Note:  Alternative users tend to be a little defensive.

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".

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


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    

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?

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

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?

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

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

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".

( 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.

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



                 

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?

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



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 ?

Quote:


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