations. The sensory distortions may be coupled with restlessness, incoordination, feelings of anxiety, impaired judgement of time or distance, sense of unreality or even depersonalisation. These effects may be termed 'bad trips' by users and can also involve panic reactions and psychosis-like states. In general, the physiological effects are not significant, but may include dizziness, nausea, weakness, muscle aching, shivering, abdominal pain, dilation of pupils (mydriasis), mild-to-moderate increase in heart rate (tachycardia) and breathing (tachypnea) and elevation of blood pressure. Generally, body temperature remains normal. However, pronounced physical symptoms such as severe stomach pain, persistent vomiting, diarrhoea etc. have been recorded

ever question why are illegal?

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Quote:

These substances flat out work against cluster headaches.

Only if you do it correctly, a skill I have yet to master! ;)

Ron, I think it's a good question and one you needn't apologize for. I didn't think you were aggressive or offensive in any way. I, for one, am grateful for you and others who helped me see an alternative approach. Just wondering, though. Why and when was clusterbusters put up as a site? I get its mission, and I applaud it, but there must have been at least a felt need that a dedicated site was more appropriate than occasional mention on a site such as this one. lance

It seems that, by default or otherwise, both sites serve different and in themselves highly relevant purposes.

Across both platforms we should advocate sufferers' education in alts, ultimately allowing them to make an informed decision whether to use them or not.

Notwithstanding, it strikes me as sensible to maintain one forum more focused on the more conventional treatments, which should be the first port of call for newcomers, often confused about their condition and its treatment.

I am living proof that alts can be the treatment of choice, but that doesnt mean that they are or necessarily should be for someone who has a 3-week cycles every couple of years and who effectively deals with them with Verapamil and red bull.

Additionally, the entire topic of alts navigates a very narrow path and one in which tolerances on many levels are minimal. Consequently, a public forum that serves a large number of newcomers may not be the best place for the subject (does not mean we deny its existence).

In my opinion there is nothing wrong with moving to level 2 only after having completed level 1.

bonkers wrote on Oct 26^th, 2010 at 7:10pm:

I've gotten the impression lately that ... Is my impression correct?

Ron,

I was wondering if a change to a different thread title would be considered as more of a question, such as, "psychedelics ok?" in order to reflect the views posted here as well as your own,


bonkers wrote on Oct 26^th, 2010 at 11:39pm:

I feel it's critical that this information be disseminated as widely as possible, as quickly as possible. These substances flat out work against cluster headaches. For most sufferers, not only their current HA but their future HAs are eliminated.

instead of any negative impression of consensus.   


:)

Oxygen and energy drinks are the only things CH'ers use that are less innocuous than psychedelics when those psychedelics are used at recommended dosage levels. Most sufferers only need a fraction of what recreational users take to bust their HAs - sub-hallucinogenic or less than what is required to produce hallucinations is what is typically taken.

Black, where do you read of anyone applying pressure on others to take these substances? All I read is of the enthusiasm of those who have successfully used psychedelics to treat their CH. Who wouldn't want to spread the word if they had suffered for many years with this scourge and finally found something that made them instantly disappear - with NO side effects?

I don't mean to suggest that psychedelics be the first-line option for anyone diagnosed with CH. I do feel that ALL sufferers and ALL members of the medical community who treat them should be made aware of their existence and given the option, as informed adults, of using them as adjuncts to their treatment, if they so choose, without fear of legal repercussions.

I will save space by not retyping it....but Neuropath's response is spot on...in my humble opinion!!! (go back 2 posts) :)

Joe

I agree, Joe, that neuropath's response is spot on. (Your wife pointed it out to you though, huh?).

Neuropath, I'm sorry but I don't understand your sentence: "Additionally, the entire topic of alts navigates a very narrow path and one in which tolerances on many levels are minimal."

Ron

Additionally, the entire topic of alts navigates a very narrow path and one in which tolerances on many levels are minimal

Oh I can take a stab at that answer  for you Bonkers!

Abortion
Racism
The designated hitter
Medical marijuana
Medical use of mushrooms!

I dare say starting a conversation on ANY of those topics risks starting a sh%$storm that will leave the initial good intentions of the topic left in the dust!!! ;)

Just Joe's educated guess as to what he meant

I believe you're right, Joe; I was thinking of drug tolerances. You're for sure right about initial good intentions being left in the dust. Along that line, I'd like to apologize for starting this topic. It's taken up far too much of all you folk's good time (mine too), hasn't accomplished anything and hasn't helped anyone. I think helping others is what this site's all about and when we're not doing that we're wasting our time.

I'm going to continue advocating for the use of psychedelic drugs in the treatment of CH on the "Time for the 75-80% to stand up... " topic until I'm asked to stop but will refrain from doing so and will confine my comments to traditional (legal) treatments on the others. I'll not make any more comments here on this topic and I urge others to do the same. I hope I didn't offend anyone.

Ron

Ron,

I think you're missing the point. There are INDIVIDUALS, like myself, who cannot or will not comment specifically for reasons of personal risk. If you feel as though your commenting on the topic does not put you at risk, have at it, man. I encourage you to do so ON WHATEVER THREAD YOU THINK IS APPROPRIATE.

I can't. I know you understand.

Edited to add: I'll even go one step further and say that folks in my shoes depend on guys like you to get the word out. God bless you for doing so.

black wrote on Oct 27^th, 2010 at 7:09am:

[quote]psychoactive medicines. There is a major difference between drug and medicine.

Wow, quite active today everyone.  I use the word "medicine" more as the traditional use, not the modern pharmaceutical style.  Since the psilocybes are a traditional medicine I believe it fits.  Lots of things can be "good medicine" that you wouldn't get at the pharmacy.  The words tend to interchange a lot.  Don't know if that was what you were getting at??

--Shaggy :)

Quote:

"psychoactive medicines"

"correction.psychoactive drugs.

if the purpose is a research to be done on this don't upgrade them just yet.There is a major difference between drug and medicine.The second has been tested over and over while the first has come directly from nature if it's not chemical."
---------------------------------------------------------------------------
The first (nature) are the chemicals where all medicinal drugs are derived from.
The second (manufactured drugs) is an attempt to synthesize nature and put a price on it.
Both are good to an extent but in the process sometimes a superiority lies in nature. As may be the case with tryptans vs tryptamines

"ORTHODOX MEDICINE which sees mind and body as separate entities, is based on Pasteur’s ‘germ theory’ which has resulted in the multi-billion $ pharmaceutical industry which funds, educates and controls modern medicine.
(In short, we are the random victims of external microbes and are dependent upon healing via external intervention (drugs, invasive techniques, surgery, etc.)

ALTERNATIVE MEDICINE describes treatments which are not orthodox (mainstream medicine) - treatments which are an alternative to orthodox. In general, therapies are based on Bechamp’s ‘polymorphism and terrain theory’ which acknowledges and works with the body’s own in-built healing mechanisms.
(In short, we are responsible [please note - not the same as to blame] for our state of health which determines whether we are vulnerable to states which are defensive in nature but labelled inflammatory, infective or degenerative - a cause and effect relationship.)"

Basically ClusterBusters attempts to address the cause while traditional drugs attempt to address the symptoms.

CB "medicines" were once all the rage of the medical communities before silly trippy people helped big pharma and our side funded politicians to get them sent away through misinformation campaigns.
Pre 1970s research showed extreme potential for benefits in many ways. That research is renewed and back again.

I am a strong believer in the clusterbuster medicines and I live the results of being pain free after 34 years not.
I hope these discussions continue allways here, there and everywhere in an open and unbiased or biased way. Just as long as there is a discussion.

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Quote:

Basically ClusterBusters attempts to address the cause while traditional drugs attempt to address the symptoms

i can hardly understand what this means.Doesn't busting every few days attempts to to adress the symptoms?what's the difference?

as for the article


Quote:

the responsibility for your own health is yours, whether you take that responsibility or not

i beg to differ.especially in this part.
i wouldn't like to ever to go for a heart operation for example with a ''traditional doc'' who would say me such thing.
So i ll stick better with the hippocratic oath they give
and rights & obligations in the relationship of doc/patient.
Also i never saw any alternative health practicioner
send anyone for MRI and what technology provides nowdays so the whole thing is a bit ackward as the alternative don't separate mind and body and believes in Bechamp’s ‘polymorphism and terrain theory’ which acknowledges and works with the body’s own in-built healing mechanisms but i can see how this falls like paper tower in case for example of a tumor.
human nature is artificial but nature in a wider sense out of us itself proceeds and both a health and a sick person are considered physical by her.Nature is indiferrent
a case of gagraina and alternative medicine is a joke.

Also the knowledge of triptamines comes from traditional medicine as it seems necessary to separate mind and body to have this wonderful board.
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How else can we talk about neurotrasmitters and hippothalamus etc which technology brings in the surface with such a narrow thing as Bechamp’s ‘polymorphism and terrain theory’?


i am not denying that in my mind medicine is one and whatever helps without doing other bad at the same is good.I also don't deny that the succesful stories here from bustin have made me wonder about the nature of what i suffer,ch.

But at the end the question remains


Quote:

but if we don't speak out and let everybody we can know about this, nothing's gonna happen. These drugs will stay illegal and those who choose to break the law and use them anyway, because nothing else works anywhere near as well, will continue to be criminals

&


Quote:

I don't mean to suggest that psychedelics be the first-line option for anyone diagnosed with CH. I do feel that ALL sufferers and ALL members of the medical community who treat them should be made aware of their existence and given the option, as informed adults, of using them as adjuncts to their treatment, if they so choose, without fear of legal repercussions.

what's the plan?
if by breaking the law using them(and i am giving a two way meaning here.Problems with the law-two years for possesion or use easily here- and second possible problems-my fear- with health by using them which law tries to prevent.) i ll still continue to be criminal and add another one in the list.that's the idea?
the more we become the better?
we all have to become pioneers(with anything good and bad this includes) with the hope someone sees/hear us and cares to research for a med legal and without any side effects ad by that time we ll sit here and have ridiculous conversations about which medicine is better the orthodox or the alternative?

Don't get me wrong i am not fighting anyone here except the reason and in a way everyone here makes sense about his thoughts,fears and hopes(sometimes reading behind the words) but still this isn't enough.

I don't even understand how the world really acts with so many different studies i ve read about ch reasons and so many different half outcomes and yet i don't understand at all how if busting could lead to a reasearch(?)

isn't any other way to try move things?
a petition maybe with signs for research(i would gladly sign it especially since i am not using them easily  but send it where?) as this pain is too much and something better must be done according to our own demands?

otherwise we ll be here chatting why anyone didn't recommend alternative and if it's good to hold this side for traditional and the other for alternative??!

hope these make some sense.

p.s.i do believe too discussion is good anyway so let's keep it any time.

Black,

Petitions, requests, etc for research have been made.  The issue is though that psychoactive drugs have been ruled "medically useless" by the government without doing a full study of them.  Therefore, requests for further study are categorically denied because there is no documentation of any effective medical use.  What the folks at Clusterbusters are doing is providing their own research anecdotally (and they are doing a great job of it!) in order to establish a baseline that will validate further study.  That is how the Bromo-LSD trial came about.  The effectiveness of psychoactive agents is shown, but the cost of doing full scale trials so far has been out of our reach.  Pharmacological companies have shown no interest in a remedy they cannot patent.  I can understand why, although I would like to see them be a bit more altruistic.  The cost of doing full scale studies that will pass FDA muster AFTER they have gotten enough anecdotal evidence from those willing to go outside the law for relief is staggering.  Without a patent on the ensuing drug they will never recoup their investment.

I've seen with my own eyes the difference in the lives of good friends who have been able to take advantage of psychoactive agents.  I would be one of them if I were in a slightly different circumstance.  Frankly, I envy them.

Jerry

Quote:

The issue is though that psychoactive drugs have been ruled "medically useless" by the government without doing a full study of them.  Therefore, requests for further study are categorically denied because there is no documentation of any effective medical use

By saying further study you mean there is a half official study already  which suggests that there is no effective medical use?
Also i don't realize how you say clusterbusters are doing a great job  providing their own research anecdotally in order to establish a baseline that will validate further study..Isn't necessary an objective well around accepted co-ordinator to gather information under a standard accepted procedure of study?
who is that co-ordinator?
how could anecdotal evidence convince anybody?

Quote:

who is that co-ordinator?

The name that keeps popping up in one study after another is Dr. John Halpern.

brew provide some links pls if possible

Is your googler broken?

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Quote:

Also i don't realize how you say clusterbusters are doing a great job  providing their own research anecdotally in order to establish a baseline that will validate further study..Isn't necessary an objective well around accepted co-ordinator to gather information under a standard accepted procedure of study?

Why don't you ask them?

Here is another link for you....

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it's like googling a watch while i am asking for current time.

note to myself>rephrase questions better.some people answer only literally.

so let me google


-which study after study after study

oh well i ll do it myself even if i am currently bored too only not in bad mood



nice watch!

Quote:

Why don't you ask them? Here is another link for you.... START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

it was a question towards callico jimi not clusterbusters site....
thanks for pointing the link..was it there a long time ?

Back in the 70's there was a big push to ban opiates, in particular heroin, and some in Congress used that as a smoke screen to try to distract the populace from what was going on in Viet Nam.  During the hearings in Congress a lot of non-factual information was put out there demonizing recreational drug use and abuse.  While there was a problem with abuse and misuse some of the grandstanding dragged in LSD, and along with it Psylocybin, which were being actually used for some medical/psychiatric purposes.  I'll not go in to whether they were really effective for all they were used for, and they WERE being abused by those in the drug culture, there were some promising studies being done. 

A couple of Senators are the ones who labeled them "of no medical use", not the medical community, and they were banned in the law that was passed banning opiates.  They are not opiate, but were banned as such.  It worked though.  The Senators got re-elected by harping against drug abuse rather than by dealing with real problems we were having.

Mind you, I am NOT in favor of drug abuse or misuse.  I will very rarely take any pain medication stronger than Ibuprofen even though prescribed because I have seen first hand the danger of dependence and/or addiction.  What I do have a problem with is grandstanding politicians messing with other peoples lives just to stay in power when they don't know what they are talking about.  I've never wished CH on anyone, but there are some of them that definitely deserve it.  ONE K10 and you would find some serious study being done RIGHT NOW!

There is some study being done, primarily in Europe because we cannot get the FDA to allow testing in the US, and it is because of the "anecdotal evidence" provided by a number of folks involved with Clusterbuster who have kept very detailed and accurate records of their trials.  It is they, not the pharmaceutical companies who have done the real leg work to try to get what appears to be our best hope legitimized. 

I cannot participate, as much as I believe in what they are doing, because of personal circumstances.  I have family involved in law enforcement and I will not compromise their integrity.  Therefore, I've been chronic for over 8 years after over 20 years episodic.  Most of that was without any medication after becoming dependent on prescribed narcotics (some would say addicted).  I took myself off, and the withdrawal was not something I ever want to do again.  While I've been chronic I've watched good friends who were also chronic go as much as 6 months PF on ONE dose of shrooms that wasn't enough to get as much of a buzz as one beer.  One of those friends had lost his last job in a series of decreasingly worthwhile jobs, had lost his wife and family, his home and almost everything he had.  He now has a very good job, his life back in the good, and is doing well just for dosing once every 6 months.

We would love to do a "standard accepted procedure of study" just as soon as you can convince our wise and all knowing corrupted government officials to allow it, and as soon as you can come up with the funding for said study.  In the mean time the folks at Clusterbusters are keeping our hopes alive.

If you choose not to participate that is entirely your perogative, but for you to sit there and demean what they are doing when you know nothing about it is wrong.  If you want serious discussion of the subject or if you have real questions you would like answered I will be happy to do all I can to help.  However, the tone I am getting from you is diametrically opposed to that.

Jerry

Excellent post, Jerry.  Very thoughtful, and very thought-provoking.

Best,

George

I wonder what an answer is to a not real question of a not serious discussion according to your opinion..

sorry but you just demean it yourself and i didn't do anything really to help along the way except saying openly my own thoughts and questions which i find sincere.

so i ll just shut it up here if thats the will according to the general mood of the last posts i read and wish truly the anecdotal evidence to lead to a legal med in the end we can buy worldwide from the pharms some day.
If it is meant to happen,it will happen anyway without me asking or not questions...and that's my tone.

Black I appreciate your thoughts and think I understand much of them
It is difficult to show much more than anecdotal data. Most of it initiated on this site.

There are allways the legalities to be aware of with LSD and Psylocibin but there is quality of life that we are more aware of.
I use only the LSA seeds (not illegal where I live) and dont think anyone cares if I feel a little lethargic every few months when I crush a few tiny seeds. I care because I live a vastly better life now with only occasional breakthroughs of CH.

This article by Andrew Sewel an interested researcher and ally in the medical/academic field helps to explain that.
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Calico nice post,

Noone is forced to participate in the CB ways, And I dont think Black is trying to demean anything, just better understand as we all are.
Most past and current research into hallucinogenics is directed to more phsyciatric and functional brain operational characteristics regarding serotonin etc... receptors, synapses, frequencies and alterations inside the mind vs the body whole.
The research papers are plentifull. Most of what we know comes from pouring over many multiples of inputs and arriving at something that allmost makes sense. The science isnt there yet to say this is why it works. But pretty good theories are coming out. I am allways amazed at the way little ideas grow into serious science. I dont think aspirin can be explained yet either nor can oxygen to my satisfaction, but it helps many. Google scholar is a good search platform for more info.

An interesting aside; the discovery of LSD and Serotonin (2 near identical chemical structures, one natural and one synthetic.) occured at allmost the exact same time. Serotonin likely being the suspect chemical for most of our woes.
Its late not sure any of this made sense.

Black, I'm not certain what you have against anecdotal evidence. Anecdotal is simply the collective experience of a group. When that experience is scrutinized under test conditions it becomes anecdotal plus test validated. That's why prescriptions carry the anecdotal experience of a test group as: some may experience headache, nause, nose bleeds, euphoria, sudden death...and then give the percentage of those who report such things. Nothing wrong with anecdotal. It's the beginning of research. lance

I am not a scientist, data collector, survey taker, etc.  I have no idea how any of that works or what it takes to prove a theory or get a drug passed.

I am simply the wife of someone who suffers Chronic Cluster Headaches.  After trying all man made drugs used to treat CH and 3 surgeries, including the Occipital Nerve Stimulator trial, his neurologist diagnosed him Chronic Refractory.  The only thing that has provided him sustained relief without side effects is Clusterbusters.
 
No one ever pressured him to try it, except me.  In fact, he had never been on the message board here or CB.com until he experienced many pain free days.

"My Goal is BOL"  How do we get there?  I don't know. The only thing I have contributed to that goal is my husband's success story.

If you choose not to try the Clusterbuster method, I understand.  There are many reasons not to.  But there are other ways to contribute to this goal, if that is your goal too.  For example, if your concern is how the study is being conducted, get involved with the study.  Learn about it.  Help collect data.  Interview people. Attend CH conventions.  Maybe you can contribute in ways that no one has ever thought of.

Wishing you all success in dealing with CH, in whatever manner you choose.

Lee Ann

   

Quote:

There are many reasons not to.

No, there's really only one. Fear. Once I got past that, a pain-free world awaited.

All I'm saying is that people need to deeply examine the root of their fear. Then ask yourself "What's the worst that could happen?"

The worst almost always exists only in our minds.

I don't normally extol the virtues of this treatment because of one thing - fear. Fear of losing my livelihood. But that fear is also highly unfounded. Nobody could prove anything even if they tried. So as I get over my fear and become more public about it, my hope is that others will work past their fears as well.

Twenty two hundred days ago,  before I ever heard of shrooms being beneficial I ate a jag purely for recreational purposes.  I've been PF since.  Am I in remission or was it the shrooms?  I don't know nor do I care.  I would bust in a second If it came back.

               Potter

Yay Brew and Potter :D

"The oldest and strongest emotion of mankind is fear."
--- H.P. Lovecraft

Brew wrote on Oct 30^th, 2010 at 11:39am:

Quote: There are many reasons not to. No, there's really only one. Fear. Once I got past that, a pain-free world awaited. All I'm saying is that people need to deeply examine the root of their fear. Then ask yourself "What's the worst that could happen?" The worst almost always exists only in our minds. I don't normally extol the virtues of this treatment because of one thing - fear. Fear of losing my livelihood. But that fear is also highly unfounded. Nobody could prove anything even if they tried. So as I get over my fear and become more public about it, my hope is that others will work past their fears as well.

WOW! What a great post...I finally understand what has been puzzling me for years. My own reluctance....

I am a child of the 60's. Have no moral, ethical, or theological objections to "psychedelics". As a young man had no qualms with "using" illicit drugs...with one exception. For whatever reason, I fully bought into the demonization of this one class of "substances"...the psychedelics.

It was...it is...the "fear". I suppose, reflecting, it was the fear of losing at least some form of control while under the influence, and perhaps messing with the perceived tenuous grasp of mental health I had (and still have). Yes, I KNOW we can use sub hallucinogenic doses...but still there's...

Fear? Oh yeah. A deep, DEEP seated fear that I now know is illogical and limiting.... but dammit, all too real.

Trying to drop a phobia, an addiction, a long held belief, is incredibly hard...and not something I've ever been very successful at. This one is my next challenge...but thanks to you Brew...at least I understand what I'm facing. That's a start...

Best,

Jon

Hi guys and gals,

I said I wasn't going to post to this thread any longer since I believed that nothing good was coming out of it. I think that's changed. I applaud the last few contributors, especially you, Brew - you're my new hero!

Ron

There are those who may not want to try busting due to stringent drug testing at their places of employment.  There are also those who have reasons that we may not understand or agree with, but they are *their* reasons and noone has a right to dipute that or disagree with them (ask Clusterchuck why he won't bust).

As to the illegality of psychodelics, LSD was actually legal in the late 1950s'.  The US Army did experiments on soldiers at Menlo Park Veterans Hospital using different psychoactive drugs (LSD, psilocibin, mescaline and amphetamine IT-290).  Back in college, I did a paper on the author of One Flew Over the Cuckoo's Nest.  The subject of the paper was Ken Kesey, the author, and the impact psychodelics had on his writing.  Ken Kesey was one of those that was in the govt. program.  Thus was the beginning of the Merry Pranksters and the advent of the psychodelic scene.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

LSD was made illegal first in California and then the Federal Government made it illegal.

Fear comes in many colors. Like I said, the whole subject still generates fears in me.

Fear is also one of the greatest motivators known to the animal world.

Pinkfloyd introduced a new company this evening on START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. I don't want to steal his thunder any more than to provide the link. I think you'll find that it directly pertains to the discussion here: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Thanks Bonkers.
I never care where the thunder comes from as long as everyone hears it.

I'll post more info in its own thread.

Thanks for the good discussion in this thread.

Bob

Brew:

Your the Man!  I hear and understand your concerns.

CH's alone can end a career!

At the moment My great fear is this head of pain!


Next cycle I'll tell you all about my adventures and results.   ;)

Peace to all,

Boski

Hi boski,

VERY anxious to hear of your adventures/results. Buena suerte! Ron

bonkers wrote on Oct 26^th, 2010 at 11:39pm:

Maybe Maybe I'm too open, too enthusiastic in championing these drugs, but if we don't speak out and let everybody we can know about this, nothing's gonna happen. These drugs will stay illegal and those who choose to break the law and use them anyway, because nothing else works anywhere near as well, will continue to be criminals. No research will be conducted and these magic substances will stay in the shadows. I personally don't intend to stop until these drugs are readily available, with a prescription, to every clusterhead in the world.

Ron,

As you know, I am a successful "buster".  I think it is perfectly fine with DJ that the subject of alternatives are discussed on his boards, but, not everybody who could benefit with busting can use this method due to personal reasons, whether they are employment, or just personal limits that they cannot cross.   

Busting is an extremely difficult and personal decision that each clusterhead must make on his own.  It was not an easy choice for me, but I have no regrets.  As I said, I am one of the success stories.

I agree that the best way to promote the alternative methods are to direct someone to the clusterbusters site where they can get full information, rather than just our personal experiences - they get direct one-to-one help from the people who know the most about busting - rather than just our personal experiences.  This is where they should be directed.

Many of us who are using the alternatives might prefer not to advertise it publicly, but would prefer to IM (or PM) someone privately to help them.

I understand your struggle with your son and his CH and wholeheartedly applaud your efforts to promote the alternatives.  It's just that they are illegal, and many people would be uncomfortable sharing their experiences on a public forum.

Sandy

ok