Ya know, I look at the list of subject headers here and I see people extolling the virtues of Imitrex, Depakote, Lithium, Clomid, Lidocaine, Verapamil, Sansert, Suboccipital injections, and surgery. Worried about side effects, not being able to afford them because of a lack of insurance, their meds stopping to work at all, etc.

None of these things, including Imitrex and oxygen, have the success of psychedelics in the treatment of clusters. You can believe me or not. Believe the dozens of people that have testified to their effectiveness, or not. They've been talked about here for YEARS and the effectiveness remains the same....75-80% of people using them, BREAK their cycles early. People that have been chronic for years, are now episodic and happy about it. Episodes they can control or eliminate.

Do you want to treat one attack out of the 1000 you'll be having this cycle? Inject some imitrex. Want to treat those 1000 attacks with oxygen......fine, order 20 M tanks. Considering to permanently sever some nerves? Even that has a lower percentage of success than psychedelics.

You may have another option.

Have you been taking Lithium and Verapamil every day for the last 20 years and still need an 02 tank? Have you been taking depakote or topamax or imitrex every day for the last 15 years?
Still in pain every day but thankful to the medical profession for lessening that pain by 50%?

You may have another option.

Some of you have valid reasons (if you have a reason, it's valid to me) for not trying them. I understand. Fine. I wish you well all the same and hope that whatever you try works well. We all have to be satisfied with the choices we make. If you choose a more conventional route, fine.

For those considering the options at clusterbusters.com, please consider this....

Over the last 6 years, I've had two cycles. Not the usual 12 (2 per year) That's 10 cycles eliminated.....not the usual 3-4 months of clusters, 4-5 attacks a day. Gone...never started.
That's approximately (minimum) 3600 attacks eliminated....3600 attacks that I didn't have to feel happy about only lasting 15 minutes thanks to 02.

I think it's time for everyone else that has found help with psychedelics, to let everyone here know about it. Maybe it'll help to keep a thread on page one for a while so new people can read about this option. For those that can't step forward, for any reason, that's fine. I understand. For those that can, and have in the past, please stand up and be counted.

Bobw
P.S. Yes, the 20% that haven't been helped are more than welcome to let us know. (except BobP because he just didn't do it right)  ;)

Pinkfloyd wrote on Jun 7^th, 2008 at 7:45pm:

I think it's time for everyone else that has found help with psychedelics, to let everyone here know about it.

Ooh...ooh.... ME!!!
[smiley=vrolijk_26.gif]

i am planning to give a whirl for next cycle- My husband and i have read details on the clusterbusters site-    i want to try to rc seeds.  However- i may be pm you for details on how and when to dose soon-  Are you up for helping a newbie to clusterbusting?

mezza wrote on Jun 7^th, 2008 at 9:34pm:

Are you up for helping a newbie to clusterbusting?

Always happy to help.

Bobw

nani wrote on Jun 7^th, 2008 at 7:49pm:

Ooh...ooh.... ME!!! [smiley=vrolijk_26.gif]

So I see!  ;)

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Bob,
 This is the first thread that has made me take a serious look at psychedelics. Thank you for your pasionate post.

William

Hi

I am very offended by what you posted, what you posted is rude and  degrading,
and in many ways claiming you and only you have the “miraculous”
answer to our common malady!

This is not only unacceptable, it is beyond any  proper
behaviour with any group with a common interest!

You might possess some knowledge, you might possess a possible answer,
but you cannot imply that the only ones using the “CB” way are the ones
that have seen the light, this reminds me of a different kind of fundamentalism…

The research (or being part of a research group) some of us, (hopefully for all of us)
do, is to find an answer, an answer we all (most of us) can share.

I did point out more than once that the “CB” way could (and seems to be)
a good way to reduce and even eliminate our pains, and not only once
I have pointed it out in my country and in other places, the potential of using
“CB”, with some good reasaults, interest, and curiosity.

but  IT IS ILLEGAL!!!!

and therefore it is out of the question for some of us, whether for  ideological reasons
or simply for practical reasons.

I cannot use the “CB” ways!!  I like my job, I need my job!  and I have the age where
losing my job will jeopardize my future, as well as all what is dear to me.
And this thought, or better said alternative, is worse than having  “CH”!!!!

I am invited to a Pain and Anaesthesiology Meeting in Switzerland,
and I was going to talk about CH and also about the “CB” alternative, as a very good
alternative (if legalized), but now after reading your last posting I have the distinct feeling
that I will drop the CB part, and most likely not attend the meeting, posts like this turn me off,
to try and promote our cause, it makes me rethink my commitment to the CH world,
and its needs

YOUR WAY (even so it might be a good way)  IS NOT THE ONLY WAY!!!!

Michael

I don't think Bob meant clusterbusting is the only way.  I, for one, don't think so.  There are many valid reasons an individual shouldn't or might not want to use psychedelics. But 'busting' sure does work, and it isn't mentioned as much as prescription treatments - again, perhaps for valid reasons.

Now and then there is a thread about RC seeds here (and they usually end with the beast on the run) but most threads are about imitrex, verap, prednisone...

So when you look at these discussions, you begin to wonder why people seem to struggle with the same old meds, dealing with the side effects and celebrating when they get even a minor foothold...

Now folks here are dedicated to supporting others in their battle with the beast, and whatever treatment someone is trying, we want it to work for them. So it may seem rude to step up and say, "Look, the verap might not be the best way to go," when someone's verap isn't working so well.

But that's the kind of rude treatment I would want people to show me...

-tommyD

BobW, would you be so kind as to post:

1- The benefits of psychedelic therapy.
2- The side effects of psychedelic therapy.
3- The contraindication of psychedelic therapy : who should use it and who shouldnt and why.
4- The fact that psychedelic substance is currently deemed illegal and what are the risk involved with law enforcement.
5- The long term side effects of psychedelic therapy.
6- The list of what you recommend can be used : RC seeds, magic mushrooms, LSD.
7- Any research, study results available up to date on psychedelic therapy.
8- For the 20% that failed psychedelic treatment, what would be the reason why ?
9- Why the need to detox completely before trying psychedelic and why no med ( such as imitrex ) should be used in while on psychedelic treatment.

I think that would really help the people making an informed decision to try or not to try psychedelic substance for CH.

Thank you very much.

Quote:

(except BobP because he just didn't do it right)

I'll have you know that I have a bag of RC seeds sitting right here and when my next cluster starts I'm going to grind them up, mix them with peanut butter and pack it in my armpits just like you're supposed to!

Some time ago, I recall reading that there was a randomized, placebo-controlled study on either psilocybin or LSA in the works.  (Can't recall which it was.)

Any word?

Best,

George

wildhaus wrote on Jun 8^th, 2008 at 5:45am:

Hi I am very offended by what you posted, what you posted is rude and  degrading, and in many ways claiming you and only you have the “miraculous” answer to our common malady! This is not only unacceptable, it is beyond any  proper behaviour with any group with a common interest! ...

Michael, brush up your English! Bob didn't write anything similar to what you read.



Quote:

but  IT IS ILLEGAL!!!!

As you might know, in Switzerland you can collect almost anywhere any mushrooms you like, you don't need any certificate of qualification to do so.
Come August you can probably find within 10 minutes from you home lots of Psilocybe semilanceata (Liberty caps, in German: Spitzkegliger Kahlkopf. They look like this:


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Quote:

I like my job, I need my job!

If you where (almost) CH-free, and not constantly in a haze from prescription drugs, you could perform even better at your job.



                 [smiley=smokin.gif]

I have posted this morning, (my time) answering Bobs post,
I have had a long conversation with Alien space guy…….
and I take this opportunity to make it clear that I in no way
intended to attack Bob, nor do I question his (good) intentions,
All I try to say is that I perceived his post as he (and other CB’s) is the “only
one” that has seen the light, and the ones that don’t use the CB way
are to be sorry for, because they have not seen the light……

I do apologize to you Bob, I did not once said your way could
be a plausible way, but as long as it is on the ILLEGAL list I can
not use it for practical reasons, nor can I promote it (full harted)
for ethical reasons….. but I do mention it as an alternative, and
point your CB website where ever I can

Michael

wildhaus wrote on Jun 8^th, 2008 at 5:45am:

I am invited to a Pain and Anaesthesiology Meeting in Switzerland, and I was going to talk about CH and also about the “CB” alternative, as a very good alternative (if legalized), but now after reading your last posting I have the distinct feeling that I will drop the CB part, and most likely not attend the meeting, posts like this turn me off, to try and promote our cause, it makes me rethink my commitment to the CH world,and its needs

Why would a post you don't agree with on a message board make you rethink your commitment to CHers?



wrote on Jun 8^th, 2008 at 8:07am:

BobW, would you be so kind as to post: 1- The benefits of psychedelic therapy. 2- The side effects of psychedelic therapy. 3- The contraindication of psychedelic therapy : who should use it and who shouldnt and why. 4- The fact that psychedelic substance is currently deemed illegal and what are the risk involved with law enforcement. 5- The long term side effects of psychedelic therapy. 6- The list of what you recommend can be used : RC seeds, magic mushrooms, LSD. 7- Any research, study results available up to date on psychedelic therapy. 8- For the 20% that failed psychedelic treatment, what would be the reason why ? 9- Why the need to detox completely before trying psychedelic and why no med ( such as imitrex ) should be used in while on psychedelic treatment. I think that would really help the people making an informed decision to try or not to try psychedelic substance for CH. Thank you very much.

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Bob P wrote on Jun 8^th, 2008 at 8:09am:

Quote: (except BobP because he just didn't do it right) I'll have you know that I have a bag of RC seeds sitting right here and when my next cluster starts I'm going to grind them up, mix them with peanut butter and pack it in my armpits just like you're supposed to!

LMAO   ;D

I find this topic very interesting.  I am wondering if any of the ClusterBusters have tried other psychedelics such as peyote, ayuasca, or salvia?  Salvia is actually still legal in some states...

I'm with you on this one, Wildhaus.  I, too, took exception to the tone of the original post.  And before you jump down my throat, Pinkfloyd, I have no problem with those who seek or get relief from 'alternative' therapies.

Goodness knows which 'alternative' therapy is going to turn out to be our cure but it's just that many ClusterBusters come on a bit strong. As our good friend says, "AlienSpaceGuy believes only in scientifically sound methods and hates snake oil vendors".

Like some others, I couldn't even consider such a thing due to its legality but I still dips me lid to those doing the research and 'playing the guinea pig'.

Let the information flow, friends, for knowlege is our greatest defence against a common enemy.  Just let's keep it all within context.

I use methysergide judiciously, which is a legal psychedelic alternative. Not without its nasty side effects, which is why I use it judiciously, but legal nonetheless.

I still like my job, too.

nani wrote on Jun 8^th, 2008 at 11:31am:

[quote author=312F2A222E273335460 link=1212882305/0#6 date=1212918323] Why would a post you don't agree with on a message board make you rethink your commitment to CHers?

Nani,

its the way, the use of words......

The post makes me feel that the hard work (and money) some of us put, in the search for
answers are diminished by the post!


Michael

You can count me Bobw!!

I was chronic from the day the beast showed up. Like many others, I went from Dr. to Dr. trying to figure out was the hell was happening to me, all the while terrified and hiding the pain I was in from my family.  Only after finding this site was I properly diagnosed.

I tried the traditional ch meds Rx by my Dr. and although they did provide relief from ch, I still did not have my life back due to the severe side effects I experienced.  I cannot take other ch meds such as Lithium due to a non-ch health issue.  Steroid tapers are no longer an option for me either.  Triptans are not a reasonable option beause I was getting hit 3+ times a day, everyday.  I did research each med before taking because I want to know what, if any side effects I may experience and with ch drugs there are many to look out for.

Only after trying the traditional meds and not finding relief did I consider the aternatives.  I was not going to give up the fight and because I was in so much pain, I was willing to try anything.  I first started with Kudzu and Taurine.  After 3 months, I was still in pain and only then did I consider RC seeds.

I've been "busting" for 6 months now and they have been mostly pf.  I still get the occasional Kip 7 and some minor hits, but most of them are taken care of by 02.  I never have experiened any "psychedelic" effects after ingesting the RC seeds.

I now have my life back!!!  RC seeds and 02 combined have helped  me when everything else I tried failed.  

This is my experience, YMMV.

Beth  :)


Michael,  I read and re-read Bobw's post several times and I fail to read anything rude or offensive.

I tried RC seeds as my last high cycle was ramping up. Varied amounts, methods, etc. It wasn't my magic bullet, but they did APPEAR to lessen the amount of hits, thus delaying high cycle. I missed a week and high cycle came in with a roar. Conventional meds knocked it back down.

I fully support medical research. That means both unconventional and conventional medications. Chances are a new, mainstream treatment will come from a blend of both.

I'll use what ever works to fight my CH. Right now, it appears that conventional meds do the trick. Will I use seeds in the late fall as my high cycle starts.......yes, but more for experimentation than any thing else. I have an open mind, but I'm going to do what works for me. IMHO, everyone else should do the same. Do what works for you.

You'll find no judgements on your treatment plan from me. I'll just be glad it works.

Bill

Count me in, Bob!  Rc seeds and O2 work for me!

I don't think Bob (Pinkfloyd) meant anything whatsoever in the way that busting was the ONLY way to combat CH pain.  I thought his post was very relevant and informational.  At no point did he say that anyone HAD to try it or was stupid if they did not.

Whether you are chronic or episodic, the pain of a CH attack is debilitating to each and every one of us.  Many suffers have great success with the traditional treatments, yet many do not.  Having the option of trying alternative treatments is just another tool in the arsenal against CH, and should be looked upon that way.  As Bob said, busting may not be right for everyone for whatever reason, but that is an individual decision to be made.

This site, as well as the Clusterbuster site is devoted to supporting other clusterheads, and sharing information with others as to what works or does not work for us as individuals.  By the words "sharing information", I mean ALL information.  If even one person is helped by reading information about psychedelic  alternatives, then what's wrong with that?

Keep up the great work Pink!  Thanks

Sandy

If Bob Wold and others say that it has helped 75 to 80% of people who have used it, and I see no reason to doubt their findings as they are in my opinion very thorough..then I have to say bravo.  To all it has helped I couldn't be happier.  Nope.  No judgements from me either.

Very first dose completely killed my CPH (episodic). No more 6 months on, 6 months off. NOTHING!!!

After the 5th or 6th dose, my 2 1/2 year long cycles no longer arrive. I have short cycles with short, relatively mild hits - that's about it, other than rogue hits (and the sympathy hits I get at all CH gatherings).

Ooh... did I forget to mention that I last dosed in.... 2002 or 2003?

Lizzie


edited to add: I use Zomig nasal to deal with the few rough hits that *do* come now.

Lizzie,
Did you also use the seeds?

Thomas

First of all, let me say that if I offended anyone, I am sorry as that was
NOT my intention. If I was looking for lighting a fire under anyone, it
would be those that have changed their lives with one of the psychedelic treatments, wanting them to let others know.  
Again, it was never my intent to offend, only start a healthy and productive discussion.

I do have an attitude (opinion) about this treatment, it is born of frustration as I watch people suffer with this condition. It is an opinion I have shared with the medical community. I do appreciate all the people that that have put their time and effort into finding solutions.
The quest for answers is the basis of medical advances in treatment of any condition

Yes, myself and other CBers have been know to coming off "strong".
Passion is a strong emotion and I am passionate about this Cluster Headache treatment. My passion also extends to cases where when people show up here after suffering with clusters for 15 years and not ever had oxygen prescribed. This, IMHO, is needless and only prolongs their suffering.  
Evidently others feel the same when it comes to oxygen treatments, their posts could be called strong. It's a similar frustration that we feel.
If you have something that you feel will help people out of their pain...how vocal are you supposed to be? I don't apologize for passion, I admire it in others.

The legality is an understandable dilemma for many, it's this and other "roadblocks" that may keep a sufferer from trying this treatment.
I respect everyone's and anyone's choices, choices are based on their need, on their situation and their understanding.
One of the goals of ClusterBusters is to remove these barriers.  It's these roadblocks that may keep someone that wants to try
it, from trying it, that makes me so passionate, and frustrated. I'm not frustrated "at" those people that can't try it, I'm frustrated
"for" these people.

In all honesty, we are out here advocating specifically for those that have these roadblocks. I've spent a good part of my life the last 6 years, fighting to remove these roadblocks so that everyone can make an informed decision, based upon their own health concerns. So have a lot of other people. Many have put their own liberty at risk. Did Nani appear in that article because it would help her? no.

This research is going off many directions. (3 institutions in the US and Europe) The goals at Clusterbusters are simple. Find something that works better than what is currently available, where ever that may lead. "Polite" doesn't always get you there, though I try to be polite I may unintentionally not always come across that way.
When you've received hundreds of emails from people that have had their lives changed because of a treatment...any treatment, you need to tell others.  I'm sorry if I've lost all patience but my passion grows each day as another email arrives in my inbox.

Bobw
P.S. BobP....try crunchy this time  ;)

I'll be counted in.

Brief background:  episodic for 33 years, usually 2 cycle a year (May and October) for 8 to 10 weeks each time.
O2 responsive, using ergotamines only when I cant get to the O2.

IMO, I've successfully aborted 4 or 5 cycles with entheogens, the "best" was in 4 days.  For me this was unbelievable, better than I could have hoped for.  The last attempt at busting a cycle was in January this year, for some reason nothing was effective.
I've now begun an attempt at prevention, treating just prior to my expected May cycle, it's now June and so far it would seem I've avoided the expected return.

At this stage, this treatment may not be for everyone, due to medical and/or personal issues.  I respect the choices anyone makes for themselves.  Life is a choice, treatment is a choice.  Make yours for yourself based on information and what is right for you.

Over the last 5 or so years I've been rather quiet about my treatments publicly. (my medical doctor is well aware of my choices and has offered his support and understanding)
I've declined newspaper and TV interviews on this treatment for "personal and professional reasons", yet I admire greatly those that are able to and do speak out.

Where will this treatment go?  Who knows.  
Science and medical advances arise from observation, then asking the question "why and how".
We don't have the answers right now, we only have case studies and observational reports.  It's a start and in my opinion a damn good start.

Often when dealing in medications, the answers to how and why are unknown, the human body and it's response are varied and irregular, in most any condition and often in CH.

Just for fun, I looked up acetaminophen (tylenol) or rx.list.com, how does it work and why does it work.  
Their answer to that: "Although the exact site and mechanism of analgesic action is not clearly defined, acetaminophen appears to produce analgesia by elevation of the pain threshold"

Appears to.  How???  Observational evidence only.  
I don't raise this to perpetuate the argumentative potential of this thread, I wish to stop that before it develops.
Instead, lets ask the question "how and why" the entheogen treatment   works and continue to gather the evidence as it arises.  Going forward in search of the answers.

The American Heritage Dictionary defines Science (in part) as:
  1. The observation, identification, description, experimental investigation, and theoretical explanation of phenomena.
  2. Such activities restricted to a class of natural phenomena.
  3. Such activities applied to an object of inquiry or study.

Those than have and are able to join in this search for the science of entheogenic treatment of cluster headache are to be commended, as are those that are also unable to do so for whatever reason.

We're all in this together and together we may find the answers.
Questions, with respect and caring.  
And always honor the choices that other make for themselves.

Regards
Doug

Excellent reply, Pinkfloyd, and I thank you for addressing my many concerns. I'm a skeptic, not a cynic, and there's a major difference.

(PART_1)
Bobw (Pinkfloyd)
Quote:
“None of these things, including Imitrex and oxygen, have the success of psychedelics in the treatment of clusters. You can believe me or not. Believe the dozens of people that have testified to their effectiveness, or not. They've been talked about here for YEARS and the effectiveness remains the same....75-80% of people using them, BREAK their cycles early. People that have been chronic for years, are now episodic and happy about it. Episodes they can control or eliminate.“

form
The Lancet Neurology
Volume 5, Issue 9 , September 2006, Page 732

“John Halpern (Harvard Medical School and McLean Hospital, Belmont, USA), who is instigating studies on psilocybin and LSD for cluster headaches with study lead Andrew Sewell…..
Halpern and colleagues did a questionnaire study of 53 people taking psilocybin or LSD for cluster headaches. Although Halpern says that speculation on mechanisms is premature before efficacy studies are done, 22 of the 53 patients reported partial or complete efficacy from subhallucinogenic doses. If proven in rigorous studies, such efficacy might lie in the serotonergic action that characterises most hallucinogens…… “

22 out of 53 that is “only”  41.82% (which is good by itself) and it was not a study just a questionnaire……..
Bob where do you get your Numbers, have you ever seen a study that supports your claim, a study that
was done by an independent person or institute? or “just” what you have collected? even so I would
like to believe it, some in the medical world say differently……. (see below “The Guardian”)

Bobw (Pinkfloyd)
Quote:
Ya know, I look at the list of subject headers here and I see people extolling the virtues…. Suboccipital injections. Worried about side effects,
I am worried, I think I am doing every thing one can do to try and find out what are the potential side
effects of the “injection” and for that I (the hospital) use very modern equipment and the knowledge of the hospital
I am a treated at, and the will and dedication of good people trying to help me find out all the
information possible, and that as a case study, that can help some of us find relive from CH,
and I still didn’t see the light, I am on my way, I hope, but I see the light on the end of the tunnel,
but its not the only light, just one more (possible) way to battle CH.
Bob can you point me to one Study that was done in the modern time (past the 1980) about “Lysergsäure-diethylamid” or better known as LSD and its possible (or not)  adverse effects on the humans. A study and not testimonials.

Mark Honigsbaum  The Guardian, Tuesday August 2 2005 .
“Peter Goadsby, professor of neurology at the Institute of Neurology, University College London, and the world's leading expert on cluster headaches, is sceptical about the mushroom therapy.
He argues that the relief reported by some patients may be a placebo effect or owing to natural remission.

(PART_2)

But he does believe the cases warrant a proper clinical study, particularly as ergotomine - which contains lysergic acid, a precursor of LSD - has been used to treat migraines for years.
"It's possible that mushrooms have some useful effect but it's far from proven," Dr Goadsby says. "Cluster headaches are such a devastating problem that people will turn to anything that seems to work."
The only study I am aware of, in the world,  evaluating LSD, and not CH related, is:…..  
(mentioned to me by John Halpern in our e-mail exchange last year)

LSD – unterstützte Psychotherapie bei Personen mit Angstsymptomatik
in Verbindung mit fortgeschrittenen lebensbedrohenden Erkrankungen.
Eine doppelblinde, plazebokontrollierte Phase-II Dosis-Wirkungs-
Pilotstudie

(LSD – assisted psychotherapy
in persons suffering from anxiety
associated with advanced-stage life threatening diseases.
A phase-II, double-blind, placebo-controlled dose-response pilot study)

PRINCIPAL INVESTIGATOR:
Dr. med. Peter Gasser;
Facharzt FMH Psychiatrie + Psychotherapie
4500 Solothurn / Switzerland

MEDICAL MONITOR
Rick Doblin, PhD;

STUDY MONITOR
Valerie Mojeiko;

(A link to the Clinical Study Protocol)
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this is a start (you and the CB’ers have most likely a role in pushing this sort of treatment into the minds
of researchers)  and a chance, that one of the pharma giants will pick up on this venue and invest the needed
money for approval of studies and research, and in the R&D of an approved medical solution based on
“Lysergsäure-diethylamid” or better known as LSD, but that is for the moment a dream rather then reality,

Like Brain posted

Let the information flow, friends, for knowledge is our greatest defence against a common enemy.  

and Bob...

I'm a skeptic, not a cynic, and there's a major difference
(Brain very nicely said)

Micahel

AussieBrian wrote on Jun 8^th, 2008 at 3:04pm:

I'm a skeptic

Thanks Brian,
As I've said all along, skeptics are as essential (if not more so) to the research process as those that support that research. Without questions, there are no answers. It takes passion on both sides of the equation to come to the best possible answer, in the end.

Bobw

wrote on Jun 8^th, 2008 at 2:12pm:

Lizzie, Did you also use the seeds? Thomas

I used the mushrooms.

Thanks Babe

Michael,
The portion of the article that you posted didn't tell the entire story and left the numbers a bit out of context.

here is the expanded passage: [my comments in bold brackets]

Results are summarized in table 2 and listed in complete form
in table E-1 (on the Neurology Web site at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE). Of
the 32 subjects with episodic cluster headache, 19 had used sublingual
psilocybin during cluster attacks; 17 found psilocybin to be effective in aborting attacks (defined as ending the attack within 20 minutes).

[17 of 19 aborted attacks; 89%]

Only one subject had used sublingual LSD for an acute attack, reporting it to be effective. Twenty-nine subjects had used psilocybin prophylactically during a cluster period; 15 (52%) reported that it was effective (defined as causing total cessation of attacks), and a further 12 (41%) reported partial efficacy (defined as attacks decreasing in intensity or frequency but not ceasing).

[17 of 19 reported at least partial efficacy 89%]

Five of six LSD users reported cluster period termination.

[5 out of 6; 83%]

Twenty subjects ingested psilocybin during a remission period; 19 reported an extension of their remission period, in that their next
expected cluster period was delayed or prevented entirely.

[19 out of 20 extended remission periods; 95%]

Four of five subjects reported similar remission extension with LSD.

[4 out of 5; 80%]

Of the 21 subjects with chronic cluster headache, 5 of 7 reported
that psilocybin aborted a cluster attack;

[5 out of 7; 71%]

10 of 20 reported that psilocybin induced a complete termination of cluster attacks; and a further 8 reported partial efficacy.

[10 out of 20 CHRONICS complete remission 50%]
[18 out of 20 CHRONICS at least partial remission 90%]

Of two chronic cluster headache patients who ingested LSD, both at subhallucinogenic doses, one reported no attacks for 10 days, and the other reported none for 2 months. Interestingly, 22 (42%) of the 53 subjects reported partial or complete efficacy (as defined above) from subhallucinogenic doses of psilocybin or LSD.

[this passage speaks to dose size, not efficacy]

Do I have data from clinical trials to support the above information? No, not yet. But, this just isn't a "report"
It is a case series with all data approved by a peer review committee and carried out in an approved scientific manner. It is the first step. The trials will be coming. They are very costly and time consuming, and no, we don't have any pharmaceutical companies coming to our rescue.

As to Prof. Goadsby, the remarks you quoted were made before the Neurology article. I hope everyone at the OUCH conference asks him for his updated views.

Bobw
my "preview" doesn't work so I hope this posts ok

wildhaus wrote on Jun 8^th, 2008 at 3:31pm:

( have you ever seen a study that supports your claim, a study that was done by an independent person or institute? or “just” what you have collected?

This information wasn't collected by me or clusterbusters. It was collected by researchers at Harvard Medical School. The process for publishing a case series like this is very much different than my collecting data. The process of collection and the findings are approved by a peer-review board.

Don't you find it interesting and a bit odd that there isn't an avalance of studies about the bad side effects of LSD and psilocybin?
If you can't find any studies outlining the adverse effects of psychedelics like LSD and psilocybin, there is a good reason for this.
The only people spending any money researching these things, other than the few regarding clusters, OCD, PTSD and a few others, are the government. The government has spent millions trying to find out the dangers. They don't spend much time publishing the reports that advertise the safety of illegal drugs.

I will try to find more data for you. We will be conducting phase two trials. Phase one trials test the safety of a treatment. The safety work has been done.

here is one report by the Dutch government you might find interesting;
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I imagine you've seen the British study published in the Lancet about the dangers of drugs.
here is a link to an article about it.....I don't have the Lancet link right here....
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

You'll notice that psilocybin in nowhere to be found

Bobw

Back in Nov 2006, I wrote to Dr Sewell asking about using mushrooms for CH as Daniel was considering trying it. This is the email I received from Dr Sewell.

" Hi Annette!

I’m sorry to hear about your husband. As you are no doubt aware, cluster headache is a devastating disease which is inadequately treated by conventional medications.

I have attached the paper that I co-wrote with John Halpern and Harrison Pope describing our observations on the psilocybin treatment. I encourage you to take it to your neurologist and discuss it with him before trying anything!

R. Andrew Sewell MD
Alcohol and Drug Abuse Research Center
Harvard Medical School/McLean Hospital "

So I took the paper to my neurologist Prof Spira and he told me that there was not enough information there to convince him of the efficacy and safety of the substances.

The paper was not a study or a trial but a collection of data from existing users which suggested maybe psychedelic substance does have good therapeutic effect on CH. The conclusion was that since many existing users reported good effect it was considered worthwhile to study it further, maybe as a randomised, double blind trial.

I believe Dr Sewell and Dr Halpern subsequently applied to Harvard University for fund and authorisation to start such a trial but since then I have heard nothing more.

Please BobW, tell us if there is indeed a randomised, double blind study currently underway ? Thank you very much

On the other hand, I would like to voice my opinion of how this thread was started. BobW opening post was all about the benefit of psychedelic treatment, no mention of possible problems or side effects or contraindications to its use. When I asked further, Nani pointed out that the answers to those questions could be found in clusterbuster website.

My question is: Why not have an opening post outlying BOTH the positive and the negative effects of using psychedelic substance for CH ? Wouldnt that be more transparent to readers? Then if anyone has a more specific question it can be referred to the website.

My personal feeling, when reading an opening post advertising ONLY the good point then urging people to another website where the discussion forum is kept off limit to guests, is similar to how I feel about a snake oil peddler coming here proclaiming the efficacy of their magical products then ushering enquiries to their own websites.

I am not criticizing BobW personally nor the use of psychedelics, I just felt uncomfortable with the way it was "advertised" .

Pinkfloyd wrote on Jun 8^th, 2008 at 5:32pm:

The only people spending any money researching these things, other than the few regarding clusters, OCD, PTSD and a few others, are the government. The government has spent millions trying to find out the dangers. They don't spend much time publishing the reports that advertise the safety of illegal drugs. I will try to find more data for you. We will be conducting phase two trials. Phase one trials test the safety of a treatment. The safety work has been done.

Thanks BobW.

Do you have the information on the trials or whatever it is the government has spent millions on ? and what are the outcome ?

Also who are WE in these two trials you are talking about ? What is the abstract of these trials ? Have you got any data on the result of the first phase on the safety issue ?

Thanks again

wildhaus wrote on Jun 8^th, 2008 at 11:27am:

as long as it is on the ILLEGAL list I can not use it for practical reasons, nor can I promote it (full harted) for ethical reasons…

First of all it isn't illegal everywhere. What's the problem with going to the Netherlands for a short trip and just try it once?

And "ethical reasons"... lol ,sorry for being harsh but that's a bs. What do you mean by "ethical reasons"?

Quote:

First of all it isn't illegal everywhere. What's the problem with going to the Netherlands for a short trip and just try it once?

The problem is that trying hallucinogens on the basis of anecdotal evidence (even strong anecdotal evidence) to treat CH is not equivalent to drinking lots of water, say, to see if it helps--or going to the supermarket to buy an energy drink and giving it a go.  Everything has consequences, but the consequences attending water-drinking or ingesting an energy drink are inconsequential.

Legal issues aside, I imagine that acquiring, manufacturing, or trying hallucinogenic substances bothers a certain percentage of people for many reasons that have little or nothing to do with whether or not those substances are legal.  It's not simply a matter of what they can or cannot get away with.  

I don't mean to personalize this, but...

Each person has to weigh the potential benefit against the consequences--and the consequences are not merely legal.  They involve questions of accountability to one's self and to others, and yes--questions of personal morality, if you will.  Does one's desperation outweigh the message that is sent to others by using hallucinogenic substances?   Does one's need for an effective treatment trump a firm personal stance against the use of illegal drugs?

I will not presume to answer those questions for others--they need to search their own hearts and minds for the answers.  I will not condemn anyone for the decisions they have made and the actions they have taken.  I don't live their lives, and--although I can comprehend their pain--their pain is their own.  They remain my friends, and my brave companions.  No harm, no foul.

With all that in mind, I prefer, personally, to maintain a neutral position on the use of hallucinogens in the treatment of CH.  I've gotten along thusfar without them, and I can certainly wait a bit longer until one or more objective, clinically-controlled trials are completed showing hallucinogens are effective and safe in treating CH.  If they are, I'll be more than happy to acknowledge their efficacy.  

I doubt that I'm the only one who feels that way.

Even if they are proven to be effective, I likely will never decide to try them, however.  It just doesn't work for me, on many levels.

YMMV.

So no--I won't be visiting the Netherlands anytime soon.

All the best,

George      

[quote author=73717B6673717E140 link=1212882305/25#38 date=1212979255
 Everything has consequences, but the consequences attending water-drinking or ingesting an energy drink are inconsequential.

[/quote]

Nice post George, thank you.

Just an interesting point about the statement about drinking water being inconsequential.
Not to make a point other than this story being interesting, at least to me...maybe others.

During the time the case series work was being done at Harvard (the report in Neurology) I approached the powers to be at Harvard to see if they would be interested in doing something similar with the waterx3 treatment. Wanting to see if something could come of it, including letting more people become aware of the treatment option and also to see if, 1, it could be improved upon by determing how and why it works (for some) and 2, if we could come up with a set process for helping people. Such as, how much is best , etc.
(see...clusterbusters looks everywhere for help, not just hallucinogens)

Anyway......even though Harvard was willing to become involved in this process for mushrooms and LSD, they were not willing to take a chance on WATER.
They felt it was too dangerous and that they could be held liable if anything went wrong..and someone actually died from drinking too much water.
You can enter this into your Believe it or Not folder, but it's true.
Now, I'm not saying that Harvard believes that water is more dangerous than LSD. (although they chose to monitor an LSD/psilocybin case series and not the water, due to safety concerns)
There are dangers with drinking too much water and people DO die from drinking too much water.
They felt asking people to "drink a lot of water and see what happens to your clusters" left it too open for people to drink more than what was safe. People think water is so safe, that if say 8 glasses a day was good for their clusters, they may choose to drink 40 glasses to see if it was better.
There are also other heath problems that could cause some people to have a higher risk of serious problems from drinking too much water.

They felt that even if we told them how much to drink, they might drink more, due to its being......inconsequential.

People don't think of LSD or Psilocybin in this way so the fear of overdoing it, isn't as large a fear with psychedelics, as it is with water.

So, there you have it, nothing is inconsequential under the right circumstances.

Bobw

Quote:

So, there you have it, nothing is inconsequential under the right circumstances. Bobw

Point taken, Bob, and thank you.

Best,

George

Here's my story; more eloquently put than I ever could have:

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

Original source: Arran Frood - Nature Medicine; January 2007

As with most journalism these days, there are a couple of untruths.  For example, you may want to reconsider the statement "...a respectable middle-aged man..." ;)

Also, if you download the PDF, the author apologises upfront for the blatantly incorrect photograph of the medication on page two; it was the editors what done it ::)

-Lee

Hello everyone,

I only read the boards these days, be it right or wrong, I chose not to post anymore a few years back.
You offer great support here to sufferer's, & to those of you who frequent this place on a daily basis giving that support, I raise my hat to you all.

I am a member of ClusterBusters, & very proud to be too. ClusterBusters saved my life. I have had CH for over 20 years now. I'de had every possible CH Med the Neuro's had to offer, some worked for a while, some not at all, but alway's the CH would return with a vengance.

So Approx 3 years ago now I decided to give the RC Seeds, & the Psilocybin a go, & to cut a long story short, I could'nt believe the success I had with them.....WOW!!... It stops the pain.
At the time I was a member of OUCH(UK) but what I found to be a real hard pill to swallow was. Why wasn't this information available to me when I first joined?...Why was the subject so Taboo?...Why were we not pushing the medical people harder about the success sufferers were having using RC's, & Psilocybin?

Like Bob W, I had a passion, & started to post about my success with Alternatives. I too was branded aggresive, several months later they banned me, just as they did with Flash....
Please don't let that happen here. Why be so hush hush about something that has the success rate that RC's, LSD, & Psilocybin are having.

In the last 3 years  since starting on the ClusterBuster treatment I have managed to completely abort every cycle, apart from the last one, which is now under control again, & up to date, I am not suffering any noticable side effects.

I do hope this post doesn't offend anyone, or cause anyone to self harm....

CArl...

Quote:

I use methysergide judiciously, which is a legal psychedelic alternative. Not without its nasty side effects, which is why I use it judiciously, but legal nonetheless.

I wonder if daily doses of RC or shrooms would have the same side effects?

The survey numbers are just numbers that can be skewed by many things.  The people they worked for are anxious to tell the world they worked.  Hell yes I'll join the survey.

Those they didn't work for are less anxious.  I think the survey called for the release of your medical records.  Maybe someone they didn't work for would be less anxious to release their records (hey, it's bogus, why shold I give some guy I don't know my medical records).

We'll never really be sure of the numbers until a trial is done.

Quote:

We'll never really be sure of the numbers until a trial is done.

 Exactly.  

It's time for an actual trial.

Asking that people try substances with potentially life-altering consequences to treat a medical condition is asking a lot.  I don't think it's unreasonable to expect a lot in return.  

It's been said that extraordinary claims require extraordinary evidence.  One (or better yet, several) well-crafted clinical trials will bring about more positive, lasting change than any amount of passion and conviction.

Best wishes,

George

Edit to add:

Carl, as has been pointed out several times before, the decisions made and the actions taken by another message board are outside the control of the admins. of this message board.  I've not seen any reasonable discussion of alternatives banned here, at any time.  

If it's all the same to you, I'd just as soon not see a very civilized and enlightening conversation be sidetracked into an analysis of "who killed who"--somewhere else.

Thank you.

Quote:

Please don't let that happen here. Why be so hush hush about something that has the success rate that RC's, LSD, & Psilocybin are having.

Caqrl, I think you're carrying some baggage there boy.  This place has been anything but hush hush regarding alternatives.  It's been discussed freely since day one and will continue to be.

I want to know, why hasnt BobW answered any of my questions ? Everyone else's questions got answered but mine ?

Am I supposed to be  :-X ?

The answers to everyone's questions is available at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Scroll down the main page about halfway and read the Spring 2008 report for additional info.

nani wrote on Jun 9^th, 2008 at 11:22am:

The answers to everyone's questions is available at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE[/url] Scroll down the main page about halfway and read the Spring 2008 report for additional info.

Thank you, Nani.

Reading the report, I note the following:


Quote:

Psilocybin and LSD research The protocol designs for the clinical trials have reached the point where we feel they will not only be submitted to all the necessary agencies in 2008, but we fully expect approvals and scheduling of the first patient to legally receive a psychedelic treatment for their cluster headaches, to take place in late 2008- early 2009.

I will be following updated information on this with interest.

Best wishes,

George

It's been along time since this subject got this kind of attention.
I tried "accepted" meds once, felt like crap and suffered more than ever. I tried RC seeds and they worked. Prevent and abort.
For the skepitics, don't knock it until you try it. The result should be evidence enough.

Note:  Alternative users tend to be a little defensive.

I am sorry but I could not find the answers to my questions reading the CB website. There is no mention anywhere of what BobW talked about that the Government has spent millions to find negative effects of psychedelic substance and came up with nothing, nor is there the result of the initial phase study of the safety of psychedelic treatment.

Can someone from CB please point them out to me? Thank you very much.

Also in the 2008 report, it was said:

Psilocybin and LSD research
The protocol designs for the clinical trials have reached the point where we feel
they will not only be submitted to all the necessary agencies in 2008, but we fully
expect approvals and scheduling of the first patient to legally receive a
psychedelic treatment for their cluster headaches, to take place in late 2008- early
2009.

So you have not submitted the protocol yet but you expect approval in the next 6 months so that scheduling of the trial can start late this year or early next year ? I have never heard of protocol for any trial getting approval within 6 months so I cant wait to hear of the outcome.

Commonly, more than one successful trial is needed to be able to confirm the validity of the data, so is there further plan for other similar trials down the pipeline ?

Are we really going to beat the snot out of this subject by parsing every other post down line-by-line?

If there is no single answer to these things - which I think is pretty much universally agreed - then why would we question legitimate input from verifiable fellow clusterheads?

Not everyone's CH is the same. Not everyone's results with conventional meds are the same, just as they aren't with alternatives.

Just in our little world here, the information is naturally skewed toward those with the most severe instances of CH.

I'll stand up and be counted. But, I also don't choose to tell folks who have years of positive results from conventional meds that what they're doing is wrong or "less than".

Count me.  Without a doubt, it was highly successful for me. And even though I know it is illegal to ingest, I told my bosses what I was doing, I told my doctors what I was doing, I told my family what I was  doing, and I'll continue to tell anyone who cares to  hear. I am not fearful of what COULD happen with it, I am more fearful of what I KNOW will happen without it.

Seeds worked for me. I got my life back after 22 years episodic. Though it didn't fully break the cycle, it gave me days of pf time and only minor hits when I did have any. I'll never go back to conventional meds again.

So count me.

seasonalboomer wrote on Jun 9^th, 2008 at 1:42pm:

I'll stand up and be counted. But, I also don't choose to tell folks who have years of positive results from conventional meds that what they're doing is wrong or "less than".

Perhaps I am simply naive, but I haven't noticed anything like that on this thread, Scott.

With conventional meds, it's always good to have corroborating evidence from clinical trials showing that the substances in question are effective in treating a particular condition, and relatively free from harmful effects.  

I see no reason why we should not expect the same evidence about alternative treatments.  If such things are in the works--well and good.  

Best,

George    

washed-out wrote
And I quote

“And "ethical reasons"... lol ,sorry for being harsh but that's a bs. What do you mean by "ethical reasons"?”

As I do not engage in discussions with members that use phrases that I most of the time ignore,
I will ask the author to rephrase his statement, and he might get an answer, just a bit of respect,
one cannot regard an other opinion with the terms used above, even if one has a different point
of view.

I was looking forward to have an interesting, productive, and most of all beneficial discussion to us all,
but now I am out of this thread…..  I will be still review this thread, out of curiosity, interest and
the pure pleasure of learning.

Sorry Bob I honestly was hoping to see this thread develop, and provide us with a good exchange
of info. opinion and knowledge……

Michael

It appears to me that this thread is starting to drift in a different direction than was initially intended.  I believe what Bobw was trying to accomplish was to have people with the experience of success with alternative meds to speak up.  Of course, people are entitled to their own opinions, but it is starting to turn accusatory and hostile.  Honestly, I expect better from people.  We are a unique lot of people, who for the most part are left to fend for ourselves when it comes to finding treatment.  I personally, like reading about the positve experiences with alternatives and am strongly considering going this route.  I don't mean to bitch, but is a little more dignity too much to ask for?  

Note:  Alternative users tend to be 'VERY' defensive.
;)

Hola, one more to be counted. I'm also a proud clusterbuster, one of the few "legals". Here is ilegal the traffic or public consumption, so I put my order in Internet, they ship by fedex from Holland (EU) to Spain and I take my mushies at home, legally until now. It looks that the Dutch government is going to ban them also.
25 months ago I began to get my life back, after 5 years episodic, 4 months a year, in fall, and 2 years cronic (3 cycles a year, thanks to the all the "normal" medicines), the CB treatment broked the  pattern, gave me 1 year PF, 15 dias of a rouge cycle, 9 more months of PF, 2 months of cycle with 98% hits aborted with O2, and now I'm 6 months pain free again and "tripping" :) to Peru in 21 days on holidays (yes, flying a lot) where I'll try to taste Ayahuasca and compare it's effects with psilo.
What I can't understand is why some people are "against" a treatment, I'm really "hallucinated" with that.
Saludos
Poli

RC seeds ROCK!
Shrooms ROCK even more better.
These are demon ass kickers. No doubt in my mind.Finally something that works.
Negative comments are all directed to the big bucket of pain I have not had to endure. It sits adjacent to the pile of money I have saved on pharmacuticals.
Thanks to clusterbusters and ch.com always.
thebb
Hi everybody... [smiley=headbanger.gif] [smiley=headbanger.gif]

I'm waiting for my RC seeds to come in, which from what I understand there are no laws against consumption of RC seeds.

Is this the case?

LostAgain wrote on Jun 9^th, 2008 at 3:19pm:

I'm waiting for my RC seeds to come in, which from what I understand there are no laws against consumption of RC seeds. Is this the case?

That varies from state to state. In most cases, it is legal to buy them and possess them, but not to buy them for ingestion, or to ingest them. Of course, law enforcement would have to have a reason to think you are doing so and an interest in pursuing something as relatively innocent as morning glory seeds.

seasonalboomer wrote on Jun 9^th, 2008 at 3:52pm:

LostAgain wrote on Jun 9th, 2008 at 3:19pm: I'm waiting for my RC seeds to come in, which from what I understand there are no laws against consumption of RC seeds. Is this the case? That varies from state to state. In most cases, it is legal to buy them and possess them, but not to buy them for ingestion, or to ingest them. Of course, law enforcement would have to have a reason to think you are doing so...

You mean like posting your intentions on a public bb service? ;D

wrote on Jun 9^th, 2008 at 2:31pm:

I believe what Bobw was trying to accomplish was to have people with the experience of success with alternative meds to speak up.  Of course, people are entitled to their own opinions, but it is starting to turn accusatory and hostile.  Honestly, I expect better from people.

Why did BobW want people using psychedelic substance for CH to speak up here ? Obviously he wants more people to know about it and to try or to start using it. Is it because he has strong new scientific evidences that the treatment works and he would like to spread the words? Or is it because he is trying to "recruit" more members to the website because CB is in need of fund as per the 2008 report ?

First of all, since the consumption of the substance is illegal, why does he want people who use them to go to a public forum and admit that they are using it ? There is a certain degree of risk involved here for ANYONE who publically announces that they are doing something illegal. So far, there has been no investigation or arrest yet but it does not mean the possibility is not there.

It should be up to the person whether they want to speak about it at all or not, either privately or publically. Nobody should be asked to talk about the fact that they are doing something illegal, even if its to treat their medical condition. On the CB website itself, the forum is hidden away. When I asked why this was so a couple of years ago, I was told that it was kept hidden to protect the members and users. If it is so, then why come here and ask people to post about it publically. Isnt that hypocrate?

Since CB is the only source for psychedelic treatment, I would venture to say that almost all people who use these substance would have come into contact with BobW or to other core members of CB and receiving assistance from them. Now that BobW came out personally asking them to step forward and speak up about it, in a way, wouldnt it be almost like blackmailing because the people would feel obliged to do so ? Is that really ethical ?

The fact is, there is still no proper study or trial underway yet. From what I read on the CB 2008 report Dr Halpern is going to submit his proposal firstly to the hospital IRB and then the FDA for approval but in his own words "we could gain approval within a few months (no guarantees, though)" so it will be a while coming yet before we will have ANY real data on this. Thats why BobW still has to rely on personal accounts of users to advertise CB. However, in doing so, he is possibly exposing people to legal scrutiny and/or investigation which may lead to detrimental effects in their lives and work, is it a respectable thing to do ?

I believe that instead of asking CHers to come forwards talking about their use of illegal psychedelic substances for CH, it would have been a lot more interesting, worthwhile and helpful to discuss about what the latest scientific finding has been as published in the CB 2008 report.

I will attempt to do so, please correct me if I am wrong :

1- Is it necessary for the treatment to contain hallucinogenic property to work ?

We all know Sansert is the closest derivative to LSD without the hallucinogenic effect and it does work very well for some people like our own Bill ( Brew ) here.

I posed this very same question to BobW 2 years ago and was told " We dont know but it appeared so ". It seems Dr Halpern and Dr Passie are asking the same question and setting out to find the answer.

Passage deleted by DJ for copyright reasons

Therefore, the answer to that question is still " We dont know".

Annette,

You seem to be getting really worked up over something you refuse to try.  Why does this bother you so?

( Cont )


2- Are the up coming studies and trials about RC seeds and mushrooms ?

The short answer is no. The studies are on purified extract of LSD, LSA and psilocybin.

From the report " Dr. Andrew Sewell’s PowerPoint presentation. We
were given an in depth report on his ongoing LSA study as well as his plans for presenting his research to upcoming professional conferences. He also had more definitive information to give us from a chemist regarding the best extraction method for LSA containing seeds. " and " My presentations at the conference focused primarily then on the first projects for episodic and chronic cluster headache with psilocybin and lysergic acid diethylamide, respectively" .

My understanding is that partipants in those studies will not be given seeds or mushrooms to consume but to be given purified and possibly synthethized psilocybin, LSA or LSD to take. Is there a difference, of course there is.

The closest example is that of nicotine and tobacco smoking. Smoking tobacco delivers nicotine effects to users, but it also delivers a whole host of other chemicals, some turn out to be carcinogenic as we all know. Nicotine itself is addictive but not deadly. Its those other chemicals found in tobacco and tobacco smoke that cause the long term side effects like emphysema and cancer.

The same case scenario can be found here with LSA, LSD and psilocybin vs whole seeds and mushrooms. Since the trials will not be based on the consumption of seeds and mushrooms , but on the purified extracts, one will not be able to advocate the safety issue when using seeds and mushrooms for CH. Therefore, it is misleading to announce that the first phase of safety testing has been completed, implying to readers that using seeds and mushrooms are without possible serious short time and/or long term side effects. We simply dont know yet, unless BobW and CB can advise otherwise.

Even if the trials come back with glowing results indicating that LSA, LSD and psilocybin are safe and effective to use, it still does not mean that consuming whole seeds and mushrooms is too. It will only confirm that synthetised, purified and dose controlled ( most likely ) pill forms of LSA, LSD and psilocybin may be safe and effective.

Therefore, regardless of the outcome of these trials, the recommendation to people choosing to use seeds and mushrooms for CH should still be " make sure you read up as much as possible, educate yourself, weigh up and down all the risks involved both medical and legal, bearing in mind that there are a lot we dont yet know, before making the decision to use or not to use " .

Once the person does that , I most sincerely respect that decision.

wrote on Jun 9^th, 2008 at 9:23pm:

Annette, You seem to be getting really worked up over something you refuse to try.  Why does this bother you so?

I am not getting worked up on anything. I did not refuse to try. My husband refused to try. He is the one who has CH. We did consider very seriously to try it 2 years ago in 2006. We wanted to be educated about BOTH the positive and negative effects of either seeds or mushrooms. We went as far as ordering the seeds while we studied up on the topic. The seeds are still sitting here on my desk.

Unfortunately, apart from personal accounts of how it may work, there is no other reliable resource otherwise. In the 2008 report , it said : " Out of 110 people using it, 73 ( 66.4 percent ) had positive results ". We wanted to know if unfortunately he falls into the 33.6% that it does not work for, will he be risking anything both in the short term and or long term, health wise, beside the legal risk?

Psychedelic treatment, legal issue aside, has very powerful effects on the persons brain, both in cognitive function as well as psychological function. Its not something to be taken lightly. Taking risk with ones physical health is serious enough, taking risk with ones mind can lead to detrimental effects.

Incidentally, I have also heard of personal accounts of people having really bad effects trying the treatment. They do exist, they just dont get heard.

Since the presentation from BobW is but about how good the treatment is, while we all know everything has its good side and bad side, I am just trying to alert the people to the possible bad sides, while hoping to gain further information for myself, so that everyone can make a fully educated and informed decision. What is wrong with that ? I did not say to anyone, dont try it, did I ? I am only saying please make sure you know both sides of the coin before deciding to choose head or tail .

Or are you saying that anyone who decides NOT to try should not speak their mind or voice their opinion ?

Anette, have you another nit to pick, or can we hope you soon stop hogging this thread?



                 [smiley=smokin.gif]

Count me in.

For over 30 years I had been afflicted with major cluster headaches all at the extreme levels of pain. Averages of 8-12 hits per day.

For twenty plus years I went from medication to medication, therapy to therapy. Oxygen was tried again and again by me and unfortunately I am of the 30% that O2 provides no aide and maybe the .01% where oxygen aggravates the CH.
I had tried 95% of the drugs known to aide others in the battle against this horendous pain we know. Some pharmaceutical drugs did nothing at all, most only made the issue worse with side effects and the inability for me to live life at 100%
Obviously daily living was a chore more often than not with CH. Add to CH the compounding effect of what some medications can and do do and life wasnt allways pretty.

For the ten years prior to CB methods I lived with extreme CH without medications of any kind. For me my attacks were as strong as ever but they were clean. The hits came and they went this allowed me to live life a little better and to be clear of mind between the hits.

Three years ago I found out about the cluster busters and RC seeds on this site. Granted it was a chore breaking a well entrenched cycle of pain, but with the support and help of many here including Bob W, Flash and many others mission was accomplished. I became pain free.

That was allmost 3 years ago that I first tried the seeds. Since January or so of 2006 I have not had amajor hit or bout with CH.

I dont think I am in total remission I believe I am simply aborting complete cycling. I dose with seeds on average every 3 to 6 weeks. Symptoms begin to return if I dont pay attention.
For these years if I spent a hundred bucks on RC seeds I would be surprised.

Side Effects are none, zip, nada for me anymore. I have never hallucinated with the very low doses I use, in fact I feel the same effect I do from a couple advil or tylenol. There was some lethargic feelings for a few hours after a dose initially that followed when first I tried them . Life is currently at 110%. I no longer walk with fear that at any moment I may be looking for the door to suffer in silence.

Thanks ClusterBusters I count myself as one.

Annette,
No, I am not trying to say people oppossed to these methods should not speak their mind.  You on the other hand have spoke your mind, and spoke your mind, and spoke your mind, asked a question, spoke your mind, spoke your mind about how your question has gone unanswered, answered your question and spoke your mind, and blah blah blah....

I think it is great you are supporting your husband through his pain, this really says something about your character.  At the same time, you are comparing people to snake oil salesman and accussing people of trying to drum up buisiness.  For someone who is not getting worked up about something you sure have a lot to say about something.  

You, in your number of posts, mentioned a letter from Dr. Sewell.
"I have attached the paper that I co-wrote with John Halpern and Harrison Pope describing our observations on the psilocybin treatment. I encourage you to take it to your neurologist and discuss it with him before trying anything!"
Is it possible we can see this letter?

You also mention personal accounts of people having really bad effects trying the treatment.  Is it possible you can give us those accounts in some way.  I am really curious to hear those as well.  I would like to read up as much as possible, educate myself, weigh up and down all the risks involved both medical and legal, before making the decision to use or not to use for the treatment of my pain.  Can you respect that?

wrote on Jun 10^th, 2008 at 1:52am:

Annette, No, I am not trying to say people oppossed to these methods should not speak their mind.  You on the other hand have spoke your mind, and spoke your mind, and spoke your mind, asked a question, spoke your mind, spoke your mind about how your question has gone unanswered, answered your question and spoke your mind, and blah blah blah.... Is there a limit on how often one can post in this thread? I kept speaking because my original questions were never answered properly apart from " go to CB website and read for yourself ". When I went to the site and read the latest annual report, I found more things I wished to talk about . Whats wrong with that ? Or is discussion discouraged ? For someone who is not getting worked up about something you sure have a lot to say about something.   It can be called " getting worked up " or it can be called " passionate ". People do talk at length about things they are passionate about. My passion is to find out as much information as I can on BOTH the efficacy AND the potential risks and problems. You, in your number of posts, mentioned a letter from Dr. Sewell. Is it possible we can see this letter? This letter is a copy of the case study done by Dr Sewell and its copyrighted. I can not post it here publically without his permission. BobW has a copy of it and I am sure if you write to Dr Sewell directly he will send you one as well, or you can ask CB as I believe this study had been presented at their conference and dicussed extensively. Or you can purchase it online, I can give you the link if you wish. You also mention personal accounts of people having really bad effects trying the treatment.  Is it possible you can give us those accounts in some way.  I am really curious to hear those as well. The people who have told me their stories dont wish to share their experience publically and I need to respect their wish. I recommend you spend time getting to know the people on this board , you will slowly get to know their stories. I would like to read up as much as possible, educate myself, weigh up and down all the risks involved both medical and legal, before making the decision to use or not to use for the treatment of my pain.  Can you respect that? Of course I respect that. I have no doubt about the efficacy of psilocybin, LSA and LSD in the treatment of CH. My only concern is the legality of the material currently available, namingly seeds, mushrooms and LSD ( I dont even know where people can get LSD from ), and the short term as well as long term side effects of using them for CH. If you or anyone have done the homework, are fully aware of both the risks and the benefit of the treatment and choose to use it then Kudos ! I just dont wish to hear it made out to be safer than it may realistically be

AlienSpaceGuy wrote on Jun 9^th, 2008 at 11:13pm:

Anette, have you another nit to pick, or can we hope you soon stop hogging this thread?                  [smiley=smokin.gif]

Is what I am posting here considered "hogging" the thread ?

Why and how is it " hogging" the thread ? I would consider it formal discussion instead. Are you telling me that I am not allowed to post in this thread anymore and that I should shut up ? That only people who have something good to say about the topic should post ?

Annette,
You are way out of line. Accusations of blackmail, dubious motives and outright misinformation is uncalled for and unappreciated. If ever there was a group of folks that have been more annal about preaching self education and caution, I don't know who they are.
I for one, couldn't give a rats a-ss if studies are done or not. It's a selfish attitude I know but the stuff worked for me and didn't need a study to tell me that.

BTW it is not illegal everywhere. This is a universal website and the information goes where it is needed. Many can buy, grow and use without fear  

Give it a rest my dear, step back and chill. Ask your questions but not in the tone of a petulant child.
added
For the rest of you, I apologize for allowing this person to get to me this way. This thread was meant to be helpfull I'm sure, but has become adversarial and that is a shame.

wrote on Jun 9^th, 2008 at 9:36pm:

Therefore, regardless of the outcome of these trials, the recommendation to people choosing to use seeds and mushrooms for CH should still be " make sure you read up as much as possible, educate yourself, weigh up and down all the risks involved both medical and legal, bearing in mind that there are a lot we dont yet know, before making the decision to use or not to use " . Once the person does that , I most sincerely respect that decision.

Annette, do you honestly think that any of us who have chosen to try an alternative route to combat our CH did not educate ourselves thoroughly, weighing the pros and cons, both medical and legal before making our decisions?  

Do you think that we are sheep who blindly follow our shepherd?  

Do you think that we don't have the brains to research something that will impact our lives either good or bad?

We were told, right from the get-go by Clusterbusters to read, research the pros and cons of using alternatives, both medical and legal.  We did our research.  We thought long and hard about the ramifications of ingesting an illegal drug.  We are aware of the laws and made informed decisions on our own, individually, with no coercion from Clusterbusters or anyone else.  

Your comment above is insulting to us.  Please do as you said:

"Once the person does that , I most sincerely respect that decision."

Sandy

There's plenty of anecdotal evidence in this thread so far to suggest that this form of treatment works for many people and the most exciting part about it all is that, by some accounts at least, it may serve to actually break a cycle.

No mainstream medication or treatment holds out any such claim so this matter must be taken seriously and much, much further.

On the other side of the same coin, as Annette rightly points out, we are currently playing with fire because no-one has any idea about what down-sides there may be.

My greatest interest is to know whether CB works to stop the pain or, hope of hope and bliss beyond paradise, works to stop the cause of the pain.  

I remain annoyed at the tone of many of the posts here but urge everyone to remember that we must consider all options - just as much as we should respect other people's opinions, which may differ from our own.

AussieBrian wrote on Jun 10^th, 2008 at 9:28am:

no-one has any idea about what down-sides there may be.

Very true, Brian. Those of us that choose to report our progress, both to the doctors doing the research, and here in public are the beta testers. We report the good and the bad. Just like I (and many others) did with kudzu, Barry has done with taurine supplements, and even the new treatment of rhodiola.

All we can do is try it and see what happens.

The purpose of this thread was to get those of us for whom it worked to say so.  

AussieBrian wrote on Jun 10^th, 2008 at 9:28am:

On the other side of the same coin, as Annette rightly points out, we are currently playing with fire because no-one has any idea about what down-sides there may be.

Yes, Brian you're right. On the flip side, with the conventional meds it seems that this information flows through here quite freely. And most of this feedback is anecdotal as well. While the drug companies do publish some of this information, it is made that much clearer by the user stories here on the site.

And, it has also for some of the alternatives too. I remember the Kudzu threads had reported several users had some issues, while most others did not. The information was appreciated and not villified. I've also seen honest feedback from some testers where it has not been as effective as it has for those who have had miraculous results. Just like you see on threads for O2 and conventional meds.

So that's all to say, what a great place this is when it is working naturally. Attempts to push or control agenda's result in the annoyances you refer to.

Scott

To Michael / Wildhaus:

You have my respect - for who you are, and for not doing what you feel is ethically wrong.



Lizzie

seasonalboomer wrote on Jun 10^th, 2008 at 10:00am:

AussieBrian wrote on Jun 10th, 2008 at 9:28am: On the other side of the same coin, as Annette rightly points out, we are currently playing with fire because no-one has any idea about what down-sides there may be. Yes, Brian you're right. On the flip side, with the conventional meds it seems that this information flows through here quite freely. And most of this feedback is anecdotal as well. While the drug companies do publish some of this information, it is made that much clearer by the user stories here on the site. And, it has also for some of the alternatives too. I remember the Kudzu threads had reported several users had some issues, while most others did not. The information was appreciated and not villified. I've also seen honest feedback from some testers where it has not been as effective as it has for those who have had miraculous results. Just like you see on threads for O2 and conventional meds. So that's all to say, what a great place this is when it is working naturally. Attempts to push or control agenda's result in the annoyances you refer to. Scott

I'm sure that few people would disagree that with there are additional factors at play when one is considering the use of hallucinogens, vis a vis things like oxygen and kudzu.  Very good reasons, IMO, to move the conversation beyond anecdote.  If hallucinogenic substances really can do all that has been indicated, then it becomes urgent.  

If clinical trials can demonstrate that these treatments actually are safe and effective, then perhaps some version will eventually be available for physicians to freely prescribe to their patients.  Unless I'm mistaken, that is what most folks would like to see.

As I said before, I note that plans are underway to take the next step--clinical testing.  Excellent.  I await the results with interest.

We can stack anecdotal evidence miles high, but until there is some sort of vindication beyond the testimony of people who've tried hallucinogens and reported success (or the lack of it), nothing changes.  The problems remain, and the questions remain.  We'll still be here, hashing the same issues over and over again.  

It's time--and past time--to move forward.  I'm hopeful that this will occur.

Best wishes,

George  

Annette,
Of course, there is no limit to the amount one can post, but now that you metion it...

Discussions are encouraged.  Rambling on and on, off of topic, I believe is discouraged.

"It can be called " getting worked up " or it can be called " passionate ". People do talk at length about things they are passionate about. My passion is to find out as much information as I can on BOTH the efficacy AND the potential risks and problems."

It could also be called obsessive, compulsive or even fanatical, but your goals appear to be much more than what you are stating here.  Your accusations give you the appearance of having an alterior motive, and honestly, how can you expect anyone to want to help you find the answers you are looking for if you arre going to compare them with snake oil salesman.  

In regards to Dr. Sewell's letter, sure post the link...

"The people who have told me their stories dont wish to share their experience publically and I need to respect their wish. I recommend you spend time getting to know the people on this board , you will slowly get to know their stories."

And this, How can your argument have a leg to stand on if all you are willing to do is dangle a carrot on a string.  Nobody is asking for an identity, or even an exact account of the bad experience, just something credible.  I think your actions here really put your credibility into question.  If you are committed to keeping it secret then why mention them at all?

AussieBrian wrote on Jun 10^th, 2008 at 9:28am:

On the other side of the same coin, as Annette rightly points out, we are currently playing with fire because no-one has any idea about what down-sides there may be.

No, this is not true.
As I said earlier in this thread, there are REAMS of testing, clinical trials and research into the safety and safety concerns (downsides?) of LSD and psilocybin.
Reams I tell you.

Why everyone doesn't believe some guy on the internet that goes by the name of Pink Floyd, ehrn he speaks of psychedelics, I don't understand.  :)

I would have said, some "faceless" guy on the internet, but, some people have seen my face. Maybe thats why its difficult to believe someone that looks like ..........a movie star.

There are issues with everything we put into our bodies. From oxygen to sansert to depakote to psilocybin. I'm happy to discuss all of them, as long as all of them, as a subject, are treated with the same respect. I'll be happy to help people weigh the risks and benefits the best i can.

We can/will/should discuss the issues of safety, but, "safe" comes in a graduated scale. What is safe? Who says something is safe that can be trusted? Pinkfloyd? The FDA? Good question. If the issues aren't discussed properly, and respectfully, no one will benefit from the discussions.

The FDA said cox-2 inhibitors were safe. Millions of people took them. Now millions of people are suing over Vioxx.
All drugs that are approved by the FDA and other regulatory boards, carry with them a "level" of safety. Some are completely safe for most people. Others are "safe" for only a selected group of people.
Thalidomide, which was approved by the FDA and said to be "safe" caused major problems for many people, causing severe birth defects, among other nasty things. I know its an old story, but still a good example. thalidomide which CAN cause major defects, but is again available and used with a prescription. So......is it safe?


Carry on,
Bobw

Annette, what you read on the public part of the CB website is true. Dr. Halpern and others have been working towards a clinical trial for a LONG time now, and it looks like it may come through soon.

Although this is a subject where many have stood up to be counted, there are many more who haven't. This subject has come up many times on this board, and some  people it didn't help have posted that it didn't, for their various reasons.

I would think you would be glad that some of us have found a treatment that works. Now, before you say anything else about clinical trials, etc., you should be aware of some of the stuff some of us have tried to get this horrific, terrible, LIFE CHANGING pain to stop. And all without clinical trials. Just on the word of someone else who posted here, or on the guest book. Ever read the one about putting cat shit on your head? And what about the people who come on here stating what they've tried has cured them. How many people here do you think have tried those treatments. Probably many more than would admit.

Although I realize you want to be as informed as possible, I can't help but think your attitude sometimes is because you don't actually suffer from CH, and don't really understand the pain, because if you did, you would understand where we are coming from, treatment-wise.

Of course, everyone who is a member of the CB site has done their homework, and research into the various psychedelic treatments BEFORE they choose to partake of these treatments. They weigh the pros and cons, and make a decision.

Yes, we NEED clinical trials, and I do hope they start very soon, because this is a HUGE possibility for beneficial treatment for clusterheads. Instead of taking however many meds, spending money on meds that don't work, and not to mention the physical damage some of them do to our bodies. But, still we take them, and HOPE something better comes along.

You and Daniel have made your decision. Please respect the people here who have made their decisions.

I'm sure that when the trial has been finished, the results will be published. Hopefully, that will give you some more info about how it worked. But please, don't play policeman, or be a judge, trial and jury to the people who this has helped. Respect. Mutual respect.

Quote:

Maybe thats why its difficult to believe someone that looks like ..........a movie star.

Marty Feldman?

LMAO
Marty Feldman
Now that was funny.

Bob, meet Bob.
Bob, this is Bob.
Marty, this is....   ???

;)

Doug

Bob P wrote on Jun 10^th, 2008 at 7:12pm:

Quote: Maybe thats why its difficult to believe someone that looks like ..........a movie star. Marty Feldman?

I was thinking more along the likes of Gene Wilder, but taller. [smiley=happy.gif]

One thing folks on all sides of this issue need to bare in mind, is that for some people (probably many many of them) who have chosen this method of CH management, it wasn't an easy decision.  

For some, there was truely NO other viable option.  No insurance, traditional meds were breaking the bank and not working anyway.  For some, first line medications were contraindicated due to life threatening side effects, or life altering ones.  Access to the amounts of effective meds needed to treat their particular battle with the beast were highly limited.  Some had to depend on the kindness of others to suppliment their supplys of conventional meds.  Some had to rely on alternate formulas of first liners because the government programs that supplied the meds only covered certain formularies.  Good Luck getting Government funded O2 without the right "criteria" being met because you had no private insurance.

For many, the CB method was the last and only hope to possibly get their life and livelyhood back.  It was the difference between finding themselves homeless from loosing their jobs and having no income to getting promotions and furthering their careers.  

Some people risked the legal ramifications.  Why?  Because many of the same things they risked loosing were hanging in the balance anyway.  Careers, freedom, family, homes.  Either from legal action from trying the method, or from being disfunctional without trying it.

Many are single people wthout any support system at all without this family.  To lose a job is to lose everything.  There is no second income to fall back on.  They are on their own in all sence of the word.

Only when someone who is hellbent to stand in "rightious judgement" of the method has walked in the life path of those who have chosen this route to PF time, can they ever turely understand.  Only when they have had to live out of the backseat of their car in the cold of winter because they lost everything due to CH, can they "really" understand.  Till they have been faced with loosing the very essance of all they hold dear and worth living for, will they ever understand.

And untill they experience what a virtually PF life can be and is like after oh so many years of hell and misunderstanding and misdiagnosis and being brow-beaten into thinking you are a whimp, a drug seaker, a drama/attention w-hore, they will never fully and truely understand.

Interesting thread.

Perhaps I should stay off this thread because Blake has never used psychedelics and because Bob was merely asking for folk who have to be counted ...good and bad welcome.

Blake had his first cluster in 1989.  He has been in remisiion for 2 years now....but for the 15 years before that he was chronic with daily hits.....sometimes every hour on the hour.  We've done almost every thing imaginable trying for ANY relief.  He's taken dozens of different drugs....some damm near killed him.  A couple months before he went into remission we decided to detox off ALL medications with the exception of 02.  Then he was going to dose.  They stopped before we got to the dosing (Thank you Lord)

The DAY Blake goes out of remission I'll be on the phone begging a 'buster' to help me dose him!!!!!  

Annette....Daniel has had one or two cycles you say.  I'm wondering how you would feel watching him suffer day after day...year after year.  Maybe you would still be nagging about proof and data...who knows.  Maybe if you'd witnessed what I have you wouldn't hesitate....but again who knows.  You say you and Daniel made a conscience decision not to try the psychedelics.  I'm betting the decision might be different had you supported the idea.  ...again who knows.   I know this......I'd dose my husband with the shit some shrooms grow in if I thought it had the potential to ease his suffering.

For those who can't do so because of legal and moral issues I respect your choice.  The choice is as individual and the disease.

Bob....I thank you, from the bottom of my heart, for all the years you've dedicated yourself to the research and for the willingness to share that research with your fellow cluster sufferers.  I'm sure the difficulties have been many.

Most sincerely,
Jackie


modified 'cause I can't type.

Jackie wrote on Jun 10^th, 2008 at 8:55pm:

Bob....I thank you, from the bottom of my heart, for all the years you've dedicated yourself to the research and for the willingness to share that research with your fellow cluster sufferers.  I'm sure the difficulties have been many. Most sincerely, Jackie

Amen Jackie! And while the difficulties may have been many, so have the rewards, of seeing our brothers and sisters in this god forsaken pain, come out of it, and lead happy and healthy lives. Thank you Bob, for all that you do.

"Why everyone doesn't believe some guy on the internet that goes by the name of Pink Floyd, ehrn he speaks of psychedelics, I don't understand." :)

Keep doing what you do....please ;)

If CH affected say 20% of the population, you better believe all of us would be going to the local pharmacy to buy it because it would be approved.  Personally, I think most CH research should be focused on CB.  Yes, there are some meds that work and sometimes they work real well.  But I have found nothing else that gives me hope of a normal life.  

My question......what is Goadsby's view on CB.  I once read where he doesn't understand how it works and he questioned whether it was a placebo affect.  

Pinkfloyd wrote on Jun 8^th, 2008 at 5:32pm:

I will try to find more data for you. We will be conducting phase two trials. Phase one trials test the safety of a treatment. The safety work has been done.

Safety is a first factor.  Dr. Hofmann's first contact may have been accidental, and remembering also the precautions of handling from the 70's.

I once read here a remark about this being compared to something like controlling atomic energy, which had a bad reputation for different reasons.  Going back to work on radioactivity in the early days, safety was nonexistent but very important today.

Nobel laureate Ernest Rutherford observed upon meeting Pierre Curie that his hands were in a very inflamed and painful state due to exposure to radium rays.  Madame Curie said that if radiation could attack healthy skin in that way, it might be useful for attacking the unhealthy cells of cancer.  She died in '34 from its use.

Rutherford employed two young assistants, Hans Geiger and Ernest Marsden to test a theory of the atom's structure from accumulated knowledge while at McGill University of Montreal, furthered at U of Manchester in England.  
 Re-creating that experiment today, which originally used radon 222 and released 30 billion alpha particles per second, there are a lot of things you could no longer due because of safety concerns -- they would never be let in the building.  Back when, Rutherford would pocket the stuff and toss it in a drawer at home.  McGill U. has his $100,000.00 desk used at home, so-called because of the small fortune it cost to decontaminate.

 In a re-creation of the experiment, a decaying product of plutonium would now be used, americium 241 (produced: 1944, Seaborn, James, Morgan, Ghioso, U of Chicago) with 370 million particles per second.  A much weaker source of radiation that is used in almost microscopic amounts in common commercial smoke detectors.  

If small portions of radioactivity can be tailored to be employed, I might see where LSD could put to useful purposes for us.  But it is good to see the first step completed has been safety.  

Much later in life, Ernest Marsden wrote that modern safety restraints would have made the early scattering experiments "unworkably complicated."  Yet evidently important concerns voiced to hurdle here, too.  

I am a sufferer for the past 25 years the last 13 of them chronic after meeting for the first time a number of othere sufferers 3 years ago including some who 'bust' and others who didn't/don't I decided then to try it after a particularly treatment resistant high cycle
the effects were amazing to be frank!!!!
since then i have had both good times and bad using this form of treatment but the majority of my time is PF so i am a semi success i suppose according to statistics, I consider myself to be a succes because when i was treated with verap etc i would average 3-6 months unable to work and otherwise enjoy life ( if work is to be considered a pleasure lol) in the last 2 years i have taken 6 days off work !!!!! if ' busting'  hasnt made a difference i'm missing something
yes it is illegal,frowned upon etc i know that i will stick with it and can't thank Pinkfloyd ,Flash and all the others who have bought this treatment to my attention
ZANY

After reading this whole thread. I had to go back to the beginning before answsering. The bottom line, for me is, yes the alternate teartments help me very much. I have, what I consider, a lot of friends on both sides of this issue and some somewhere in between. I definately have several people to thank and Bob is very high on this list.

                                             Lee

has anyone ever been hit while dosing?
i think that could be catastrophic...

i know from my Grateful Dead days, my g/f freaking out because her balloon popped :D

i also know that if i ever turn chronic, i'd be busting out the black light and funky velvet glow in the dark posters.

icculus wrote on Jun 11^th, 2008 at 11:12pm:

has anyone ever been hit while dosing? i think that could be catastrophic...

This is a common fear of those that had used psychedelics recreationlly in the past. (Most people that end up trying this treatment, are using psychedelics for the first time)
The big difference here, besides not being at a Dead concert, is that these are NOT recreational doses that people are using. Normal dose for clusters is about 1/4th that of a recreational dose.


icculus wrote on Jun 11^th, 2008 at 11:12pm:

i know from my Grateful Dead days, my g/f freaking out because her balloon popped :D

I hope you bought her a new balloon!!  ;)

Bobw

Given my line of work and position in society, it's impossible I could even consider the CB method myself while there remains a hint of illegality about it (probably in strife for even reading this thread) but I've also waited a long time to see it discussed rationally and politely among grown-ups.

Long may the discussion continue and it's especially interesting to learn that the safety bit has already been carried out, but does anyone know how the stuff actually works?

What part of the body/nervous system/neural pathways it affects?  And why?

More information along these lines will be gladly accepted.

Hi Brian

The medicinal efficacy of entheogens in cluster headache still remains a bit of a mystery.  However, although the following hypotheses are based largely on conjecture, this may offer some insight and help generate some discussion and debate:

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-Lee

kevmd wrote on Jun 11^th, 2008 at 11:31am:

My question......what is Goadsby's view on CB.  I once read where he doesn't understand how it works and he questioned whether it was a placebo affect.

Quote:

Peter Goadsby, professor of neurology at the Institute of Neurology, University College London, and the world's leading expert on cluster headaches, is sceptical about the mushroom therapy. He argues that the relief reported by some patients may be a placebo effect or owing to natural remission. But he does believe the cases warrant a proper clinical study, particularly as ergotomine - which contains lysergic acid, a precursor of LSD - has been used to treat migraines for years. "It's possible that mushrooms have some useful effect but it's far from proven," Dr Goadsby says. "Cluster headaches are such a devastating problem that people will turn to anything that seems to work." Source: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

cluster wrote on Jun 12^th, 2008 at 5:03am:

kevmd wrote on Jun 11th, 2008 at 11:31am:   My question......what is Goadsby's view on CB.  I once read where he doesn't understand how it works and he questioned whether it was a placebo affect. Quote: Peter Goadsby, professor of neurology at the Institute of Neurology, University College London, and the world's leading expert on cluster headaches, is sceptical about the mushroom therapy. He argues that the relief reported by some patients may be a placebo effect or owing to natural remission. But he does believe the cases warrant a proper clinical study, particularly as ergotomine - which contains lysergic acid, a precursor of LSD - has been used to treat migraines for years. "It's possible that mushrooms have some useful effect but it's far from proven," Dr Goadsby says. "Cluster headaches are such a devastating problem that people will turn to anything that seems to work." Source: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Exactly how a scientist should answer. The mind is open to all possibilities.

AussieBrian wrote on Jun 12^th, 2008 at 2:38am:

...does anyone know how the stuff actually works? What part of the body/nervous system/neural pathways it affects?  And why? More information along these lines will be gladly accepted.

Hey Brian.  All good comments.  

I had to edit my previous post, things don't fall from my brain to the keyboard so viewable, I usually like to separate thought and writing, the latter can be painfully readable when trying both at the same time, and thought the spelling error in this particular thread between re-creation and recreation was a very bad one.  ::)

Here's an Aussie written article, can't attest to its accuracy about Dr. Hofmann's search for migraine therapy, but it's mentioned.


Quote:

...the result of a rather unorthodox experiment. Five years earlier, in a search for novel therapeutic agents to treat migraines, Hofmann had combined an ergot alkaloid, lysergic acid, with a diethylamine building block to create the 25th molecule in a series of lysergic acid compounds. Hofmann and his colleagues didn't have access to modern brain scanners; but PET (positron emission tomography) and MRI (magnetic resonance imaging) technology can now provide insight into how the brain responds to LSD. But to explain how LSD influences the mind, brain scanning has limitations, says Iain McGregor, director of the psychopharmacology laboratory at the University of Sydney. "You can put in radioactive LSD to give you a much better idea of distribution and binding sites in the brain -- indeed such data are available in animal studies," he says. "You could do a brain scan to confirm that the 5-HT2A receptor is the principal mode of operation of LSD. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

[/url]


And just googling "how it works", this guy has a slide on it also confirming the same receptor and a nice picture.  Certainly not my area of reading and don't know what it says, but nice picture.     :)

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AussieBrian wrote on Jun 12^th, 2008 at 2:38am:

Long may the discussion continue and it's especially interesting to learn that the safety bit has already been carried out, but does anyone know how the stuff actually works? What part of the body/nervous system/neural pathways it affects?  And why? More information along these lines will be gladly accepted.

The question is a big one. Many answers are speculative still.

I dont think science has advanced far enough to definately answer the question.

In the past much research has been done on the hallucinogenic issue and pshycological issues but really not much has been conducted regarding cluster headaches and the efficacy thereof with the CB treatments.
An awfull lot of work has been done by Cluster busters, citizen scientists and a few researchers legitamately on CH and CB but the true and total answers dont exist yet as to how the treatments work to abort and bypass cluster headaches.  I am pretty sure,
A lot of well researched speculation is and has happened but we are still miles away from answering the question totally as to what really happens with the mild CB doses that eliminate CH for many.

A very large amount of the medications we all use have this same question sitting there.
Verapamil, Lithium, sansert, tylenol etc. etc.. none know precisely why they work for some with CH and not for others.

I think that first the question of What causes CH(?) would have to be answered with complete confidence.
The combined research of CB medications that help many and research on CH itself may ultimately help to answer a lot.

My question how do we speed the reasearch process beyond where its at? Is it possible to answer the question.

A Goadsby article from 99 the uncertainty is there and incoclusive for CH research and its cause, though a lot of tremendous research has gone into it..
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icculus wrote on Jun 11^th, 2008 at 11:12pm:

has anyone ever been hit while dosing? i think that could be catastrophic...

Hello Icculus,

In answer to your question "Yes" I have been hit whilst dosing, & it's not a pleasant experience.

However, the thought is always at the back of my mind. I am doing this for a very good reason. To get rid of the Clusters, a small price to pay IMHO.
It's all about being in the right frame of mind, & in comfortable suroundings, with your 02 to hand.

As Bob has said, most sufferer's can abort a cycle with very low doses, & suffer very little side effects at all. Some sufferer's (myself included) need larger doses. Most Busters will suffer increased activity for several days after dosing, & sometimes longer. This is common, & to be expected.

I have now found that a mixture of RC's, & Psilocybin to be the most effective for me personally, but I would always suggest a low dose to begin with.

CArl...

I most certaily have used psylocybin. It is now illegal here. When I did use it it definitely had a good effect. It shortened one of my cycles. Unfortunately lets say for arguments sake I had to grow my own in another country where it is still legal. The crop was great but after being dried it lost it's potency. However it did stop shadows for about 4 months.

I believe the best way to use it is in a preventative way say doses every 3 to 4 months throughout the year.

This year however, my episode is quite severe and I am left with having to attempt growing again to try and counter next years episode.

I think it is very good for preventing CH BUT if you don't have it, or it does not work then 02, sumatriptan and veraparmil are good to have around.

I have had CH since I was a child but I don't remember getting them in the late 60s and early 70s and I think I know why. LSD and psylocybin.

It is definitely in my plan to use it again when I have a crop of reasonable potency.

Reccommended.

ET. xx

icculus wrote on Jun 11^th, 2008 at 11:12pm:

has anyone ever been hit while dosing? i think that could be catastrophic... i know from my Grateful Dead days, my g/f freaking out because her balloon popped :D i also know that if i ever turn chronic, i'd be busting out the black light and funky velvet glow in the dark posters.

I have tried the clusterbusters treatment. I was somewhat successful the first time. But as  a chronic, success is relative. For me everytime I dose with shrooms, it is a six hour ordeal. I kip 8 that lasts for the whole time.

Yet, I wouldn't trade it for anything as it provides me some relief. If I was episodic I wouldn't doubt treating the beast to some potent medicine.

Shrooms probably have the least amount of side effects than most conventional medicines. You would have to dose big quantities to have life altering effects. Even then you are probably bettere off having a life altering event.

If you suffer from mental illness to begin with you shouldn't go this way. Maybe Lithium is a better way to balance you.

The Shrooms work for me.  I've been Ep. since 97.  I only get 1 month long cycle per year, and I have busted it with shrooms the last 4 years.  I get nailed with kip 9s the day after dosing, but only mild shadows the following 3-4 days.  I need to use about a 1/8 ounce to bust.  Small amounts seem to only prolong the cycle for me, so I try to get it out of the way all at once.  I hate the tripping felling, but I hate the CHs more.  The hardest part for me, is finding the shrooms in the first place.  

As posted in a recent thread:

A very friendly person once helped me to try the CB method with mushrooms.  Previously all I had to rely on was imitrex, verapamil and Oxygen.  All of which have their limitations, side effects, and in the case of imitrex, high cost.  

The detox process to make sure the CB method worked was brutal because I was in a cycle.  I didn't want to doubt the effectiveness, though, so I followed it and had no verapamil or imitrex prior to, and during the CB process.

I took the 3 doses, 3 weeks apart as explained.  I can honestly say that it convinced me that I'd never want to take mushrooms to get high.  I didn't like the feeling at all, and it was only a small dose.  During these 3 weeks I continued to get headaches, but less & less.  After the last dose, I still got a couple of headaches, but bery minor ones, and then they went away... many weeks before they'd be expected to.  They stayed away for 10.5 months, which was also way longer than expected.  I had a completely PF spring & summer.

The beast has since come back, and because of my being scared to buy, and then not trust mushrooms, and my lack of desire to grow them or my likely inability to do it well, I can't repeat the success, so it's back to the meds for now.

It worked, though, and I was skeptical as anyone could possibly be.

As a side note, oxygen never worked as an abortive for me before. It would deaden the pain, but I'd get off the O23 and get hit harder.  My l;atest sycle post CB, allowed for me to use O2 ery successfully as an abortive instead of imitrex until my verapamil kicked in.  Now, I am regretting not having tried to procure or grow mushrooms, though, because I just dont want to be on Verapamil long term.  It has too many side effects... ask my toilet, my girlfriend and probably a slew of my internal organs.  

I brought all of this up to my doctor, and she basically told me to forget about it.  It wont be something that is looked at as a clinical alternative in the US, and as such she wont even talk about how it worked for me.

I wish there would be some action on this, though... what a safe, natural, amazing way to help so many people without all of the nasty side effects and costs, but I suppose that is the very reason it will be brushed under the carpet for generations to come.

I have not posted here for a long time, and had a tough time getting signed on. I did want to stand up and be counted, so I have spent some time getting here. I probably wouldn't have kept trying to post if I didn't feel it was so important to be counted. I am episodic and have had excellent results using Clusterbuster treatments.
That is such a weak statement. I don't know what words would discribe how I feel. But the bottom line is, for me to choose this path, was the best thing I did for my health. And I repeat, for me it was the smartest move I made in regards to CH.
I will be forever grateful to a guy named Flash, and the people that he led me to. If you read the Clusterbuster faqs, I think you will see his name.
I would also like to say, that it is hard to read any bad remarks directed at BobW. The work he has done and the way he shared his knowledge has helped so many of us. I don't know if we will ever know how many, but we might get a good estimate from this thread.
And you know, he didn't have to do it. He saw some hope and chose to share.
I am standing and I want to be counted.  Sophie/Stellablue/Leslie

How the heck is Flash?

I sure miss him.  We used to have some fun chats.

Tell him I say hi and hope all is well with him. ;)

Sophie wrote on Jun 18^th, 2008 at 12:45am:

I have not posted here for a long time, and had a tough time getting signed on. I did want to stand up and be counted, so I have spent some time getting here. I probably wouldn't have kept trying to post if I didn't feel it was so important to be counted. I am episodic and have had excellent results using Clusterbuster treatments. That is such a weak statement. I don't know what words would discribe how I feel. But the bottom line is, for me to choose this path, was the best thing I did for my health. And I repeat, for me it was the smartest move I made in regards to CH. I will be forever grateful to a guy named Flash, and the people that he led me to. If you read the Clusterbuster faqs, I think you will see his name. I would also like to say, that it is hard to read any bad remarks directed at BobW. The work he has done and the way he shared his knowledge has helped so many of us. I don't know if we will ever know how many, but we might get a good estimate from this thread. And you know, he didn't have to do it. He saw some hope and chose to share. I am standing and I want to be counted.  Sophie/Stellablue/Leslie

Hi Leslie!!!   :-*

BobW and the CB gang have a LOT to be proud of............but it's not pride, rather, it is publicly acknowledging what they have found to be true.
1-Truth- no 2 CH'ers are the same
2-Truth-there are many different prevents/controls/aborts available to CH'ers
3-TRUTH-RC seeds and pychos...arrrrggghh....that stuff.........have been proven to have a considerable amount of success with CH
4-TRue-each CH'er will have to work through the options to find what-and at what strength, might work for them.
5-TRUE-Bob etal are very PLEASED to have made THIS much advancement, but the'd like to do more.
6-True-EVERY SINGLE TIME A CH'ER FINDS SOMETHING TO MAKE THEIR LIFE MORE MANAGEABLE, THE WORLD SHOULD KNOW.
7-The CB group is as far from in-your-face, rude arrogance as anyone! they ARE, however, ready again to spread the word..........and get more feedback! Sure, they are passionate..THEY ARE SUFFERERS, TOO!  They're not asking you to buy their seeds, potions, etc.............they are asking success stories to stand up and be counted.........no offense intended to anyone there............
NOw, if you do not wish to participate in CB, you don't have to, but, like eveythings else that MIGHT be on the horizon for CH.......kep your eyes peeled........there might be something out there to help YOU, too!

Good on ya, CB Gang!
A supporter, not a sufferer,
Cathi

Hi Nani  :-*

                 Leslie

I am presently in a successful fight using shrooms at a sub-recreational dose  of .75 gm. After a month pain free last September, my CH had been active to varying degrees until I put a stop to it with 5 doses separated by one week each.  Through this Wednesday I was pf for two weeks, when I had one beer that set off a half hour kip 2 hit.  I immediately did another .75 gm. which seems to have put a stop to any possible resurgence.

I have been experimenting with shrooms for about five years now, trying to find the most successful regimen for me.  They have always  worked to some degree as an abortive, but I want to see preventive success, and I believe I may have found the correct dosing regimen.

COUNT ME

I only read the first post, I just want to stand up and be counted. Mushrooms saved me, I've only been diagnosed a year and half or so, but I've suffered for almost 1.5 decades, so being able to control it with psychadelics is incredible. Nothing else works, oxygen is the next best solution, and it leaves me hooked up to an oxygen tank 1/2 the day, spending an enormous amount of money on treatment - and I'm still in pain! Shrooms cost next to nothing, they WORK, and I'm incredibly thankful to people like bob and others that got this info out on the net so I could find it.

Damn, wrong thread, just count me again. :D
thebb ;D



bump :o

Darrell wrote on Jun 22^nd, 2008 at 10:43pm:

I am presently in a successful fight using shrooms at a sub-recreational dose  of .75 gm. After a month pain free last September, my CH had been active to varying degrees until I put a stop to it with 5 doses separated by one week each.  Through this Wednesday I was pf for two weeks, when I had one beer that set off a half hour kip 2 hit.  I immediately did another .75 gm. which seems to have put a stop to any possible resurgence. I have been experimenting with shrooms for about five years now, trying to find the most successful regimen for me.  They have always  worked to some degree as an abortive, but I want to see preventive success, and I believe I may have found the correct dosing regimen. COUNT ME

Hi Darrell!  :-*

As a primary chronic, efficacy with any drug is fleeting at best. I have been busting for 4-5 years now and though it hasn't been the "silver bullet", it has given me more relief than anything else I have tried.

I, for one was unable to detox completely. I am still to this day taking 480mg of verap daily, but still realize good efficacy from busting, whether it's with LSA, LSD or psilocybin. I have no doubt but that if I can ever completely detox from verap, that I would have much better results.

BobW, aside from being one of the most caring and selfless men I have ever met, is quite simply my hero. All of the CB's right down to the last person are what we call here in the South, "good people." I can't remember a single derogatory remark directed at anyone else on that board as long as I have been there.

Don't get me wrong, I'm not trying to talk anyone here into anything. As Sgt. Friday used to say, "Just the facts Maam."

Bobb

Hi Bobb!!!   :-*

Hi Nani!!   :-*

count me  in  ...
episodic, this works like turning off the switch.
Marijuana for medicinal purposes is legal & governmentally controlled & grown  ( here in Canada anyway)   I hope they look at this form of
treatment for 'us' again.

Count me!!!!!

Changed my life!!

I'll add more later but it's been exhausting reading this thread and it's past my bedtime.

Mitch

Hi Mitch!   :-*

HI Nani!

Count me again!!!!

It has been almost a month and no fullblown ch!!!  Nothing but a twinge every now and then.  This is the first time I have felt "normal" mentally and phsically in over 2 years.  :D  I almost forgot what that felt like.

Thank you, Thank you, Thank you!!!!

I LOVE MY RC SEEDS!!!

Beth

:), yes count me. altered with psilocybin, maintained with RC seeds. thanks to this, and the clusterbuster sites. andrew.

ozzy wrote on Jun 15^th, 2008 at 9:25pm:

If you suffer from mental illness to begin with you shouldn't go this way.

I'm seconding this one!

I happened to be one of the people who cannot take hallucinagins (sp?) due to mental illness (i.e. clinical depression, anxiety/panic disorder).  I did try and had some adverse effects.  If I remember correctly, sorry it was a few years ago, it enhanced my anxiety, brought on panic attacks along with an extremely upset tummy (lots of vomiting), but that could have been due to me soaking my RC seeds in wine. :-/  Anyway, my experience and medical records went to the study with Sewell.

BTW. it just ROCKS that the alternatives are helping so many people!!

I do definately support it myself.

:)mel

Hello to all fellow suffers out there, my name is Bill Roberts i live in Cleveland Ohio. Ever since i was in my mid 20s i would get these monster HA at night, they would last about 1 hour and wake me from a dead sleep only to have me on my knees 15minutes later crying in pain like a 10 year old boy. They would go away after a couple of months and stay gone for what seem like years, only to jump right back into my life and destroy me as a man. I could never stop thinking it was from the partying i did as a kid, so when the last blast of this shit wouldnt let me go and i thought that this was it, i desepratly reached out to find anything that could help me go on. Thats when i met bob, and he told me about clusterbusters.com and anwsered all my questions so i was not worried at all about trying this, because what the doc had planned for me was much worse. so i ordered RC seeds and followed some advice, and the next day when i woke up i just knew they were gone!! I can say with 1000% percent truthfull words that these seeds ended those headaches!! I now stand here today medicene free, i take nothing, not one perscription drug!!! Sure i got a rouge hit ONCE and my 02 tanks are covered in dust. So i just want to say to anyone hurtin from this god awful bullshit that this is something you must consider to end your battle with CH. Thank you again Bob for waking me up from the nightmare i was living for the past 20 years, I can never repay you for how your site has given me my life back but only by trying to help another suffer i feel like i have tried to give back. Count me.   Coach bill

I'm just a supporter but I truly doubt I need to suffer to be desperatly seeking solutions. At this time last year Lisa was sooo drugged with legal traditional meds.She had only had CH for one year (but all year without any break)  Her blood pressure, at it's worst was 60/10 and EKG's showed drugged induced long QT syndrome. She was getting hit up to 12 times a day. Her asthma was a mess from all of the O2.  Her allergist said "It's time to try anything, you've done all of the traditional meds and it's just not working." Her chart says herbal remedies for CH. Reading so many posts here of decades of seeking relief made allof us search and find. This wasn't going to dominate her life like it had so many here.

In case you wonder why Lisa's not posting, it's cause she's off having a life like any other 23 yr old, working , swimming, studying for her master, dating and socializing. None of this happened last year before shrooms.

Charlotte (who is so grateful to everyone at clusterbusters)

cash5542 wrote on Jun 26^th, 2008 at 10:37pm:

In case you wonder why Lisa's not posting, it's cause she's off having a life like any other 23 yr old, working , swimming, studying for her master, dating and socializing. None of this happened last year before shrooms.

I forgot to tell you that all dates must fill out a clusterbuster questionaire, and supply us with references, to make sure we approve of her dates. And don't be suprised if we all wait up until she gets home safe and sound.  :)

Just wanted to thank everyone for posting your stories and comments. It's one of the things that keep us all motivated to carry on.

Bobw

Pinkfloyd wrote on Jun 27^th, 2008 at 12:21am:

[quote author=4D4F5D461B1B1A1C2E0 link=1212882305/125#127 date=1214534221]It's one of the things that keep us all motivated to carry on. Bobw

It's your motivation that keeps us motivated Bob.  Success stories like Charlotte's.

Oh, & the PF times we share together... ;)

Your friend from across the pond.

CArl...

OK,  I just read every post on this thread and I am appalled by some of the comments.  The word illegal keeps coming up.  
Ethical and moral; that is your decision, but unless your slate is clean (and I only know of one) don't talk to me about illegal.  I would eat the crap rooms grow in if I thought it would stop one attack.
When I found this site over a year ago I WAS SUICIDAL from my pain, and guess what, that is illegal.  Drinking below the age of 21 is illegal, but how many of you did that?  
Want further testing ?  Ask damn near any person (except the ones bitching) below the age of 40 and they will tell you the results.  Ask the manager or the president of the company and if they are honest a lot of them will tell you.  They took it in a lot larger doses than it takes for a CH and guess what; they are still around, they still have a brain (maybe some managers don't) and they are not hooked.
My wife is a very religous, ethical, and moral person; to her there are no shades of grey; it is right or wrong, legal or illegal, but she is all for me using this form of treatment in an attempt to stop my suffering.
This stuff ain't new, sports fans; it has been around for centuries, and thousands of mostly young people are trying it every day.  Hell, they get to see the pink elephants and we don't.  They do it for recreation and we do it for survival.  
Talk about research, If you think I haven't done my homework you can think again. I am 60 years old, retired owner of a very successful business, and don't have time or patience for nonsense.
You get off your soap box and I will get off of mine.  Remember what this website was designed for; A SUPPORT GROUP FOR CLUSTER HEADACHE SUFFERERS. No matter what I do or what I try if you are a true supporter then you will support my efforts.  If not, then I am on the wrong website, and I will keep searching.
I thank God for those that called me after my first post or I would not be writing this today.  Now that is what this whole thing is about; HELPING OTHERS!
Now go ahead and tear this post apart since you evidently have never been in my shoes.

I just got one thing to say to you, Eddie...

GO RAZORBACKS!!!!!!!!!!!!!!!!! :) :) :) :) :) :) :)

Oh...and see you all soon...can't wait!  :-*

Love to you both...
Jackie

Eddie - "Unethical" and "immoral" are grey areas. "Illegal," by comparison, is not. "Illegal" is merely a statement of fact. A moral or ethical act may still present issues with the law, and unethical or immoral acts may be perfectly legal.

It is illegal to posess or ingest psilocybin, period. It is perfectly legal to posess or grow morning glories, but it is illegal to ingest the seeds. One cannot even obtain a legal prescription for either of these in the US. Some people will not risk losing their careers, homes, etc. by taking the chance. That's all.

And I didn't have to climb up on a soapbox to say that.

When I first opened this post I did it for one reason; to get information to help me make decisions concerning MY CONDITION.
From what I read the intent was this (1st thread):

I think it's time for everyone else that has found help with psychedelics, to let everyone here know about it. Maybe it'll help to keep a thread on page one for a while so new people can read about this option. For those that can't step forward, for any reason, that's fine. I understand. For those that can, and have in the past, please stand up and be counted.
Bobw
P.S. Yes, the 20% that haven't been helped are more than welcome to let us know. (except BobP because he just didn't do it right)

What he asked for was facts on people taking this alternative, NOT COMMENTS.
DID IT WORK: YES: How did it work?
DID IT WORK: NO: Any reason you can think of why not?
I have made my decision, and I don't need or want anyone telling me how wrong or unethical I am; I do not question or disagree with their decisions either. What I am saying is this is not the place to make them: I AM LOOKING FOR FACTS--NOT COMMENTS; ANSWERS--NOT ISSUES!
I hope everyone will keep their post to the topic requested so others can make THEIR DECISION. Anyone that has made it this far does not need to be told "I'ts illegal or immoral"or whatever else someone has a problem with-------They already know that.

Eddie - Perhaps you're missing my point. It is simply this: for some, the fact that it is illegal is reason enough not to do it. I don't have a problem with anyone else utilizing this method. I find it neither unethical nor immoral. In my mind it is not wrong. It is simply illegal.

Yes, everyone can choose. But then everyone must be prepared to deal with the consequences. Plain and simple. In my case, I am not prepared to deal with the potential legal problems this course of action might send my way. Others are. More power to them and to you.

Do I wish it wasn't a felony? You bet I do. In the meantime, I get by with what's available to me legally. I cast no aspersions, and I do not judge those who take the risk.

One other thing - I would like to see one thread - just one - in the history of ch.com that contains only facts and no comments. I don't think there is such an animal.

I just wantede to say that after 12+yrs of ch I went through the gamut of meds till i found dopamax was great for 5-6yrs the last yr bam.....no longer worked... dosed with psilo and it worked for me have been dosing every 3-4 months since and missed my spring cycle....we will see if it keeps working...those of us who get relief from cb should lobby so we are not felons maybe in 20+yrs we can get them...look at cannabis and MS patients....PFDAN        Chris

I agree with Eddie - If it works, who gives a crap if it is legal or not.

The legality is an issue, like it or not but I have had several doctors tell me this just isn't something that courts want to waste their time on. Discretion seems to be the key. The risk is so minimal compared to the benefits and relief provided. Can anyone think of a case where someone was arrested and prosecuted??

Charlotte

Well Bob.. I'm sure you knew that this thread would veer off course, just the mention of this topic is fodder for debate/controversy.

However, I think its wonderful that there are so many finding relief, and are able to use this method of treatment for getting back their lives, and their sanity.  

Keep on truckin'! (even though that saying is really way before my time) [smiley=cool.gif]

Pepp

cash5542 wrote on Jun 27^th, 2008 at 12:50pm:

The legality is an issue, like it or not but I have had several doctors tell me this just isn't something that courts want to waste their time on. Discretion seems to be the key. The risk is so minimal compared to the benefits and relief provided. Can anyone think of a case where someone was arrested and prosecuted?? Charlotte

There are people, like myself, who work for companies that are regulated by the FAA and DOT. A person might be innocent until proven guilty in a court of law, but in the court of a Director's or VP's office, the rules are a little different.

JimL - That's who cares if it's legal or not.

I would also like to add that tryptamines are NOT commonly tested for in a  workplace drug screen they generally test for opiates methamphetamine cannabis cocaine and PCP......It costs more to test for other drugs and god forbid if it cuts into the bottom line....or maybe they can use some sub standard test from china.....but either way if it works for you legality is not an issue....PFDAN

All fine and dandy. If you're willing to take that risk, it's fine by me. I'm not ready to throw a 20-year career down the toilet on the chance that they're not testing for it. I've got others who are dependent on my income.

I'm not sure why the legal issue is meeting with such resistance here. I acknowledge that it's not an issue for others. To them I say "go for it." Why can't others acknowledge that it's a valid issue for me?

wrote on Jun 27^th, 2008 at 5:51pm:

All fine and dandy. If you're willing to take that risk, it's fine by me. I'm not ready to throw a 20-year career down the toilet on the chance that they're not testing for it. I've got others who are dependent on my income. I'm not sure why the legal issue is meeting with such resistance here. I acknowledge that it's not an issue for others. To them I say "go for it." Why can't others acknowledge that it's a valid issue for me?

I completely understand and respect your reasons for not taking the alternative route.  

Beth

Thank you, Beth.

Brew, i also understand your thoughts, and im the sole income for my family as well. I work for a place that is a clean and drug free workplace, you can be tested at any time. In my 10 years there i have been tested 2 times, but not since i have tried the RC seed method, but like we both said were the sole income, and during my last battle with ch i had to revert to the family medicial leave act to save my job because of missed work time, and that put a big damper on my familys income, frankly it hurt us bad. Since ive been doing regular doses now i have not missed a single day of work since. but for me it was no chioce, eithier be fired for a drug test i belive wont even show it, or just lose it because im unable to keep a job while im in cycle like i was. thanks for reading. coach bill

Glad it's working out for you, coach.

OK gang,  after fighting the demon almost hourly for the past three weeks I took my 1st  "dose" at 2 PM.  Nothing, not even a twinge did I feel, but guess what;  IT HAS BEEN 9 HOURS AND NO HEADACHE!!!!!!!!
I'm hitting the shower and crawling into my own bed for the 1st time in three weeks.  I pray that when morning comes I will wake from my first nights sleep in a long, long time.
I will keep you posted

glad to hear of the PF time eddy but you will have to follow up in 5 days, keep us posted. coach bill

Got an e-mail.  I didn't mean 3 weeks without a shower. I guess I worded that sentence wrong!!!!!!
Having a few hits, but found out some other medicines I take may have had a effect on this.
Tapering off of them.
Had one great nights sleep with no hits; it was wonderful!

wrote on Jun 27^th, 2008 at 5:51pm:

All fine and dandy. If you're willing to take that risk, it's fine by me. I'm not ready to throw a 20-year career down the toilet on the chance that they're not testing for it. I've got others who are dependent on my income. I'm not sure why the legal issue is meeting with such resistance here. I acknowledge that it's not an issue for others. To them I say "go for it." Why can't others acknowledge that it's a valid issue for me?

Brew, I completely respect your decision and understand that is a very valid issue for you, and for many others.  

Making this sort of decision should never be taken lightly and should be researched and thought out thoroughly by everyone contemplating using CB methods.  

If their decision is not to try it, no matter what the reason, I respect that decision.  

Sandy

I respect your decision as well Brew. Then you have a pharmaceutical that works for you? It is a quality of life issue as well. When you have exhausted all other practical means and you begin to think surgery. When your whole life is upside down with pain and fatigue, you have no quality of life, and nothing is working. When you have used all your resources, lost your job, home life is non-existent nothing in the future but pain and misery. Then the thinking about legality becomes less of an issue and alternatives become a treatment not an illegal drug.
If one simply changes the situational criteria the perception of a substance can change as well. This would not change the public perception however.
all the best
thebb

wrote on Jul 1^st, 2008 at 12:58pm:

I respect your decision as well Brew. Then you have a pharmaceutical that works for you? It is a quality of life issue as well. When you have exhausted all other practical means and you begin to think surgery. When your whole life is upside down with pain and fatigue, you have no quality of life, and nothing is working. When you have used all your resources, lost your job, home life is non-existent nothing in the future but pain and misery. Then the thinking about legality becomes less of an issue and alternatives become a treatment not an illegal drug. If one simply changes the situational criteria the perception of a substance can change as well. This would not change the public perception however. all the best thebb

Preachin' to the choir, dude. I've acknowledged that.

I've several pharmaceuticals that work - it's a constant guessing game as to what will work today and what won't tomorrow, but they work the vast majority of the time.

If I lost my job, you're absolutely correct - legality would be much less of an issue.

It is a quality of life issue as well. When you have exhausted all other practical means and you begin to think surgery. When your whole life is upside down with pain and fatigue, you have no quality of life, and nothing is working. When you have used all your resources, lost your job, home life is non-existent nothing in the future but pain and misery. Then the thinking about legality becomes less of an issue and alternatives become a treatment not an illegal drug.


You just described Lisa last summer BB! And that's what made the choice a no brainer. Your comment was well put!

Charlotte

Sorry I didn't do the quote correct. I'm still figuring that tool out and amaze myslf when I get it right.

Brew, I understand your position and respect it.  I also feel sorry for anyone who avoids this treatment for fear of the law.  That is a sin, and governments should be ashamed.  I might add that I'm a firefighter subject to random drug tests, but don't let that stop me.  Psilocybin screening is not routinely included in drug tests.  As has been mentioned, it's a matter of cost.  Also, psilocybin is water soluble and therefore out of your system relatively quickly, unlike cannabis.  Three days would be a maximum, and you may be clean in one.

Anyway, I came here to add emphasis to my "count me"
Here's an update:

Well that was a good month.

Here's the breakdown:
     Eight total hits for the month
           Three induced by beer
           Only needed to resort to O2 for the first three of the month
           None worse than a 2
     Three .75 gm. doses

That's it, all of it, period.  Not bad after eight months of pretty steady hits.  Although May wasn't too bad, as I was starting to get my dosing right.  Last dose was June 25, and I plan on a maintenance dose in another one or two weeks.  Unless I get any activity, in which case I will strike immediately.


Darrell

I am grateful for the information I have had from PinkFloyd and pink sharkMark and the other Clusterbusters.

I have no desire to trip recreationaly. The supersalts, the verapamil and the steroids all work short term but ravage my body and mind. I cycle like an atomic clock in the Spring and the winter. 3 or 4 years ago I was able ( after much explaining and haranging) to obtain a good ounce of fairly fresh cubensis mushrooms. I tried to wean off all medice- to detox - did the best I could - followed the instructions and took a fairly heroic dose of shroms. Waited five days dosed again. That night the headaches, which are always left sided, began to change - I had a kip 9 that seemed to spin around my head, Next day and for everyday for a year after each dose I have been completely PF. Completely !

As an attorney- I recognise the dire need for good drug laws and I also recognise how completrely and utterly the law enforcement comunity could care less about our medical use.  

For me the biggest problem with the illegality of shrooms is that it makes thm so hard to find. The kids don't want to give their shrooms to a 60 year old man!!

Finally I have never experienced anything from another cluster head but a desire to help. This is a very small and special comunity - really - who can understand what we go through. " Oh - you have headaches, too bad"  If they could see us in the dance - hear us crying out - pouring ice water writhing and moaning maybe then. But - here - no one especially the dedicated leaders at CB - want to do anything but to help you overcome this condition.  I am a practising attorney licensed in the United States Court of Appeals - 60 yeard old. On this board and the old one for ever end ever.  Suport this movement and these people. This is an organic and gentle solution to this massive and debilitating condition. I stand up to be counted.

Tom Swift, Esq
New Bedford MA

I am back on this thread, I have been over this thread many times, I am also grateful to
a prominent member of CB (I will not mention the name, I simply failed to ask for promotion)
for the vast information and of f board interesting and educating discussions, tks so much,
how much one can learn and absorb information if one is open and interested in learning and
educating one self, if not for the purpose of use, then purely out of curiosity………

Every blade of grass has its angel that bends over it and whispers, 'Grow, grow.' (learne, learne)”
(The Talmud)

What is even more important and so much delighting is the fact that there is hardly any
“foul” answers or posts, and with such an “explosive” material, and contravention to keep
the discussion clan of “mud wrestling” is a proof that it can be done and it is done.

I am very happy for all the ones that posted about their success,
what can be better then a treatment that works! and apparently so good…..
Like a pain therapist said: “ even one day of pain free is the world” so much more if it
works for a long time, that is the universe…..  it is a blessing, I was searching for words
to express my joy, and I cant say I can find the words……..

I am also very happy to learn that O2 is a very important part of this alternative, as a big advocate
of the O2 therapy….. I can only say, a very good choice! I believe O2 is a saviour (for me) and a non
lethal therapy alternative.

I feel (in a way) I am being denied a good alternative for treating CH, by the authorities, but the law
is the law, and based on the law I can not take any marked illegal substances, I like my job!
and I try very hard to obey the law, I believe in federal democracy, I voted for it, I try to support it,
and therefore obey the laws put up by the system, and cannot knowingly and deliberately brake the law,
even so I know I am the looser at the end of the day, I just cant do it…….


Fish die when they are out of water, and people die without law and order ( the Talmud)

Michael

wildhaus wrote on Jul 4^th, 2008 at 4:39pm:

Fish die when they are out of water, and people die without law and order ( the Talmud) Michael

Hello Michael,

"The people shall not be deprived or abridged of their right to speak, or to publish their sentiments; and the freedom of the press, as one of the great bulwarks of liberty, shall be inviolable."
[James Madison]


"It is the mark of an educated man to be able to entertain a thought without accepting it."
[Aristotle]

"It is not our task to secure the triumph of truth, but merely to fight on its behalf."
[Pascal]

"A person who seeks help for a friend, while needy himself, will be answered first"
[The Talmud]

"Who can protest an injustice but does not is an accomplice to the act"
[The Talmud]

"Good government is the most dangerous government, because it deprives people of the need to look after themselves"
[Gandhi, M.]

"There is a higher court than courts of justice and that is the court of conscience. It supercedes all other courts."
[Gandhi, M.]

;)

BobW
P.S. Hi Tom, nice to see you again. Thanks for stopping in.

The good of the people is the greatest law.
            Marcus T. Cicero c. 106-43 BC, Great Roman Orator, Politician

Bring me four fried chickens and a Coke.
                                           Jake Blues

Quote:

Bring me four fried chickens and a Coke.                                            Jake Blues

Point taken  ;D

mattscott wrote on Jul 4^th, 2008 at 9:48pm:

Quote: Bring me four fried chickens and a Coke.                                            Jake Blues Point taken  ;D

No point intended. I thought we were just throwing out famous quotes.

Hold the cheese!

Having exhausted all assistance given to me by the medical profession, 4 Neuros, one pain manegment physician, Depakote, anti dipressents, dopeymax, and assorted other 'medicines'  suffering liver scarring and damage from them.
I reached out to others on this board, through them I found the person who was there for me, he  helped me to return to normalcy.
I'm not here to debate the 'legality' of mushrooms, I took 5 doses before I found complete relief with minor brief episodes of head pain, these are very very infrequent.  
The last dose was taken January 5th 2007.  
I find it ludicrous that this marvelous way to relieve some of us from disabling pain is 'illegal' when so many of the drugs given to sufferers of CH will make you 'dopey' 'groggy' and cause liver damage, not to mention a few other problems caused by them.  You can be sure should I begin to suffer as I was I will be taking the mushrooms.

I'd like to throw my name into the hat. I started with shrooms, had good success at aborting the cycle and also preventative dosing. I personally found shrooms hard to come by and to be honest didn't like having to get a little buzzed on a semi-regular basis with the shrooms.

SO... I looked for an alternative, RC Seed worked very well for me, I am episodic typically 2 times year lasting about 6 weeks per episode. RC seeds have allowed me to often skip the episode completely, i.e last episode was August 07, typically  I should have had an full blow episode Xmas time-ish but sailed on through. Last night i did feel a bit of that familiar tinge and will be dosing with 20 RC seed tonight (unless somebody recommends a different dosage) which will hopefully stop this cycle before it begins.

One added note, last Aug when i had my last episode, the seeds were unable to break it completely, but knocked it down to about 3 weeks with 1 maybe 2 CHs/ day, normally i would have been 5-7 easily, high on the KIP. ( i was also only dosing at about 9-10 seeds, which i think was too low)

I am a HUGE supporter of the work that is being done here, eternal gratitude to PinkFloyd, I really cannot express enough my thanks to those who have worked so hard to look for answers.

I would encourage EVERYONE to try the seeds. I know there are legality issues with some of the psychedelics, but in Canada anyway the RC seeds are available at a retail store, so it is not an issue and for me more effective than the mushrooms.

Good luck to all.

dave

You want a famous quote?  Try this quote on for size. "Dad does this mean im gonna get those things too?" (Sam R.) Daughter of a cluster headache suffer. Try hearing those words everyday from your 15 y/o daughter. I HAVE NO MORALS LEFT, THE BEAST HAS STOLEN THEM FROM ME.

coach_bill wrote on Jul 8^th, 2008 at 6:28pm:

I HAVE NO MORALS LEFT, THE BEAST HAS STOLEN THEM FROM ME.

I thought the idea here was to kick the beast's a$$, not the other way around. And I thought you had a leg up on it, if I recall correctly.

I do. and I do. What i should have said was when i was in my cycle....

Atta boy, coach!

Man O man! :D

LOL... I love you guys...  8-)

wildhaus wrote on Jul 4^th, 2008 at 4:39pm:

I try very hard to obey the law, I believe in federal democracy, I voted for it, I try to support it, and therefore obey the laws put up by the system, and cannot knowingly and deliberately brake the law, even so I know I am the looser at the end of the day, I just cant do it……. ( the Talmud) Michael

Hello Michael,

Fellow sufferer's not wanting to break the law was a point which was put to me many times when ever this topic was raised over here in the UK.
Many who argued this point were on high doses of conventional Meds...Most of them knowingly drove to work each day under the influence of drugs, & broke the law.
Over here in the UK it's illegal to drive a motor car whilst under the influence of drugs...

 [color=#666666]Penalties faced by drug drivers
If a person is proven to be unfit to drive through the use of drugs (illicit and prescribed) they face the same penalties as those who drive under the influence of alcohol. [/color]

Not sure what the law is over there in the States with regards to this...Maybe those of you who are concerned with breaking the law might wanna check it out...

Now as someone who uses Psilocybin, & LSA to control my Cluster headache. I am fit to drive a motor car 7 days after dosing.


Have a good weekend, & drive safely...

CArl...

wildhaus wrote on Jun 8^th, 2008 at 5:45am:

Hi I am very offended by what you posted, what you posted is rude and  degrading, and in many ways claiming you and only you have the “miraculous” answer to our common malady! This is not only unacceptable, it is beyond any  proper behaviour with any group with a common interest! You might possess some knowledge, you might possess a possible answer, but you cannot imply that the only ones using the “CB” way are the ones that have seen the light, this reminds me of a different kind of fundamentalism… The research (or being part of a research group) some of us, (hopefully for all of us) do, is to find an answer, an answer we all (most of us) can share. I did point out more than once that the “CB” way could (and seems to be) a good way to reduce and even eliminate our pains, and not only once I have pointed it out in my country and in other places, the potential of using “CB”, with some good reasaults, interest, and curiosity. but  IT IS ILLEGAL!!!! and therefore it is out of the question for some of us, whether for  ideological reasons or simply for practical reasons. I cannot use the “CB” ways!!  I like my job, I need my job!  and I have the age where losing my job will jeopardize my future, as well as all what is dear to me. And this thought, or better said alternative, is worse than having  “CH”!!!! I am invited to a Pain and Anaesthesiology Meeting in Switzerland, and I was going to talk about CH and also about the “CB” alternative, as a very good alternative (if legalized), but now after reading your last posting I have the distinct feeling that I will drop the CB part, and most likely not attend the meeting, posts like this turn me off, to try and promote our cause, it makes me rethink my commitment to the CH world, and its needs YOUR WAY (even so it might be a good way)  IS NOT THE ONLY WAY!!!! Michael

i really don't understand what is so offensive about clusterbusting nor do i understand why it is such a taboo subject. you guys go through all these trial and tribulations with there meds and their doctors. clusterbusting is a one time treatment and it works.

this is a site to help people deal with cluster headaches. thats why bob makes his posts hear. he is a clusterhead like all the rest of us.

also lets not forget that all these trusted drug companies (how much does imitrex cost?)are the ones that lobby to keep it illegal. they need to make sure that you keep buying their drugs and keep that money rolling in. NOBODY makes any money from clusterbusting.

as far as drug testing goes i am a truckdriver. i get drug tested quit often. the only way you can detect lsd is through a spinal tap. mushrooms and other methods are out of your system in days.   i too need my job but it's not like i can slide out from my desk and  go hide somewhere. i have to find a place to park my truck and try to put my head back together before i run somebody over. last cycle i didn't have insurance. because  of this and because i refused to drive due to safety reasons i clusterbusted. a few weeks later i was pf and back on the road supporting my family.

clusterbusting does have a place on this site and i don't understand why  it's so hush hush. if you gave me a choice between breaking the law and getting stabbed in the face repeatedly i'll break the law everytime!

as far as morality goes, what moral about charging you $150 for imitrex when it's just an immediate and non lasting remedy.

whats so immoral about using lsd or mushrooms to take care of an ailment? seriously can anybody answer that question?
with all due respect don't knock it until you've tried it!                    

Took the words right out of my mouth Johnny.
Can I get an Amen
thebb :)

amen brother!

i try not not push clusterbusting on anybody, but i with rise to its defense!

Amen.

I do not feel that anyone is pushing the choice of using CB treatment for CH. I believe it is important to share the knowledge of what has helped me, and others. I would not feel right by sitting back and not offering the information. In fact it would be a crime not to share. Sometimes we have to bend a law, written by man. And as long as we aren't hurting anyone and we are in our own place, I really don't think there is any harm.
Chosing a natural, ageless medicine vs obeying a 20 year old law, is a very simple choice for me to make.
But this thread isn't about that. It is about being counted and I have already been counted, unless you want to count me twice---but that might be illegal.

             Sophie/aka StellaBlue
                                        but my friends call me Leslie

Michael cleared that up, way back.  He misunderstood and thought the post was saying cluster busting was the only way.  

Charlotte

Oh well, in that case---nevermind.
                                                   Sophie

Everyone has there opinions and I respect them all but heres mine . Legality .....Fu#k Legality . It should be illegal to stand by and watch people beat there heads , pull out chunks of hair,Pray for death and witholding a cure or treatment . I have watched my wife go through this bullshit for 25 years . I cant wait to try the shrooms on her in hopes of some alternative to the fuc#in pain. If a dentist pulled your tooth with no novacaine would that be legal? If a doctor amputated your leg with no anestetics would that be legal. Morality ? Let me see ...We sell porn in every liquor store in america, We have convicted child molesters with more rights than we have living in our neighborhoods , We sell alcohol til people are 6 ft under, you can pay for sex legally, should I continue? We are trying to comfort someone in the most painful condition you can imagine , were not trying to get high.Stand up for what you believe in ! I believe my wife deserves to be treated with any means that will help her condition. The government spends to much time wondering whats legal or moral or injust instead of what is obvious. I would love for george bush to come spend a week caring for my wife by the same rules I have to . Deal with the insurance companies that take my premium every month but withold meds. Talk til your blue in the face to doctors, Try to live the american dream on 1 income because clusters arent a disability. In respects to this condition the government can kiss my big white ass!!! They can lock me up for caring for my wife ! Ok thats my vent now heres an idea for those worried about the testing process. We have a large enough group to have a volunteer to dose and go take a drug test in 24 hours and then in 48hrs and see what the results are, I understand how some are concerned because I get random tested every year. There has to be someone that isnt working or own there own business that can test . Those that are willing could chip in to pay for the testing . I believe the test is around $300.00  . We only need 20 supporters x 15.00 . Hell I spend that much on red bull for my wife every week.. If we could confirm that the test is negative after 24-48 hours ... 2 vacation days or a weekend and you could try it if you desired without fear of a negative test. Its a thought !  Information is power my brother and sisters. Thats all I got !  

I've got to say that RC seeds have saved my life - whether that's a good or bad thing is debatable, but I'm happy to stand up and be counted. I'm by no means cured, but my CHs attacks are all MUCH shorter, less frequent, and MUCH less severe.

I must add that I've never taken any other kind of medication for CHs because I was misdiagnosed for years. By the time I found out about CHs, the wonderful PinkFs of this world had already discovered the benefits of RC and I immediately jumped on board - so I've nothing to compare things to.

Anyway, even if it's illegal and the 75-80% of us get jailed, at least it's easy (...or so I've been led to believe) to get drugs on the inside. In my opinion, even life behind bars with RC seeds is preferable to a life of hell on the outside.

It's a pity that this site's on-line survey started before we (or most of us?) knew about the ClusterBusters options, otherwise we'd have better statistics, and could be closer to defining dosage, frequency, etc.

Best regards and pf days,
RT

Kate is a UK sufferer. I first met her several years ago now in the OUCH (UK) chat room.
She was at her wits end with pain.
She had never taken drugs recreationally, & was a little apprehensive to say the least.

With her permission, here's her latest update.

CArl....



Hello Everyone, its been quite a while since I've posted. I suppose
I didn't want to jinx anything. After turning chronic for a year I
successfully became painfree thanks to a mixture of LSD, shrooms and
seeds. I assumed that I had returned to my episodic status and was
ecstatic. This was all two years and eight months ago!
I did have a freak year once and went two years and six months, but my
cycle was always every two years without fail.
Luckily for me I always get a couple of 'warning' attacks....mild and
short lasting. These showed up in February and I immediately dosed with
shrooms. I did this again five days later following up with a dose of
seeds. My cycle was stoped in its tracks and I've been completely
painfree ever since. All my usual triggers such as flying ect. haven't
produced even a mild headache. After twenty six years I'm not living in
fear of the next cycle.
Starting down this road and detoxing was the hardest thing I ever did
but SO worth it in the end. I certainly couldn't of done it without the
help and support I received from fellow clusterbusters for which I will
always be grateful.
Good luck to anybody starting on this course. Kate x

Have any controlled scientific studies been conducted on the effects of hallucinogenics upon cluster headaches?  What I have been reading are anecdotal reports, which are not scientifically valid.  I have read that your Harvard University has for a number of years been proposing a scientific study of hallucinogenics and their usefulness in ameliorating the pain of cluster headaches, but thus far no such experiment has been approved.  If anyone has the answer please let me know the status of the experiment.  Thank you.
Sandra

Last I heard they were working on protocols for clinial trials.
John Halpern MD Mclean/Harvard.
all the best
thebb ;)
Anecdotal works for me. Nothing experimental about it. My opinion.

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Read for yourself

Thank you for giving me the citation to read.  Unfortunately, it appears to be more anecdotal evidence.  Has a formal research proticol been written and submitted for approval yet?  This is what I am most interested in; if you could send me a copy of that I would appreciate it very much.  Thanks you.
Sandra

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Read this my German friend.
It will be anecdotal until the actual case study begins.....we have to start somewhere. The initial case study done seems hardly anecdotal to me. But that just me.
all the best
thebb

From the Spring 2008 Clusterbusters Report:

We have an ambitious timeline for 2008. We plan to present the protocols to the hospital IRBs
sometime in the Spring. The IRBs are likely to require modifications. If these adjustments are not
too complicated, we could gain approval within a few months (no guarantees, though), and then
we send the protocols to the FDA, which has a required 30-day turn-around for response. Other
issues before starting include: sourcing our test compounds, securing our Schedule I Registrations
for this research from DEA, and, quite importantly, raising the rest of the funds necessary for
completing this research. Thank you for the donation of $26,000 to my laboratory: these funds
were critical to preserve my position and ability to push forward with this research. If all goes
according to plan now, the next donations will be for doing these important first clinical studies
for CH patients with psilocybin and lysergic acid diethylamide. Please help find donors for this
Clusterbusters' sponsored research! This ambitious 2008 timeline achieved will be a special
celebration for the Third Annual Meeting of Clusterbusters and will fulfill some of the promise of
hope we all are trying to bring to Ch'ers out there everywhere.
~John Halpern MD

nani wrote on Jul 17^th, 2008 at 1:19pm:

From the Spring 2008 Clusterbusters Report: We have an ambitious timeline for 2008. We plan to present the protocols to the hospital IRBs sometime in the Spring. The IRBs are likely to require modifications. If these adjustments are not too complicated, we could gain approval within a few months (no guarantees, though), and then we send the protocols to the FDA, which has a required 30-day turn-around for response. Other issues before starting include: sourcing our test compounds, securing our Schedule I Registrations for this research from DEA, and, quite importantly, raising the rest of the funds necessary for completing this research. Thank you for the donation of $26,000 to my laboratory: these funds were critical to preserve my position and ability to push forward with this research. If all goes according to plan now, the next donations will be for doing these important first clinical studies for CH patients with psilocybin and lysergic acid diethylamide. Please help find donors for this Clusterbusters' sponsored research! This ambitious 2008 timeline achieved will be a special celebration for the Third Annual Meeting of Clusterbusters and will fulfill some of the promise of hope we all are trying to bring to Ch'ers out there everywhere. ~John Halpern MD

And it is via this avenue that hallucinogens will eventually become legal in the treatment of CH, at which time I will be first in line.

I hope it happens quickly - too much anecdotal evidence out there means too many subjects won't be able to participate in the studies once they come a'knocking.

I am be happy to be counted.
But not so thrilled about being judged.

How anyone, especially clusterheads, could speak negatively about the Clusterbusters project is beyond me.

There will be no line to stand in (first or last) without the people that are sticking their necks out now to be counted.
There will be no research without support and the money to make it happen.

Whether or not you are willing to use clusterbusting to find relief from CH, please support Bobw the CBer’s and MAPS, it just might be the answer we're all looking for....................... :-?


Superdave 8-)

Wow.

I wasn´t aware of this at all. Never did use any hallucinogens before, but if the testimonials are to be believed, the small dosage long term effect is as good a reason to try them for CHeads as any.

I found where to get Psilocybe cubensis, Mexican or Equador variant. You can even grow them easily yourself. Very tempting to try this and see if the clusters stay away for ever.

To walk in the shadow of Castaneda and Huxley...

About the law: they should make a law against inhuman pain. If I do this I will certainly NOT take the law into account. Self preservation trumps any law I say.

And I´ll repeat that in any court.

I'm in my thirties, and I've had CH's in cycles since I was 17.

Last year, I had a particularly severe cycle where I was getting at the very least, 4 per 24 hours, every day. Bad ones.

One dosage of HWR seeds ended it. The only side-effect was slight nausea and a general feeling of discomfort and uneasiness.

In the weeks after, I occasionally had mild headaches that could be dealt with with a well-timed pair of aspirins. I was amazed that the seeds actually worked, and it was a great feeling knowing that they were gone.

The CH's have started again, a year later, so I haven't been 'cured' by any means. But I believe in HWR seeds and their effectiveness.

The legality of this medication is a non-issue. If these medications were legal to consume, the medical sector would have no problem

a) conducting proper testing with results everyone would be happy with and

b) finding a way to make it so expensive that insurance won't cover it.

Also, the fact that it these medications are illegal to consume will keep a large percentage of people of whom it has benefited from 'standing up to be counted'.

I hope that the skeptical crowd understands that this has absolutely nothing to do with recreational use or a subversive mentality. This is a real medicine that works for some people, and it should be studied further.

Going to my brothers house today to try mushrooms. I am now 2 weeks into my cycle having on average of 2 attacks per day (waking in the morning and usually after lunch). I will post results after i get home. I love all u guys and wish everyone a pain free day.

                             Greg

I've done shrooms, morning glory seeds, and hawian baby woodrose seeds, they haven't helped me much.  HOWEVER, I've only tried while IN cycle, but I will try to dose this year BEFORE cycle to see if it will work.  I let you all know in November.  ;)

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Chronic sufferers have reported relief from cluster attacks for up to two weeks using the hallucinogens, and episodic sufferers report a single dose of LSD can cure cluster headaches for as long as a year.
Lobbying by Clusterbusters has helped spur legitimate research like that now being pursued at Harvard.

Quote:

and episodic sufferers report a single dose of LSD can cure cluster headaches for as long as a year.

Episodic sufferers report a single dose of LSD can alleviate all cluster headache for as long as a year.
I fixed it for ya.
There is no cure for CH...yet
thebb

 Ok I tried the mushrooms yesterday 2 weeks into my cycle. Tripped hard enough to get the giggles and slight visuals (eg. defined outlinings, minor color variants, its definitly cool to look at lights and patterns). Slept like a baby last night... and so far not even a shadow today. I will keep updating my progress.
 On another note i was prescribed imitrex today and 9 pills cost me 240$. Does anyone know how i could posibly ge them cheaper through canada or any other means besides having insurance?

   Wishing everyone a pain free day,
                                                         Greg

The Spaniard wrote on Jul 21^st, 2008 at 7:11pm:

Wow. I wasn´t aware of this at all.

A good enough reason why IMHO this topic should be kept on page one.

At least untill 2009 anyway.... :)

Best of luck Spaniard.

CArl...

Well it's been 2 days now since my last episode. Not 1 headache yet.. :) I feel slight shadows in the morning (could be paranoia) but not anything that even requires caffine. So far the CB has worked out for me, even being over 2 weeks in a cycle that normally last 5-8 weeks. The best part of it all is i'm sleeping soundly at night.  :)    
I wish everyone pain free days, and i will keep you posted on my progress. Also if anyone wants any info on the way i prep. or take the mushrooms just let me know.
                                                   Greg

Too good to be true... :-/ I awoke to a 6 taking a nap this afternoon. I'm not gonna say it didn't help me but its definitly not a permanent cure (for me). I will say if it cuts down on the frequency of my ch i will definitly call it a treatment. It was still worth it, having a 2 day break in mid cycle. I don't know if i'll get back on schedual with the usual 2 or 3 a day, (hopefully not) only time will tell.

Greg wrote on Jul 25^th, 2008 at 5:01pm:

Too good to be true... :-/ I awoke to a 6 taking a nap this afternoon. I'm not gonna say it didn't help me but its definitly not a permanent cure (for me). I will say if it cuts down on the frequency of my ch i will definitly call it a treatment. It was still worth it, having a 2 day break in mid cycle. I don't know if i'll get back on schedual with the usual 2 or 3 a day, (hopefully not) only time will tell.

give it a week or two.

what johny said, im glad you got some quick relief, but you will need 2 or 3 follow up doses.  ;) That should do the trick. Coach bill

As another newbie on my 10th week of ch's I am ready for some clusterbusting myself. The lithium doesnt help much, the imitrex makes me vomit and the oxygen gives me sinus infections from drying out my nose too much. Where in the world does one find such a thing in Copenhagen? I am too the point of going out and looking under cow pies for shrooms. And I dont like to handle cow pies.
Sophia :-?

Get thee to the Netherlands.

wrote on Jul 26^th, 2008 at 10:06am:

Get thee to the Netherlands.

And do it quick. They are outlawing them there, too.  :-/

We're not exactly sure when it will, but I do advise anyone who has the possibility to come here and wants to clusterbust, to come quickly.

Those stupid christian democrats! A research department from the governement itself advises AGAINST outlawing them, for there are no real risks, but they are pressing for a prohibition anyhow.

Whatever happened to our beloved country, where they are taking away freedoms one by one?

Damn them all!  >:( >:(

Regards, Pascal.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE is a site that will tell you how to farm and where to get spores (i hope this helps). I will try another dose this weekend. thanks again for the useful advice again guys. Wishng everyone PF days.  
                                Greg

Sophia wrote on Jul 26^th, 2008 at 4:07am:

oxygen gives me sinus infections from drying out my nose too much. Where in the world does one find such a thing in Copenhagen? Sophia :-?

Hello Sophia,

Oxygen can be delivered using a mouth piece, instead of the more conventional mask. I use a mouth piece, much prefer it. This may help with the sinus issue.

As for finding (Such a thing) there in Copenhagen. Why not do a little reading, & farm your own, it's really not that difficult, & there are many who would be willing to help you achieve this.

Another alternative would be to give the LSA seeds a try. They can be bought over the internet.

Do as much reading as you can before embarking on the CB treatment first...Ask those who have gone down this path before you, there are many on this site who are more than willing to help you. The better informed you are, the more chance you stand of gaining a PF status.

Whatever....The best of luck to you.

CArl...  

Sophia, maybe you should visit Copenhagen's quarter of Christiania. Maybe you can find the hallucigenics over there.

Just a thought.

Pascal.

sofia you can use a hydrater (i don't know what there called) with your o2 and that would help your sinuses. see pic and notice the canister. (thanks bbz)
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02 can be used while clusterbusting. and you will need it the day after.

It's called a humidifier.

I expected to see more, stand up to be counted. I suppose some of us after finding the help we needed, moved on to more important things. Things like qaulity family time, a favorite past time and a life that wasn't run by CH. That is a happy thought  for me.
However I do miss some of those people that helped me so much in the beginning. Wish they'd check in, either here or at Cluster Busters.
Where ever they are,   Cheers!         Sophie

Sophia,

What CArl said.....

LSA seeds (rivea corembosa (sp?)) can be order over the internet and will be shipped to you.  They are very inexpensive, and, from personal experience, are very effective in not only shortening my cycles, but stopping them from ever starting.

The seeds are perfectly legal to purchase and possess in all countries, I believe.  It is illegal to ingest them however.  So, purchase away - plant at few in your garden and you will have lovely Morning Glory flowers later.  

Please feel free to PM me and I'll be more than happy to walk you through the methods that I have found to be so successful.

Sandy

I stand up to be counted too...

I have tried shrooms on this cycle, and it helped a lot. Since I'm somewhat of a chicken, I really didn't do much, but it still helped! Right now, I'm on my 6th PF day!! Hurray for me!! I had a hard time finding them though (of all people, my Mom bought them for me; never thought she would buy me drugs! :D) so I started them pretty late in my cycle. I think I'll try the seeds next time around...

Jess

Sophie wrote on Aug 7^th, 2008 at 4:01pm:

I suppose some of us after finding the help we needed, moved on to more important things. Things like qaulity family time, a favorite past time and a life that wasn't run by CH. That is a happy thought  for me. Where ever they are,   Cheers!         Sophie

Ditto on the Cheers!  I'll raise my glass to Life and Living it.

You can count me!!

Shrooms have changed my life from being a 20 year episodic veteran to being now completely PF, no meds, nothing, just God's little wonders.

All Hail The Clusterbusters.  8-)

I did shrooms just for fun years back through a cycle to get my mind off it before even discovering this site or a neuro doctor.  Only to find out I didn't have a single CH for a week and then did them again the following weekend with the same results.  The only reason I haven't done them since is because they're hard to find.   I don't give a rats ass if they're illegal.  PF is the key here.  

The next batch I hear of being around, i'll be stocking up and they're way cheaper than meds.

Don't wait, do some research and grow your own.
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Chuffy wrote on Aug 15^th, 2008 at 10:07am:

Don't wait, do some research and grow your own. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

yep even if your not in cycle. don't get caught with your pants down.  they're good for at least a year or even longer if you keep them in the fridge. ;)

A friend called to tell me of this thread, and I knew I had to come and give CB's a shout out.

I haven't been on the board in a long time, but those who remember me will also remember the hell I have had with these damn things.  I've been chronic since day one, and not just a meager two or three a day hits.  A good day for me is 7 or 8......a bad day is one every hour, day and night.

Shrooms were the only things that ever gave me any relief.  Did they cure me?  No.  Did they give me relief?  YES!!!  I think I went around two weeks without a hit.  In my case, that is unheard of.

Conventional meds came close to killing me.  I accidently mixed my triptans and ended in a hospital.  I am a firm believer in the fact that regular meds will kill you much faster than anything that is gently grown by nature.  

As others have posted, this is a personal decision.  Do your research, read, talk to others and then make up your mind.  I can't think BobW enough for his help.  He has done what no other has done to help cluster suffers.

Tracey  [smiley=cool.gif]

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[smiley=me&mb.gif]

count me again. Coach Bill

This is my first cycle in close to 5 years.  I could have sworn the RC seeds would help because they helped a good friend who was chronic.  No such luck, and believe me I dosed correctly, detoxed, all that good stuff.  I have oxygen which is awesome, and I know that does not help some people.  I would support any efforts to legalize, educate, etc.  because it helps others.  But I appreciate reading the posts here from those it did not really help and needed to look elsewhere.  There is a chance that my cycle is less intense because of the doses,  hard to tell since it's been so long since my last cycle.  I have a bottle of pred I keep staring at, but I may just stick with the O2.  The anecdotal evidence on this board regarding pred problems make me very nervous.   I may try to get a stash of the stronger stuff to have around in case of another cycle in the future and see if that helps.  Right now, all I can get are those seeds.  Even if I procure the other by the time I get a cycle it's always gone bad.   Good fortune for those who broke their cycle with those, I wish I had been that lucky.  For now, I am just spending my nights chasing attack ramp-ups every 2-3 hours with my trusty 02 bottle.  I will be happy when it passes.  For those pain-free thanks to this, kiss the ground for me will ya?   I should be in that nirvana in a few more weeks or so.
 



     

Hello All, I thought I'd check in and tell you all my good news! Next month it will be three years since I was in cycle. Never ever been that long pf before. I don't maintenance dose regularly but if I get a twinge I dose. Always with shrooms or seeds. Its certainly changed my life. I'll always be grateful to Clusterbusters. As far as legality is concerned...I couldn't give a rats arse. After all, its illegal to commit suicide too!

Quote:

I expected to see more, stand up to be counted.

LOL!  Sophie, this thread has gone to 9 pages !!!!  I'd say a lot of people stood up to be counted.  Also no one has gone away where the "alternatives" are concerned.  There are always many people here to answer questions or lead someone in the right direction.  Here, as well as cluster-busters site.

Bump

wrote on Jan 4^th, 2009 at 8:32pm:

Bump

[smiley=curtain.gif]

I haven't been around for a while and didn't see this until now but I'll testify! My last cycle ended in Feb '03 and I've been dosing twice a year since and I've had NO CLUSTER HEADACHES in almost 6 years! That's by far the longest I've gone w/out dealing with it since 1985.
It's been a great pf ride and me and mine thank you for all you and yours have done Bob.  

Jim

Thanks for stoppin in Jim.

Great to hear that you're still doing so well. Long may it continue.

Bob

i have read this forum every day for more than 3 years but reluctantly i
have been avoiding this thread pretty much most of the time...dunno
why...maybe im stupid...

i have to say that i dint want to get "converted" and those are my own words. i was really hoping that i could find a useful solution via the docs...although its prob only been about 4 years since my first attack ive tried almost everything in terms of drugs...and for me the side effects have been pretty bad.

worst was topamax...although it worked  maybe in cutting down my attacks 50% of the time and reducing the number by half it left me like a zombie...then it started to screw with my heart and give me major panic attacks (rare but not uncommon)

just before i continue i want to tell you about my headaches.

before i lived in japan (for about 5-6 years) and all was sweet.
then my grand father died and i came back to austraila for the funeral.
when i was in australia for the funeral i got influenza very bad. but by the time i was ready to go home it had just turned into bad sinus trouble and some headaches (little did i know....)

when i got back to japan it kept getting worse...
with each day over about a week the pain would come and go about every hour (maybe two or three if i could manage some sleep) until it got crippling.
the pain was typical cluster style (tho i didn't know it at the time) screwed up left eye, left sinus going crazy, aches down my left side, and this death bringing pain behind my left eye...

i went to the doctors and they told me (i think i went to three docs at this stage..) that i had sinus problems...

so many drugs later and  after no love the headaches dissipated...
yay!!!
a month later they are back again...
i cant really remember but without "short bullshit cures" - that i ahve tried from this site...some semi ok some resulting in nothing... i have not had a day without a headache since..
in the path of my looking for help ive been to maybe 6-8 neurologists in two countries...been fired from two jobs...lost two girlfriends...one of 5 years...lost many friends who couldnt cope with it (i dont really blame them) and made stronger friends...

one thing about these headaches are that they have taken me to the brink of suicide...ive been there ...tried it...and thanks to people that were looking out for me when i was in cycle i failed..  :D

ive been to hell and back...some weeks only a few times...others many times a day.

after reading all these posts in this tread i just wanna make some points..

i have no problem about taking illegal drugs to help me live....and my headaches get so bad that there is no way i can hold a job when they do get to the extreme so who cares about them....im in my "down cycle (two or three headaches a day - and maybe kip 3-5)" at the moment...there is no off or on...but when it gets to a full blown "on" cycle  i cant leave the house...there is NO work to worry about being drug tested...there is NO life...

i still consider my self episodic even tho i have had headaches pretty much every day for the last 3 years...i read these boards daily and i can understand the hell that some of the others that have no "down" time must feel...

anyway...

all that being said.

i think im starting a new cycle of "bad" headaches just this past two weeks....so...

if i can im gonna try to see if the clusterbuster stuff works for me.

the problem may be getting the stuff in Australia...i wanted to do musshies but its summer here now so it might be hard. i would rather try seeds but i really dont know again if its doable in australia...

anyone who condems what i want to try to bring a bit of life
back please read what i have written carefully...

ill try to let you know of the results if i can get the stuff together...
if not ill prob be to dead or massively  tired in the coming weeks to check whats going on....

all the best and painf free to all

cyb

Count me in my friend!

Aborted the beginning of a cycle dead in its tracks using shrooms roughly 4-5 years ago by accident (the first time) and again during the next cycle (realized there was some kind of link).  Needless to say I was doing them for fun back then to get my mind off of the clusters, but never knew they would abort my entire cycle.  Since then, shrooms are very hard to find, however I have dosed twice now on rc seeds since a cycle is due for me jan.-feb.  So far, so good and i'll keep my fingers crossed.  If I even feel the slight shadow like I usually do a week before the cycle, i'm dosing that night after work.  I had no hangover affects at all the other two times and I ate 25 seeds (round 1) and 65 (round 2).  When I ate 65 seeds, I had a little nausea, but nothing major.  Other than the nausea, I barely felt anything, but a slight body buzz.  The intensity was nothing like shrooms which is even more of a bonus.  

Lets hope the seeds do the job.  

Wishing PF days to all  :)

Chad

Quote:

anyone who condems what i want to try to bring a bit of life back please read what i have written carefully...

Should anyone condemn you for trying to treat CH with alternatives they will have to answer for it. Here anyway.
Good for you I hope you find relief. The seeds are the easiest to obtain and use. The shrooms are a bit more difficult, but have a higher efficacy rate.
all the best
the bb

Quote:

anyone who condems what i want to try to bring a bit of life back please read what i have written carefully...

No one in their right mind  would ever condemn you here.  

I'm not knowledable about Australias laws, but the seeds are legal to purchase here in the U.S.


Good luck to you.   Linda

whew...took me a few days to get through this thread... ;D

COUNT ME IN!

What I love is how a few "concerned citizens" always want to get in a snit over the possible side effects of the psychedelics...when we KNOW what nasty havoc our prescription meds can wreak!!!  :D

I have been reading old journal reports from the 60s when they did all the initial testing of LSD, and from what I've read, they found NO long term side effects.  

as for legality and the workplace, you can't worry about drug-testing if you lose your job from CH!   ;)

And let's not get too worked up about whether or not doctors are endorsing this...honestly, they can't risk their jobs by endorsing illegal drugs; I'm really pleasantly surprised that a few GP's and neuros HAVE backed up some buster's efforts.  (My doc wouldn't give it the official green light, but she's happy for me nonetheless.)

God bless you, Bob!

Hy Pink Floyd. you wrote "This research is going off many directions, 3 institutions in the US and Europe"...Is it possible for you to give me the names of these institutions, thank you very much.
Bloobrain/bluebrain

rc seeds and 02 are still working for me.  I do still get the occasional K7, but nothing that 02 doesn't take care of.  Life is good!!

Beth  :)

bloobrain wrote on Jan 9^th, 2009 at 4:15pm:

Is it possible for you to give me the names of these institutions, thank you very much. Bloobrain/bluebrain

Hi Bluebrain,
Harvard Medical School, McLean Hospital.
Yale School of Medicine
A Medical School in Germany that I'm a little reluctant to specify at this moment as I don't have permission to do so. We are at a critical stage.
If you know of any German nationals that might like to become part of an ongoing clinical study, let me know in email or PM here.

Bobw

edit to add: BTW, thanks to everyone for your kind words, encouragement and for keeping this thread going.

Shrooms and seeds both work great for me. Use them the way shared on the CB site. I will stand up and say thanks to all those who shared the information. What I learned from from CBers did me far more good than all the doctors and neros I have seen. I shared how I was using seeds with my current nero and he said " that is very interesting and it doesnt supprise me" He knew of the close door effect and said he was going to tell his other cluster paitent about it if he could figure out how with out getting in trouble. That is a shame that the legal wall still keeps so many in pain. My nero also said dont count on it being tested or becomming legal because the sad fact is there are not enough cluster sufferers to make it profitable. So my choice is to be PF legal or not.

 I have tried rc seeds with no effect,   I have been trying shrooms for about 5 weeks now.   The first dose 2g had no affect,  second dose 2.5g I was pain free for the first time in years but it only lasted for 30 minutes then I got a kip 9 for about 45 minutes then puked,  third dose 3g was about the same as #2 without the puking and the fourth and fifth dose I was pain free for about a 1/2 hour and then a strong shadow kicked in a good kip5-6 and lasted for three to four days.   I have been chronic for almost four years and have constant shadows k2-4 some times k5,  I know it is harder to bust a chronic cycle but should I continue to try,   I was going to dose again today but didn't because of the fear of making my shadows stronger again.  Bob what do I do?

Well, I'm not Bob, but I would let it be for a week and see how it settles in. Then go for the big dose. Dosing three times in ten days did it this time around at least for me. I had shadows for a week and a few nightimes hits but after that ...nothing. Big doses this time. 3g dry.
Keep up the good fight Phil, dont eat at least 4 hours before dosing and use the tea recipe, that will help with the nausea.
the bb

I dosed with 75 RC seeds Tuesday night, got my usual hit after falling asleep that night.  Since then, I've only had to hit the O2 tank once - this is incredibly good for me. I had been in a 30 day pattern of 3-6 hits every day. (Luckily, O2 NEVER lets them get bad)

Seeds work gradually for me. Not knowing this caused me to give up on them earlier.  I kept expecting the hits to just stop.  Now I realize that for me, it's a long process - not "an event."

This time I'm going to stick with it. Going for another 75 seeds tonight and I'll continue the doses for months if required.

Marc

wrote on Jan 12^th, 2009 at 12:50pm:

Well, I'm not Bob, but I would let it be for a week and see how it settles in. Then go for the big dose. Dosing three times in ten days did it this time around at least for me. I had shadows for a week and a few nightimes hits but after that ...nothing. Big doses this time. 3g dry. Keep up the good fight Phil, dont eat at least 4 hours before dosing and use the tea recipe, that will help with the nausea. the bb

 Tx bb  8-)

Give it some CH-HELL, Phil!

Marc

wrote on Jan 12^th, 2009 at 12:50pm:

Well, I'm not Bob, but I would let it be for a week and see how it settles in. Then go for the big dose. Dosing three times in ten days did it this time around at least for me. I had shadows for a week and a few nightimes hits but after that ...nothing. Big doses this time. 3g dry. Keep up the good fight Phil, dont eat at least 4 hours before dosing and use the tea recipe, that will help with the nausea. the bb

Couldn't have said it better myself.
Thanks for always being there to help out BB.

The tea is betetr for many people. It does help a great deal with any nausea problems and also helps get the psilocybin into the system quicker, often making the dose a bit more effective.

Bobw
P.S. Glad to hear you stuck with it Marc and are having some success.

Hy Pink Floyd, nice to here from you and thank you for answering my question. I know of one patient from Germany who is a member of Clusterheadaches group. I wrote my ideas about CH and Psilocycin/Psilocin under the name of bluebrain theory which I presented to this forum on April 24th, 2007. He was kind to contact me if he could make a link between clusterheadaches/bluebrain theory and his group in Germany.
German is not my strong but if you want to know more about this group please go to google and type bluebrain theory-ck-wissen.
I could try to contact him, please let me know before I do anything.
Further more, I am typing  my theory/article finish, based on bluebrain theory and my one experience with magic mushrooms (almost 4 years), which in my opinion explains in a scientific way, by means of a theoretical model, the pathogenesis of CH in a group of patients and the reason of why psilocybin/psilocin works for us.
For me the question was WHY does it work. I think I found the answer.
Any suggestion about whom I should contact.
Best regards. Bloobrain

Very interesting reading bloobrain.
I would like to see your paper should you like to share.
the bb

bloobrain wrote on Jan 13^th, 2009 at 3:25pm:

I think I found the answer. Any suggestion about whom I should contact. Best regards. Bloobrain

I will be happy to put you in contact with several people that I'm sure will find your work interesting (as I do) and would most likey want to comment upon it.
I'll PM some email addresses.

Thank you for your continued work,
Bob

any fellow cluster heads in melb send me a pm.....
this cycle is getting shocking.

I just went for the seeds again last night- 75, crushed & soaked for 3 hours...no "effects", but I could definitely tell something was going on...

then a few hours later, I got very "gross" feeling- like I'd been on a 3-day bender!  :D  Went to bed and woke up in the night with classic droopy teary eye, clogged nasal passage- but no pain!!!  

Today I woke up two hours earlier than usual, bright-eyed and bushy tailed and full of energy- and pain free!  I hope it lasts.

(I still prefer the mushies, though- I always feel terrific and never get sick or hung over.)

UnderTheRadar wrote on Jan 15^th, 2009 at 2:26pm:

I just went for the seeds again last night- 75, crushed & soaked for 3 hours...no "effects", but I could definitely tell something was going on... then a few hours later, I got very "gross" feeling- like I'd been on a 3-day bender!  :D  Went to bed and woke up in the night with classic droopy teary eye, clogged nasal passage- but no pain!!!   Today I woke up two hours earlier than usual, bright-eyed and bushy tailed and full of energy- and pain free!  I hope it lasts. (I still prefer the mushies, though- I always feel terrific and never get sick or hung over.)

I hear ya on the feeling like a 3 day bender.  I like your choice of words, LOL!

I dosed twice in December well before the next cycle which is suspose to be now and luckily I have felt no signs or early signs that a cycle is coming.  Knock on wood.  I may dose again within the next couple of weeks to keep PF days going.  

Mushies are definitely my weapon of choice.  The problem is finding them.

I'm glad you're feeling PF.  I wish it to all!

Peace,
Chad

Quote:

Mushies are definitely my weapon of choice.  The problem is finding them.

They are easy to grow. Then you know what your eating and have a supply for years.
all the best
the bb

I usually bust with shrooms, but I tried HBW seeds this time.  4 seeds on Jan 8 and 6 on the 13th.  I had harsh HA's after both treatments.  3-4hr bouts(kip 7-8) with 30 min breaks in between.  I have had only one HA since, and that was brought about by my own stupidity.  I thought I would see if I could handle a few Guinness.  Even that HA was very slight KIP 4, and was easily aborted by a Red Bull in about 20 mins.  All in all, I've only had minor twinges over the past few days.  I think I might be o the mend.  Knocking on every Fn piece of wood in the joint.  Cheers to all who gave me advise.  

Count me again. Bill

Pinkfloyd wrote on Jan 11^th, 2009 at 1:15am:

Harvard Medical School, McLean Hospital. Yale School of Medicine A Medical School in Germany that I'm a little reluctant to specify at this moment as I don't have permission to do so. We are at a critical stage. Bobw edit to add: BTW, thanks to everyone for your kind words, encouragement and for keeping this thread going.

i've been pf since i busted over a year ago. i'm glad i stuck around and i'm glad you put your hart behind this bob.

it's great to see your making pro [smiley=sayyes.gif]gress

Well....

I completely busted my last cycle with the RC seeds.  That was the first time I ever tried. Nothing to it!

Started another cycle about a month ago, and haven't been keeping up on my seeds like I did the last time. Worked great every 5 days til I noticed a difference, then went to once per wek, then once every other week..... Kinda dropped the ball this time. Haven't been doing that.

Anyway.... Haven't had much luck with it yet so far this cycle, but I'm about to take my 3rd dose in 15 days. I'm GONNA keep at it again like I should have from the start! Hopefully once I get a few doses in me, I can abort this cycle again.

Take care all!!

Adam

It's been a long time since I first started reading up on this forum, and an even longer time I've been suffering from CH, so I felt it might be pertinent to post some of my experiences, partly as I've just had my first complete remission in 15 years.

I've been a recreational user of psychedelics for nearly thirty years now, in varying amounts over the years, but generally a few full-dose trips a year, and plenty of milder ones too inbetween. Since 1993, I've been suffering CH every year between Sept 21st and December 21st - Fall Equinox to Winter Solstice.

Naturally, it took me some years before I became aware of the significance of the cycle, and it was actually picking mushrooms and experiencing the headaches at the same time year on year that made me realise something was going on. Ironically, I initially thought I was getting migraines from staring too hard at the ground!

Once I realised that the season itself was the trigger, and the rapidly-shortening days enabled me to predict when they would start, I then assumed I must be suffering from SAD, though experienced no symptoms whatseoever of that ailment, other than the time of onset.

Thankfully the internet eventually gave me the ability to diagnose the condition properly, and I approached various GPs over the years, some of whom were aware, others not, of CH. Various pills were tried with no success - Pizotifen, Sumatriptan, etc. Sumatriptan in particular caused very uncomfortable chest-tightening, that was almost as scary as the headache, though nowhere near as painful - more on that later.

My headaches generally came twice a day - around 4-5am, and then 12 hours later again. Not suprisingly, the loss of sleep and insane pain caused problems at work until a doctor's note at least confirmed to my employer that I wasn't faking it.

All the time, I'd been thinking about the significance of the fact that my headaches were less painful whenever I took mushrooms or LSD, or I just didn't have one at all, but I obviously hadn't made the link at all with daylength. Once I found the online research on treating CH with psychedelics, I decided to give it a go.

For the last four years, I tried with varying degrees of success, to get a handle on the problem - sometimes the headaches would stop for a week and then return, and once I actually moved the entire CH season back one month, but I never got them too stop, just fade in frequency for a while, or be lessened in intensity. Eventually I realised that my haphazard dosing times were probably the cause of the lack of success in stopping a cycle, as I was clearly feeling some benefit, but not succeeding where it mattered most.

The most eye-opening revelation for me was an experimental dose of a potent (and illegal) local anaesthetic, which I had assumed would be the worst thing possible. Not only did I have my first complete night's sleep in months, but the CH I had shortly after was incredibly mild, and stopped almost as soon as it had started.

I began using Melatonin a few years ago, in an attempt to suppress the night-time headaches, and within days, they had ceased. The daytime headaches continued however, which though interesting, was still frustrating! Still, that was half the headaches gone, with virtually no side-effects (as far as I could tell).

So last August, I decided to tackle the problem once and for all. Given that mushrooms were less reliable in terms of dosage, and the stability over time made me question the efficiacy, I decided to focus on using LSD instead, as it was reliably measured (liquid), and easy to ingest. It was also fairly weak, though high quality, and so one drop delivered (I'm guessing, based on effects) about 25mcg - not enough for psychedelic use, but perfect for this experiment.

Every Saturday, at lunchtime, I took one drop from the bottle - Saturday being the easiest day to manage it on for all sorts of reasons, but I figured the regular schedule was crucial, and less than one week separation counter-productive. Every night, beginning at the same time in August, I took 3mg of Melatonin.

Since that date, I have not had one proper cluster headache - a few shadows, and few 'visual migraines', but not a single CH. I decided to stop after the period would normally end, and settled for today as the last day of treatment.

My only concern with this, and it may be coincidental, but around the peak of my normal season (mid-November), I began experiencing what I believed to be early symptoms of angina (squeezing pressure in the top of the chest, and tingling pain in left arm) when out walking. Normally I'm very fit, and can walk miles in any day, but this issue began to worry me, as it seemed to have come from 'nowhere'.

I'm awaiting an appointment with a heart specialist to have checks made, and if I do have angina, so be it, and will deal with that as appropriate. However, my GP gave me a nitro spray on prescription 'just in case', though he hasn't actually diagnosed me with angina yet. I explained to him the dangers of nitro for CH sufferers, and got the blank look so familar to me on these matters!

So given my 'angina' feels identical to my single experience with Sumatriptan, is it at all possible that my self-medication with LSD is actually inducing mild angina as a side-effect - ie vasoconstriction? There is some family history of angina, so I'm not trying to avoid the issue, it just seems puzzling that it would 'come on' so quickly, and right in the middle of my CH season.

There are many other complications that could clearly make this difficult to separate out, and I'm not overweight, very fit, though I smoke - mostly cannabis these days, rather than tobacco. It's also been very cold lately, and I've had some level of emotional stress - all triggers of angina.

At the moment, the relief from no CHs vastly outweighs the pain of the 'angina', but I'm aware that angina can be fatal, whereas CH not, so I don't want to ignore it. Also I'm aware that virtually all my 'treatment' has been with illegal substances, and in the case of the LSD, almost impossible to verify absolutely in terms of purity and dosage, but experience suggests to me that it's legit, and pure. Notwhithstanding, I appreciate that it might be difficult for others to empathize or understand, and very difficult for most to replicate.

I'm just wondering, if I haven't bored everyone stupid with this, whether anyone else has experienced similar CH/angina polarity, and given that nitro will cure one and cause the other, what hope I have of treating the angina painlessly? Going back into a full CH cycle now would not only be totally depressing, but very inconvenient!

Thanks for your time.

After all the pain CH's go through I can understand self research and using yourself as a ginues pig.  I had a heart attack after using immetrix, and the doctors can't be sure but this may be what triggered it.  Maybe angina comes from that?

I wrote this back in June:

The DAY Blake goes out of remission I'll be on the phone begging a 'buster' to help me dose him!!!!!  

Well, Blake's remission ended.

We're standing up to be counted.  

Results:  Very good.....actually GREAT!

Again, thank you Bob and all the busters for your continued work.

With gratitude,
Jackie & Blake

Jackie wrote on Feb 8^th, 2009 at 9:35am:

Results:  Very good.....actually GREAT!

You just saved me an email asking how things were going. ;-)

Great news indeed,
Bobw

None of these things, including Imitrex and oxygen, have the success of psychedelics in the treatment of clusters. You can believe me or not. Believe the dozens of people that have testified to their effectiveness, or not. They've been talked about here for YEARS and the effectiveness remains the same....75-80% of people using them, BREAK their cycles early. People that have been chronic for years, are now episodic and happy about it. Episodes they can control or eliminate.
Do you want to treat one attack out of the 1000 you'll be having this cycle? Inject some imitrex. Want to treat those 1000 attacks with oxygen......fine, order 20 M tanks. Considering to permanently sever some nerves? Even that has a lower percentage of success than psychedelics.

Here here!!!!  Standup and be counted!  And I will stand up for this individual.   Are some of you offended?  I do not understand, this is not a push to "use" drugs, it is a declaration of something that this individual feels passionately about- the well being of other clusterheads.  I have wanted to write something similar myself, but I am a new comer.  I have often been frustrated (but still love it) with this site because of that!  I originally found the information here, but when I look at the cluster survey I am dismayed to see the statistics for this treatment are not included.  Illegality aside, this is by far the best treatment.  There are studies that provide insight as to the pathiophysiological mode in which pyscs work to treat cluster sufferers. It is because of the push by clusterheads that these studies are being performed, which may eventually lead to more studies and a cure!  This is why these statistics are important.
I've said this before- What medication can you take once or twice a year ($30-$40) with no side effects, FOR ANY AILMENT?  I am not claiming supiriority, or trying to cram shrooms down anyones face, everytime I'm on here someone says O2, O2 (which has not worked for me), why am I not insulted?  I cannot use Immetrix because of heart attack (probably induced from the immetrix SIDE EFFECT) I am not offended by the whole section dedicated to it.  I certainly would not withhold information about it (immetrix)to others if I felt it would help them. As a 30 year sufferer who has found relief ONLY through the conservative use of psilicybin, without any other ill effects it does make me wonder why more individuals do not try this, and why we can't talk about it?  Illegal smegall!!!

Its something I have never tried, mostly fear I suppose. Having an addictive personality doesn't go well with pain relievers I am hesitant to try anything else. As of right now I limit myself to advils and my smokes. Not to mention work would have a fit...
Its a subject hard to find out about though, and it was interesting to read someones experience on it. Thanks for the input

ArcticSpirals, you can put your fears to rest- these particular hallucinogens are classified as "ANTI-addictive".  Also, it's not like you'll be floating around singing Pink Floyd tunes for three days- so why does work even have to know about it?  :D  

Yes, it is hard to find out about..it's a shame we still have to sneak around about it at all, when it has such a high success rate and no long-term side effects, which can hardly be said for most of the stuff we have to use.  It's even MUCH safer than your advil!!  ;)

UnderTheRadar wrote on Feb 8^th, 2009 at 11:36pm:

It's even MUCH safer than your advil!!  ;)

Carefull there Radar.

The methods attested to here have proven over and over again to be a godsend for many of us.
The majority of us suffer no ill effects just pain relief but there is that percentage that should not use the buster ways.

We cant lose the respect for these medications as they are still potentially a very dangerous drug to certain individuals and especially pregnant women.

Cluster busters.com has spelled out many of these dangers well and all should be encouraged to read them and do any further research they can.
As BobW is allways saying the dosages can and do differ from plant to plant as well. Unlike the synthetics created in a lab.

You are right in that they are classified as anti-addictive and psylocibin has been tested in clinical research to assist in breaking other addictions as well.

That said I'm still livin the dream of no pain.
I can hardly remember how long its been anymore since clusters ruled my life with the 8-12 attacks I used to get each and every day.
Pain free to me is worth it for the small maintenance doses of RC seeds I consume monthly.
Even more meaningfull is all the other sufferers who suffer no more.

Its information I gald to recieve, no hurt in that. I do take milk thistle as a daily in fear of my liver just cuttin out on me. Anyhow thanks!

UnderTheRadar wrote on Feb 8^th, 2009 at 11:36pm:

ArcticSpirals, you can put your fears to rest- these particular hallucinogens are classified as "ANTI-addictive".  Also, it's not like you'll be floating around singing Pink Floyd tunes for three days- so why does work even have to know about it?  :D   Yes, it is hard to find out about..it's a shame we still have to sneak around about it at all, when it has such a high success rate and no long-term side effects, which can hardly be said for most of the stuff we have to use.  It's even MUCH safer than your advil!!  ;)

Paige,

I'm not getting something. If you are such a strong advocate as is indicated above, why does your tag line say:


Quote:

6 3-hour hits/day since June, and no meds work.

Just curious. That's 18 hours every day.

>sigh<  okay, I'm an advocate because it works so well for most everyone who tries it, and it's the only thing that has helped me at all (I've gotten about a week at most of relief at a time, and I'm on some other meds that counterract it, but that's better than nothing.)

But can't I be supportive of something I believe in for the simple fact of the amazing statistics on it?  Why do you feel the need to pick apart my post, like you've caught me in a lie or something?  That really makes me sad.

Yes, that adds up to about 18 hours a day.  some days are better, some are worse, but that's the average.  I put that on there to remind some folks of why I'm here...for support for a horrible disease that's tearing my life and my family apart.  Now, are you satisfied?

Sadder, More Depressed Paige

UnderTheRadar wrote on Feb 9^th, 2009 at 5:14pm:

>sigh<  okay, I'm an advocate because it works so well for most everyone who tries it, and it's the only thing that has helped me at all (I've gotten about a week at most of relief at a time, and I'm on some other meds that counterract it, but that's better than nothing.) But can't I be supportive of something I believe in for the simple fact of the amazing statistics on it?  Why do you feel the need to pick apart my post, like you've caught me in a lie or something?  That really makes me sad. Yes, that adds up to about 18 hours a day.  some days are better, some are worse, but that's the average.  I put that on there to remind some folks of why I'm here...for support for a horrible disease that's tearing my life and my family apart.  Now, are you satisfied? Sadder, More Depressed Paige

If the meds don't work, why are you taking them?  Why not just use what works for you?

That's the point- nothing works for me!  :D

Let me clarify, though...(I just hate writing long posts, because I know what a pain they can be to read, so I've tried to be brief and give cliff's notes- but I'm always pleasantly surprised when you folks seem to really pay attention to what I've been going through!  :'(  I'll try to keep it concise, though.)

Okay, so this cycle started in June, and worked it's way up in intensity and regularity to where I was having regular 2-3 hour long hits about 6 times a day; but mine ramp up and down less abruptly than most of you, AND it seems to have turned on my migraines full-blast- so there's been the nauseous migraine stuff every day in the background.

My doc tried everything she could throw at me, including oxygen several times; stuff either makes me sick, or I have no reaction at all.  Keep in mind, too, that I've already tried all the usual migraine meds over the years for the migraines (a lifelong prob for all the women in my family) and none worked...also, my suspected first cycle ever 3 years ago they said "migraines" and tried it all and nothing worked for it then, either.  Same pattern- about 6 or 7 months of all day long pain.

So far, the only things that have helped at all:
1) my ADD meds.  This could be interesting.  First I was on Vyvanse, a time-release pro-drug; when the cycle started, my body started blazing through the stuff, and instead of 12 hours it was lasting about 3.  So she switched me over to instant release Dextroamphetamine (adderall generic) and I was dosing 40mg three times a day.  As I would acclimate to the drug throughout the day, hits would break through, but for the morning to about 2pm I would be (relatively) okay...BUT it took a tremendous toll on my body.  :P

2)Floricet.  I know, I know, narcotics=bad.   :D I would only take it once in a while, and it did help some; unfortunately, it would make it VERY hard to get up in the morning, or function much at all, so it was only a last resort when I really needed a break.  However, it's inconclusive as to whether it was helping the CH or just helping the overall crap factor.

3)the hallucinogens.  I've dosed 5 times now, twice with shrooms and 3 times with RC seeds.  Each time I do it, I'll get from one to two weeks of reprieve from both the CH and the migraines; but I'm on zoloft, and it's a pain in the patoot to detox, so I've been stingy about doing it...also, I don't look forward to the seeds because they taste SO BAD!!!  ;D  However, I feel so great after the shrooms, both emotionally and physically, that I think I'm going to get a grow kit (it's been way too dry around here to find much.)  Somewhere on the board I've spoken more about my history with them, so I won't go into that again.

So that brings me to the present day- after the toll it all took on me last semester (and doing 12 hours of studio art classes)  I'm dialing it back.  I'm back on a normal dose of the ADD meds,  i stopped using the Floricet, and I'm taking occassional dramamine to take the edge off the nausea (I've also cut all my Graphic Design classes so I'm not on the computer as much.)  

My next plan is to start getting more regular and frequent with my shroom or seed dosing.  I thought again that i had kicked it after my last seed dose, but it's back...and now the pattern and style of hit is changing...as of the past few weeks, I really can't tell what's going on.  But I've gotten bitten so many times after thinking it was over that I'm loathe to make any predictions.  Like yesterday was hell- I got a hit at 9am and it lasted all day; but today was pretty okay until about 4pm.  :-?  

The good news is that I've gotten in with DARS here on campus, and they are looking into what they can do to help.  They might at least be able to get me in to see a neurologist and and get the diagnosis down pat.  My doc is pretty confident, but as a University Health Center GP she doesn't feel she has the authority to push this much more.  

>phew< So that's where I'm at...hopefully with DARS I can get somewhere, and maybe with more regular dosing I can kick the beast.  And I'm sorry if I sound gruff sometimes;  actually, half the time I'm just being funny, but it doesn't come off so well in type, does it?  ;D  And some days I can't cope much at all...but we all know about that all too well.  You know, my therapist is in awe of each and every one of you; he deals with chronic pain patients a lot, but had never run across CH before, and he is amazed at the strength and tenacity of this group of folks- he really gives us props for what we go through, and he totally agrees that no one but a fellow sufferer could understand what we go through.  And he is very grateful that I have a group like this to be a part of, and so am I.  :'(
Peace y'all,
Paige

UnderTheRadar wrote on Feb 9^th, 2009 at 5:14pm:

But can't I be supportive of something I believe in for the simple fact of the amazing statistics on it?  Why do you feel the need to pick apart my post, like you've caught me in a lie or something?  That really makes me sad. Yes, that adds up to about 18 hours a day.  some days are better, some are worse, but that's the average.  I put that on there to remind some folks of why I'm here...for support for a horrible disease that's tearing my life and my family apart.  Now, are you satisfied?

I'm glad you put down the gun before I asked you to.

I was really only trying to understand, not pick apart your post. And I'll only be satisfied if you can believe that there was nothing nefarious intended. Really.

I'm truly sorry you go through what you go through. As Samir from Office Space always says, "That is a suck."

Damn, Paige....you are all messed up :)

Let's see....clusters, migraines, add, art student :)....wow. I bet that's like the half of it....

Just hang in there, and be 'radar', and you will have major support around here.  ;)

Like my new avatar, Brew?   ;D  I think that sums it up better than anything I've heard so far- "that is a suck."

Thanks, KJ- you've inspired me...maybe Paige is f'd up, but perhaps Radar can endure.  :D

Yeah, I've had a lifetime of failures from the ADD, and I had JUST started treating it for the first time; finally got to go back in school, moved in with fiance, baby boy's in kindergarten, things looking pretty swell; I thought I had finally beat ONE disease, only to have this pop up.  I still haven't come to terms with this by a long stretch... but I know there's plenty of you out there who've been there and done that, and hopefully we'll all make it to the day they find a cure, eh?  ;)

-Radar!

UnderTheRadar wrote on Feb 10^th, 2009 at 1:59am:

Like my new avatar, Brew?

Yep, I love it! Go Samir!

Glad there wasn't any misunderstanding.

Now please return my red Swingline stapler, if you please.

arcticspirals wrote on Feb 8^th, 2009 at 6:47pm:

Its something I have never tried, mostly fear I suppose. Having an addictive personality doesn't go well with pain relievers I am hesitant to try anything else. As of right now I limit myself to advils and my smokes. Not to mention work would have a fit... Its a subject hard to find out about though, and it was interesting to read someones experience on it. Thanks for the input

The first time you try a hallucinogen it is scary, but once you feel you have control, it's okay.  As some have said, it's best to read clusterbusters to see if it is for you.  I have busted two cycles with shrooms a couple years back.
I keep them in the freezer now since I finally found a source.  I just did a 75 rc seed dose on Sunday night as preventative maintenence which I have been doing every other month.  I will say the seeds are easily to handle, but are horrible to get down the hatch.  The shrooms are easy to eat, but give you a more intense feeling.  I did them in college for fun before I was diagnosed with CH.
I realized that they stopped two different cycles after dosing.  It wasn't a coincidence either after finding this site.  I thought they would take my mind off the headache and not only did they do that, but they stopped the cycle.  

I have found nothing addictive about hallucinogens.  I'd rather only do them when I need to.  I can do seeds alone, but shrooms preferably with some friends because of the intensity.  It's all worth it to stop the pain :)

Good luck!

Thanks~ like I said, information is a blessing. Gives me ideas, areas to go search and explore.
I'm not an addict of more than smokes and embarrassingly~ computer games...but I worry I will find something as an escape instead of a cure. Which is why I consider my gaming an addiction.
I returned my first bottle of vicodin because I was taking one for foot pain and two for inlaws :)
I have been reading..alot ..and found out there is a new mushroom farm close by and she quietly mentioned she does medicinal's as well. I think I will take more time to research. Thanks for the info, and encouragement.

As soon as I found out about psilocybin being a treatment I got my hands on some and was CH free for 2 1/2 years.
I bought an ounce last year and kept them in my freezer, then eventually ran out. Not only did the end of my bag lose its potency I failed to get enough in my system before my cycle started.
So, I started my cycle around the new year. I called a guy and he made me a prescription of Chocolates with a particular strong strain. Never had a problem finding them.
Chocolate has never been a trigger for me so im not sure that has much relevance here.  
I found dosing this way instead of loose shrooms was more reliable with amounts and potency and was an easy measurement for me.  
So I started eating quarters then moved up to half. I ate them everyday for 2 weeks. $200 bux later.
Granted I never "tripped ballz", I did take enough that I was plenty high.
And I would eat more than my normal amount before I went to bed, if I wasn't feeling up to being high.
So unfortunately this didn't break my cycle. Although I havnt had anything above a K6 this time around (very weird but very awesome).  Im wondering if I should eat more since its been 2 weeks since I last ate them and my cycle is now going on 6 weeks. Lame. Any Ideas?

Bryn.

I'm mostly "shadowing" in the 3-6 range now, constantly, with occasional breakthrough Satan hits (as of the last 2 weeks, that is...still no real pattern.)  And i get a migraine about two out of three days.  I'm wondering if dosing again will help.  

I must add that whatever these things are that I am calling shadows, they DO come with pain- I've seen some folks describe their shadows as all the symptoms but withOUT pain, but these do hurt- just nowhere near the thugs I've :-?been getting...but now the hits that do break through are like mack trucks- fast and hard.  :-?  It's been pretty damp around here lately, though, so maybe I'll get lucky this weekend!  ;)

I seriously believe that the use of Melatonin in combination with LSD/Psilocybin has made a significant difference to the busting of my cycle. Neither of the psychs were stopping the night-time headaches, which were much worse than daytime, because of the cold, lack of sleep and loneliness.

Taking 3mg Melatonin every night when I began the busting schedule had an immediate effect -  I stopped getting the night time headaches within a week, and for the first time in years began to get proper sleep, which at least gave me more strength to deal with the daytime ones.
Which suggests that for me at least, a Hypothalmic malfunction may well be the cause. I did also suffer from an overactive thyroid a few years ago, which whilst probably unrelated to the CH, fitted in with my generally 'amped-up' physiology. Ironically it was my thyroid specialist who prescribed Sumatriptan, as he actually knew more about CH than any of my GPs had!

However, I should repeat that it took a few years of testing before I got the sequence right. As I only get CH between September and December, there's obviously a long wait time before trying again, and although that's a pain-free nine months, the feeling of dread as the season loomed often outweighed the lack of pain. And failure to hit it was very frustrating, though the definite decrease in frequency and intensity made it definitely worth persisting.

The main benefit I've found through a weekly small dose is just a general 'tonic' effect, often remarked upon in literature, but rarely touched on now. As it's too small a dose to really alter behaviour, but enough to put a 'gloss' on a mood, I've actually found myself throughly enjoying things I would normally find a little dull, and managing social/personal situations better I feel, through the extra clarity and depth of perception it gave me, than I might have 'straight'.

As I mentioned, I consider myself a 'veteran' user of psychedelics, and have always been concerned that the intensity and 'quality' of the experience remain paramount, and so was always sceptical that regular low doses were of any use long-term.

Had I not suffered from CH I might never have made that link, but it still seems ironic to me that Albert Hoffman was searching for migraine remedies when he first synthesized LSD, and even then, wildly over-estimated the dosage. Had he taken ten time less than he did, and discovered the cure for cluster headache, but not had a psychedelic experience, how different might the world have been?

Would there still be a Summer of Love, I wonder...?

That's an interesting thought- yeah, what if they had pegged it as a cure before they realized the potential for hallucinatory effects?  Of course, eventually somebody would have figured it out, but maybe it wouldn't have been lost as a treatment option...oh well, we'll never know!!  :D

Wondered if anyone had any thoughts on the angina/CH remission issues? I have an appt. booked for later in the month to do a treadmill/ECG test, so should get more info then. However, in the last two weeks, and especially in the last week, I've had almost complete cessation of the 'angina' symptoms. I've been taking a daily aspirin as suggested by the GP, but could it really have that dramatic an effect already?

Anyway, here's the abstract of the article I found that piqued my interest in angina and CH:

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

We report on eight patients with episodic CH and coexistent effort-induced angina pectoris. Cases 1-6 had been free of their headaches for many years but got recurrence of CH within a few weeks after the administration of long-acting organic nitrates (isosorbide-dinitrate, isosorbide-5-mononitrate or slow-release GTN) aimed at treating their chest pains. These nitrate-induced headache periods were more severe and had a longer duration than the previous spontaneous ones. Furthermore, one of the subjects and two additional cases experienced a marked reduction of their anginal attacks during successive CH periods.

ttt

[size=18][/size]I think that I will wait until the FDA approves hallucinogenics before trying them.  There are very valid reasons that LSD, etc., are illegal and until they are legal and are a proven method of "curing" CH, taking psychodelic drugs can have some very serious medical problems-I think that the 1970s proved that.  I agree with you 100% Michael.

Patiently Waiting,

HSJones wrote on Mar 16^th, 2009 at 8:31am:

[size=18][/size]I think that I will wait until the FDA approves hallucinogenics before trying them.  There are very valid reasons that LSD, etc., are illegal and until they are legal and are a proven method of "curing" CH, taking psychodelic drugs can have some very serious medical problems-I think that the 1970s proved that.  I agree with you 100% Michael. Patiently Waiting,

yeah i can understand that. i think timothy leary gave the use of psychedelics a bad rep witch is a shame because it's highly effective.

it seems to me that with all the complications that come from legal drugs lsd and mushrooms are physically healthier. think about all the heart problems associated with imetrex  and that's only a temporary fix. if your clinically depressed the lsd could be a bit much. but with the mushrooms you don't have to use enough of the to "trip" and even at a low dose it still works. i can't comment on the seeds i've never used them.

yes this treatment is illegal but is legitimate. besides that i refuse to recognize laws created by lobbyist paid by drug companies so the they can keep selling you drugs that just kinda work and what they continuously charge for imetrex so you can get some temporary relief is disgusting.  

Yikes! Some thread...

FWIW, I shortened my last cluster (October 97?) just after "mid-term" with RC seeds. Had a whopper the day after dosing...but could tell something was going on.

Just starting a new cluster, and hit it with seed tea last Sunday. Nothing till today and I'll dose again in an hour or so. Will the seeds be the savior for me? Way too soon to tell, but I can find no reason not to try--since I am immoral and unethical and criminal.

I know this is true because there is a little hand-written note on the legally purchased 1000 seed packet saying "Not for human consumption." ;)

FTR, Bob, your original post was not at all abrasive, quite the opposite,  and it's great to see all the supportive posts. Whether the seeds do the trick or not I would like to publicly give thanks as well. You gently and succinctly answered my 1997 emails apparently simply out of the goodness of your heart. Pretty sure I know what do do this time around--if my seeds from a 18 months ago are still good...;)

(and I've ordered a O2ptimask as well--O2 works wonders for me as does exercise)

Your work has probably helped more people in more important ways than anybody I can think of. Of course, I hang out with fellow criminals, so you don't have a lot of competition, but still...;)

Cheers,
Kirt

Oops...I meant October 2007, not 97...

Kirt

Hi all,
I read a little on this subject back last year but put it to the back of my mind because although I do have a problem with illegal substances I was newly diagnosed after about 14 yrs suffering and hadn't even been given 02.  Since then i have tried verapamil which turned me into a zombie with a killer headache on top of my CH and migraine.  I was supposed to get a flu jab and turned up at the docs and they refused to give it to me and then admitted me, I was in such a shape!  Now I'm on Epilim which has reduced the attacks that last for days on end.  However I still get kip 5 or 6 pretty much every day about tea time and a kip 8 or above once a week.  i use 02, sumatriptan tablets and injections.  I tried cold showers, hot showers, energy drinks, coffee, can't even contemplate exercise and cannot leave my bedroom.
I recently came off the Epilim as Inhave outlined in my recent post entitled contraceptive link. The beast pounced and I realised I need the Epilim to cope.  However I still am like a zombie every night.  I'm fed up of missing putting my little lad to bed and being able to help my 16 yr old with her GCSE revision etc.  I cannot hold down a job as it stands and am feeling worthless.  As I said the Epilim is approx halfing it so I do feel lucky to a certain extent...and feel guilty in a way that I want to feel better.  I feel that I have fought hard to get this much relief so maybe I should just accept and be grateful.  Or maybe that's my excuse for not having the guts to try the seeds etc?  
I am so interested in this and believe people have relief and wish I could make myself try it.  My main problem is that it's illegal.  Most of the posters here are in America and I read that some states have it legal for meds, that's not so here in the UK.  Although in my area I'm pretty sure I could get it easily.  The other problem Im have is that my ex was a regular user of cannabis, mushrooms, and it ended badly because of his paranoia, violence etc.  Also my mother is a drug addict, I have seen her in some terrible states, high, suicidal, she's bloated, her teeth have fallen out from rubbing drugs in her gums, suffers from bad vomiting and gets hospitalised, and she's a morphine and methadone addict.  I know some will point out that seeds and shrooms are not the drugs my experience is with, but in my head I just see a title of illegal drugs and think of the state of my mother.  I kinow if I took the step to take seeds or shrooms to help my CH I wouldn't be the same as my mother but I have a massive hurdle to jump in my head.
As soon as I finish this post I'm going to clusterbusters to re read the info.  But I am so scared to take this step yet so eager.
x

well you don't have anything to lose. it doesn't show up in a drug test at least non that i've taken and i'e taken over 100. if you do it be sure to research clusterbusters.com for best results. about 2 weeks after you bust no more ch. i,ve been pain free for over a year now.

Howdy Folks.

Been a while. I just had to make a post here. I started reading the clusterbuster site a few years back and one day a couple years ago i said what the hell, and ordered some spores.  I grew them in my basement cellar, dried them and vacuum packed to be saved for my next cycle.  a few months later i was having, what I believe to be shadows. I went straight to the mushrooms and grapped one small cap, chewed it up and that has been it for ch for almost two years now. I just keep doing that same thing. If i feel the slightest bit like i am having a shadow, I eat 1 small peice. To this day i may have had to eat them maybe 5 times.  There is definately something to this. I was an imetrex junkie till now! No more 4 vials a day.  

It may be illegal, but who the hell cares. If it works. If they made imitrex illegal, would you stop using it if you had access to some?

Just my opinion.     Can somebody from clusterbusters drop me an e-mail when they get a chance I have a quick question.


Chris

I was also an imitrex junkie before rc seeds.  I know the imitrex was causing rebounds and making the pain worse as time went on.  Since detoxing from all meds and relying only on rc seeds and 02, I have been mostly pf.  Still get the occasional k-6 or 7 and some shadows, but I can live with that.  

Beth :)

Im kinda going  thourgh some of the same things beth. I get shadows from time to time, I do my seeds every six weeks or so and i have not gotten 1 hit above a small kip 6. I truely hope this is the anwser for me. ( knock wood, Wait, where's some wood? Where's the GOSH DARN WOOD!!?? someone please give me some wood.) :D

                                           Coach Bill

when i first started reading this thread, i was a little disturbed. a read the first couple of pages before my eyes started to hurt, lol. anyway, i just wanted to throw in my two cents worth.

just to get things out there that might have been over looked, i want to add this -

acid has the potential to change your life for the worse as well!

i did a lot of it and used to be a whole lot smarter before doing it. not to mention is has the potential to really mess up the way you view life and your perception of reality. i have no problem with people trying to find new ways to get rid of their CH's but they really need to fore warned about the possible non reversible side affects of this drug!

just as an example of my point here - i used to be way smarter than my sister "way smarter!". (no offense, sarah - hehe) a few years back, she graduated form berkley(with honers) with everything she needed to get into medical school she decided to be done with school and went another route. ok, so now i work in a saw mill with out even a high school diploma. i always wanted to engineer or something like that. now i can barely hold a thought long enough to do what i'm told at work... not even to mention that time i never really came back after dosing.

edit - i think i know what i'm going to after the next time i go to the coast. how the hell am i going to explain the is my wife? honey - we've goota stop by the square and pick up some shrooms, ok? - they'll help w/ my CH's...

Hey josh,

Not sure if its the same for everyone, but when I use them, the amount is so small that I feel absolutely no effect from it at all. And from what I've read there should be no need to take near the amount a recreational drug user would to get the "HIGH" from it.

Chris

josh wrote on Mar 26^th, 2009 at 8:48pm:

i used to be way smarter than my sister "way smarter!". (no offense, sarah - hehe) a few years back, she graduated form berkley(with honers) ...

I used to be a lot smarter than my parents. Then I grew up.

You obviously weren't smarter than your sister if you burned yourself out on too many acid trips. Plus, and I'm just guessing, that acid wasn't your only form of recreation.

Just sayin.... ::)

Using psychedelics to treat clusters in not at all like using it recreationally. The doses are normally less than 1/4th of a recreational dose. The doses of seeds used is probably more like 1/20th.

That said, considering your history and current state of mind, I would suggest you NOT even try the lower doses to treat your clusters.

Bobw
P.S. ClusterChris...please ask your question here or feel free to send me a PM....or email.

I got Chris on a PM
Us Canadians gotta stick together.  'Eh.   :-)

Doug

I have never even felt the slighteset twinge of a "trippy" feeling from dosing with seeds.  I always dose right before bed and sleep like a baby.  The side effects I experienced from Rx meds is an entirely different story.  I'll stick to seeds and 02.

Pinkfloyd wrote on Mar 26^th, 2009 at 11:46pm:

josh wrote on Mar 26th, 2009 at 8:48pm: i used to be way smarter than my sister "way smarter!". (no offense, sarah - hehe) a few years back, she graduated form berkley(with honers) ... I used to be a lot smarter than my parents. Then I grew up. You obviously weren't smarter than your sister if you burned yourself out on too many acid trips. Plus, and I'm just guessing, that acid wasn't your only form of recreation. Just sayin.... ::) Using psychedelics to treat clusters in not at all like using it recreationally. The doses are normally less than 1/4th of a recreational dose. The doses of seeds used is probably more like 1/20th. That said, considering your history and current state of mind, I would suggest you NOT even try the lower doses to treat your clusters. Bobw P.S. ClusterChris...please ask your question here or feel free to send me a PM....or email.

well, guess it goes to show i didn't know the whole story before i posted. i was under the impression that you actually needed to do more to achieve the desired effect.

edit x2 - sorry guys, i read a lot more on the subject and now have a completely different opinion.

on another note, has anyone heard of someone getting busted for trying to treat their CH's? lol

[quote author=4E4D4551544F4A1619210 link=1212882305/292#292 edit - wait a second, you guys are making this stuff? watch out for the feds![/quote]


uh no... not me.... I think you should go to the clusterbusters website and read a little more to gain a better understanding.  I am not sure you have it quite yet.

Kelly

mezza wrote on Mar 27^th, 2009 at 11:09pm:

[quote author=4E4D4551544F4A1619210 link=1212882305/292#292 edit - wait a second, you guys are making this stuff? watch out for the feds!

uh no... not me.... I think you should go to the clusterbusters website and read a little more to gain a better understanding.  I am not sure you have it quite yet.


Kelly[/quote]

see above 'edit'

Treatment with Psilocybin has been the most effective, least expensive solution I have ever found for dealing with Cluster HeadaCHes.

im a little late on this one.....after i read that shroomz worked keeping the beast at bay we found chris some shroomz. we ate them and ive had like 4 hits since then. i feel if i dose again i will knock this one out. last year i ate shroomz for 4 months, just for fun, and i didnt have a cycle. this year i had a cycle start and i aborted it with 1 dose 3 months into the cycle. after all ive been through, im sold on the shroomz. i never want to take another pill as long as i live. besides, my body cant take anymore. clusterbusting is the way to go in my opinion.

I just started a new post extolling the virtues of the R.C. Seeds. Sorry, i should have read more forst  and I would hve seen this long wondeful thread.

The RC Seeds worked for me. I had some shadows 2 weeks ago, dosed and they left. I have some mild shadows today so Im gonna dose again. I use 50 seeds. I do not get high. I do not hallucinate. I do not dress up in a wig 7 a sundress and sell my body to get money to get more seeds. It does not turn me into a foam at the mouth junkie. It gives me relief from the most horrible torture I have ever experienced in my life. I do not feel immoral, nor criminal. I feel blessed that this treatment has worked for me and thank God 7 all the other clusterBusters who have shown me a way to help myself!!!!

I can and will stand up and be counted.  Here's my story, not unlike many before me.  I spent 14 years of my life a chronic.  I tried every possible remedy suggested by the 4 neurologists, 2 pain management Drs., 1 anesthesiologist, 2 different styles of acupuncturist, internists etc.   I visited.  There were so many prescriptions I actually lost count and sadly, the only relief, a temporary one at that was the prednisone.  We all know that party must end almost as soon as it's started. I was at my wits end when I went for the Occipital nerve block. The first one didn't work though the crunching under my scalp was an interesting experience, the second time (was I crazy to try again) I was injected with Botox. Again, no luck.  It was on this board approximately 2 years ago that I saw mention of Dr. John Halpern, research using psychedelics as a preventative remedy. I did contact Dr. Halpern and was introduced to Clusterbusters.  Here's the facts, I was scared to try mushrooms, I was worried about the legalities, at the time I had teenage children at home, my wife councils children in the high schools system with drinking and drugging problems, I could see all the reasons not to try, but I was sick, real sick with cluster episodes 4-6 times each day.  The quality of my life was gone and when I wasn't in excruciating pain I was worked up and worried knowing my next cluster was soon to arrive.  Sound familiar? Frightened and wondering if I could actually last a week with out any medications I bit the bullet had one of the worst weeks in my life and started the mushrooms in low doses. It took 4 doses, each 5 days apart before I showed any signs of success.  First I passed a time where I always had a cluster, then a day and on and on until I went 4 months pain free.  Interestingly, I broke a finger and that physical stress brought on a cycle.  I made some mushroom tea and again, after a few doses I was headache free.  I now am on a maintenance program and the clusters stay away.  No more trex injections, prednisone or blocks.  Oh and by the way I did discuss this with the family and there response was clear... they would rather I try anything including breaking the law than to watch me bang my head, scream and cry, pull my hair out and think of ending it all.  Good luck to all of you that read this message, perhaps mushrooms are worth try.

We are most happy to stand up and be counted.

Over many years Blake has taken dozens of drugs, both preventative and abortive.  He felt they were slowly killing him and I believed it.  The clusters were terrible but the drugs were stealing his soul.

He went into remission for a couple years.  This was after 15 years of being chronic........then they came back.

We decided it was time for the alternative.  We did our homework and asked a lot of questions.  We had a lot of help from some very learned people.  Thanks to you all.  Then we started the dosing routine.....8 doses to date.

It is by far the BEST thing we've ever done for a treatment.  The beast still lets us know he's hanging around but it's NOTHING like before.  Blake runs his ass (the beast) off with a few snorts of miracle 02, coffee or energy drinks.  Our plan is to keep dosing the SOB until we totally stomp him (to quote a friend).

I know this isn't for everyone, for different reasons,  but it's been a miracle for us.

Life is good   :)

Love and PF Wishes to you all...
Jackie

Jackie wrote on May 1^st, 2009 at 8:45am:

We are most happy to stand up and be counted. Over many years Blake has taken dozens of drugs, both preventative and abortive.  He felt they were slowly killing him and I believed it.  The clusters were terrible but the drugs were stealing his soul. He went into remission for a couple years.  This was after 15 years of being chronic........then they came back. We decided it was time for the alternative.  We did our homework and asked a lot of questions.  We had a lot of help from some very learned people.  Thanks to you all.  Then we started the dosing routine.....8 doses to date. It is by far the BEST thing we've ever done for a treatment.  The beast still lets us know he's hanging around but it's NOTHING like before.  Blake runs his ass (the beast) off with a few snorts of miracle 02, coffee or energy drinks.  Our plan is to keep dosing the SOB until we totally stomp him (to quote a friend). I know this isn't for everyone, for different reasons,  but it's been a miracle for us. Life is good   :) Love and PF Wishes to you all... Jackie

SWEET!
I hadn't talked to ya'll for a couple of weeks and was wondering how Blakes head was doing. This is great news Jackie, you made my day!.   [smiley=sayyes.gif]
Here's to hoping Blake drops that MF like a bad habit once and for all. [smiley=me&mb.gif]

Thanks, Jim..... :-*  You noticed I quoted you with the 'stomp him'... ;)

Take care and love to you and Sue.

Jackie

Goodness what a popular topic.

Been away for ages and am so delighted to see Bob still doing his thing and the momentum and professionalism it's gathering.

Reason I've been away?

Same reason I'm delighted Bob's still doing his thing.  Thank you.

Bobw.
Thanks for a very interesting post. I notice that all you are trying to do is help fellow clusterheads by sharing what you have found to be an effective treatment.

Unlike some in our community I don’t give a damn whether the legislators deem a medication legal or illegal. If there is a possibility that it can relive our suffering I will obtain it and trial it.

Guys we suffer from the worst pain the human body can endure, other humans when reaching levels of pain far below what we experience will pass out, or in some cases die from shock, one of the peculiarities of our condition is that we can do neither. In fact one danger of being a clusterhead is on the operating table; The beast will wake you up whilst anesthetised. Imagine waking to a Kip 10 during a kidney transplant, on second thoughts don’t.

And despite this some of you are against trying what could be an effective treatment, because it’s illegal in your country?

What is illegal is the misuse of certain medication (Drugs) this is for the protection of those who would abuse these, and those who would be affected adversely by substance abusers.
What I find strange is that when a medication is deemed illegal, due to misuse, the ban is draconian in that it also affects usage as a genuine medicine in the treatment of ailments. Look at the furore surrounding the trails of medicinal marijuana.
This means that drugs which help to alleviate certain conditions are dismissed out of hand because they fall into the illegal category, thank God Morphine was used as a legitimate pain killer, before it was abused or else that may have been banned too.

Well Clusterbuddies this is one guy who is not going to let the ignorance of blind judiciary stop me from dealing with the beast.
Bobw is not advocating Muti medicine or human sacrifice, just trying certain meds which have been stigmatised by a few weak minded idiots misusing them.

My experience; I have tried mushrooms (we call them magic mushrooms) and  LSD (under medical supervision), and Bobw I am one of those it failed. In desperation, and for a last attempt I stupidly  took 6 acid tabs, I started with the green glowing outlines, went very trippy happy had an attack and  hit my kip 10. The beast asked me what did I think I was doing and gave me a damned good kicking. I was just left with the after effects, which were similar to whiz, so no sleep afterwards which I found rather irksome. So endeth another trail…….

Hey Doc, you probably did it wrong! ;)

bobp
Only at the end.
My trail was supervised; I may be crazy, but i'm not insane.....Yet.

Just a little inside joke I've got going with BobW.  Sorry to hear it didn't do the trick for you.

Yikes!  Is this true that Clusters break through anesthesia?  I hadn't heard about that!

wow,  look at all the times this post has been read.  amazing!!!,  Busting didnt work for me,  but I was unable to get off of all of my other meds before I tried it.   I would try it again in a heartbeat though, if I didnt have to take anti seizure drugs.(they seem to block the effects for me)

The success stories are wonderful, and very uplifting. :D :D :D

christinew

chrisw wrote on May 13^th, 2009 at 10:59pm:

The success stories are wonderful, and very uplifting. :D :D :D christinew

Yes, and it's also good to hear from those that weren't successful, as thats how we can learn.
The more we learn, the higher we hope to get the success rate.

Sorry it didn't work for you Christine and Dr.Mike. Thank you for your contributions.

As our research expands, hopefully we'll come up with some new alternatives. Maybe even something for BobP ;-)


Bob

sylverstar wrote on May 13^th, 2009 at 5:29pm:

Yikes!  Is this true that Clusters break through anesthesia?  I hadn't heard about that!

Yes, ch did break through the anesthesia during my surgery to remove my thyroid.  It was like dreaming the ch pain, but I could not wake up.  The surgery was supposed to be as an outpatient, but since they had such a hard time getting me to wake up after surgery, they kept me overnight.  I'm sure it was all due to me being in high cycle and as sleep deprived as I have ever been.  Unfortunately, in the hospital, they love to wake you up just to give you a sleeping pill or shot for pain.  >:(

Beth

Sorry to go a little off topic here. (maybe a new thread is needed).

One of the problems about CH and anesthesia is that when we do wake during an op' the doctors do not know what the hell is happening, they take our pain fueled thrashing as a seizure caused by an  anaesthetic problem. So unfortunately these incidents do not get logged as CH, and it's a bit difficult telling them when you are dead.
When going in for surgery we need to declare this condition and warn the operating team of the possible occurrences. As we can predict our attacks surgery can be scheduled between these.
MIke

Quote:

As we can predict our attacks surgery can be scheduled between these.

Mind if I give you a call the next time I have to go under the knife? You can help me figure out what to tell the surgeon.

Brew wrote on May 16^th, 2009 at 3:01pm:

Quote: As we can predict our attacks surgery can be scheduled between these. Mind if I give you a call the next time I have to go under the knife? You can help me figure out what to tell the surgeon.

yeah i'm the same way. my attacks don't follow any kind of schedule though some of us do. ive never had an attack break through while busting though. perhaps in the future busting will become legal and can be used along with anesthesia.

Bump  ;)

I haven't tried yet the method but another sufferer from Poland who I told about this method tried Morning Glory seeds so far 2 weeks painfree, so another one to stand up and be counted.

EDITED BY MattyAA:

Actually it was product called Druid Fantasy, capsules that contain Morning Glory, Magnesium, Taurine to be precise, he took first 2 capsules (recreational dose is 6 capsules) 1 capsule at begining and second 1 hour after, his hits from 1.5 per day turned into 1 per two days and the pain level was lower, after 5 days (Since he used tips from cluster busters) he dosed 4 2 at time then 1 hour later 2 another, this time he felt nausea and a bit heavy as he described, but his hits stopped from occuring, he did trigger test and nothing happened, he will soon make an account here and say his story hopefuly, as I asked him, I will try also together with him to make this method more popular in Poland, but for that we need to translate articles and for that we need agreement from all doctors and Bob Wold and others who contributed to the case.

Three years and 7 months now pain free with only a few minor breakthroughs using precision dosing with RC (Rivea Corymbosa) seeds.

34 years to find a life without pain. Its amazing I used to think it was only a fantasy to be able to live this way as since the age of 17 I had not experienced life without some aspect of the beast in it.

I still remain alert to every little twitch in my head and continue to wait  to be hit again but the hits never come because I have licked the beast every time and hope I will continue to do so. Life is good.

Quote:

I haven't tried yet the method but another sufferer from Poland who I told about this method tried Morning Glory seeds so far 2 weeks painfree, so another one to stand up and be counted. EDITED BY MattyAA: Actually it was product called Druid Fantasy, capsules that contain Morning Glory, Magnesium, Taurine to be precise, he took first 2 capsules (recreational dose is 6 capsules) 1 capsule at begining and second 1 hour after, his hits from 1.5 per day turned into 1 per two days and the pain level was lower, after 5 days (Since he used tips from cluster busters) he dosed 4 2 at time then 1 hour later 2 another, this time he felt nausea and a bit heavy as he described, but his hits stopped from occuring, he did trigger test and nothing happened, he will soon make an account here and say his story hopefuly, as I asked him, I will try also together with him to make this method more popular in Poland, but for that we need to translate articles and for that we need agreement from all doctors and Bob Wold and others who contributed to the case.

Hello everybody. I'm new here. I'm 39 years old. I have been episodic for 12 years. It's me that Mattyaa wrote about.
Yes, count me.
The period lasted 8 weeks, average 1.5 attacks / day, average kip 7. It was longer than before so I decided to try something different. My choice was RC seeds (or HBWR seeds) but these are unavailable in Poland. The only legal choice was Druid Fantasy containing LSA. It is legal for collecting purposes.
First dose (2 capsules) caused none psychedelic effects, the only effect was reduction of pain to 0.5 attacks / day kip 2.
Second dose after 5 days (4 capsules) and again no psychedelic effects with some nausea and heaviness. But the best is that I've been pain free for 3 weeks. And there is still no pain at all.
Bless the day I've found clusterbusters.

Like MJ, I too am over three years pain free with rc seeds.

I dose about every 60 days with just 12 seeds as maintenance.  If I get the slightest inkling that something is trying to happen, I dose with 35 seeds immediately and wait.  If no more tickles, back to the maintenance doses.  If the tickles continue, I dose again, five days later, with another 35 seeds.  The tickles always stop.

Over these three years with this method, I have had only four breakthrough hits, in the K5 to 6 range, each one easily aborted with O2.

This has changed my life.

Thank you Clusterbusters!

Sandy

Sandy_C wrote on Jun 18^th, 2009 at 2:44pm:

I dose about every 60 days with just 12 seeds as maintenance.  If I get the slightest inkling that something is trying to happen, I dose with 35 seeds immediately and wait.  If no more tickles, back to the maintenance doses.  If the tickles continue, I dose again, five days later, with another 35 seeds.  The tickles always stop.

Wow!  I guess I can tone it down a bit.  I've been eating around 60 seeds every month as maintenance.  I guess I can try cutting it back a bit,  ;D.  Once I hit mid August, i'll be exactly 1 year pain free.  Without rc seeds, I was good to have about 2 cycles per year lasting anywhere from 2-7 weeks each.  These seeds are my savior up to this point.  I keep shrooms in the freezer as back up.

Like Sandy said, I had a little
tickle the other week and busted that night and nothing has happened since.

I guess I just do too much in quantity.  The nausea is worth being PF.  I'm going to cut back to 25 or less each month.

BEASTLY TIMES GAZETTE

Changing Era, Sad Ending, Travel Warning


Detroit - A boisterous crowd of scavenging gulls setting upon the Detroit River as it was making its way into Lake Erie attracted the curiosity of a nearby boater.  The passing view prompted a 666 call bringing beast homicide forensics to the scene.  It was one of our very own.
 
Autopsy reports revealed a gruesomely brutal and prolonged torture, while signs of a proud and mighty struggle also appear before a vibrant life was dumped from shore in the night.  The victim's broken bones, partially mended were heartlessly rebroken again and again.  Still discernable neck marks have signs of strangling to near unconsciousness and upon reviving, beaten again to a constant edge of death before the eventually succumbing end.  

The area in east Detroit had been a popular vacation romping site of unabandoned beastly freedom.  Lately though, it has taken on a very seedy atmosphere. ;) Remembered times circulated to keep this beast resort a habitual favorite many years.  

The avidly frequented, fun-time, tough and rumble bar scene took on a sudden uneasiness.  Interviewed last night, a last lingering beastly patron remembers, "Before I could finish my first beer I sensed an echoing sound like a beating heart coming from the floorboards.  A vision of being sealed alive in the wine cellar was felt like a shuddering, eerie wave.  I got the hell out."

"Wadded prescription receipts with a cocoon were stuffed in the victim's throat, signs presuming this person was seeking change", said inspector Beastbutt. "This person took their time, I'd estimate since April, and, curiously perverse, the liver was not intact."  A travel warning issued by the beast state deparment is now in effect while a deranged Lecter-like suspect may reside in the vicinity.