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dougchunyo
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Want to try Mushrooms
« on: Feb 25th, 2005, 11:24am » |
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Hi All,
My last episode was two years ago, and they are back. I have tried all conventional medical therapies over the years, and none have really worked.
This time around I want to try the mushrooms, I am seeing some very promising anecdotal evidence on the web and think it's time to try this as treatment.
Does anybody know how I might get some?
I live in North East Ohio, any suggestions would be appreciated.
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JJA
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Re: Want to try Mushrooms
« Reply #2 on: Feb 25th, 2005, 12:05pm » |
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Spores are legal to buy online in Ohio (for microscopy  ). The rest is up to you. Like Nani said www.clusterbusters.com will have good information. Here's a site of a guy that stopped by recently.
www.RalphstersSpores.com
Jesse
Edit: spelling
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| « Last Edit: Feb 28th, 2005, 10:07am by JJA » |
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Is it illegal because it's dangerous or is it dangerous because it's illegal? Our drug laws are ruining lives.
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dougchunyo
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Re: Want to try Mushrooms
« Reply #3 on: Feb 28th, 2005, 9:01am » |
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I've read the info on Kudzu, but most of what I see related to CH appears here only. Information on mushrooms appears in a variety of sources. Seems to still be too new a concept for there to be much info available.
However, I am looking around and will likely try it as well.
For my HA's, I can generally find something that will work ... for a while then the effectiveness wears off. In the past, (when I was young - around 14 - 16) an otc sinus headache remedy would work. By the time I was 18 it wouldn't work any more, so I got glasses, and the HA's went away - coincidence or was eyestrain a trigger during an episode? Who knows, who cares.
I was a medic in the Air Force from 18 - 22 and used Benadryl, Norgesic, and/or Donnatol all were useful for a time.
After leaving the service it was on to a double dose of asprin and tylenol (a trick the doctors told me about, you can take a full dose of each without causing problems.) No effect at all. Then it went away for a number of years.
It started back up about 10 years ago so I went to a Neurologist after self diagnosing by doing research on the web. He verified that they were CH's and I tried Imitrex - that worked for a while too.
This past weekend, after a fruitless search for 'shrooms, I got something called "Migracin" from a healthfood store. It has: Feverfew 4:1 extract 50mg, Certified Potency White Willow Bark Extract (standardized for 15% salicin) 30mg, White Willow Bark Extract 300mg, White Willow Bark 200mg, and DLPA (di-phenylanine) 250mg.
That seems to be working for now too.
Still looking for the 'shrooms though. I am pretty sure once the HA's figure out what I am taking these will loose effectiveness too. It seems almost like a living thing.
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Pinkfloyd
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Re: Want to try Mushrooms
« Reply #4 on: Feb 28th, 2005, 9:33am » |
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on Feb 28th, 2005, 9:01am, dougchunyo wrote:| Still looking for the 'shrooms though. I am pretty sure once the HA's figure out what I am taking these will loose effectiveness too. It seems almost like a living thing. |
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I suggest, while you're looking, and while the migracin is helping, get what you need and start growing fungus.
Bobw
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miapet
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Re: Want to try Mushrooms
« Reply #5 on: Feb 28th, 2005, 2:28pm » |
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I have to agree with PinkFloyd, while you have some relief, start your farm! Have everything ready and then use them! I can understand the fear of it only working for a little while . . .but I can't believe that . .. and the longer D is p/f the less I have to believe it . . .
If you really think you can pick some up there (seems too cold up there right now to me . .. ) . . I would check in Amish country (maybe between cleveland and cols, or farther east . . .)where they have cows in the fields *G* . . .but you really need to know what you're doing, so you don't poison yourself ... .
*positive light and energy*
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PCMCCK
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Re: Want to try Mushrooms
« Reply #6 on: Feb 28th, 2005, 2:57pm » |
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Be careful about taking anything where the only proof is änectdotal"evidence. One doesn't even know if the person reporting the "evidence" actually has cluster headaches.
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vig
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Re: Want to try Mushrooms
« Reply #7 on: Feb 28th, 2005, 3:08pm » |
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on Feb 28th, 2005, 2:57pm, PCMCCK wrote:| Be careful about taking anything where the only proof is änectdotal"evidence. One doesn't even know if the person reporting the "evidence" actually has cluster headaches. |
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Also be careful about taking what the doctors are prescribing... (prednisone, topamax, etc.)
educate and empower yourself and make wise choices.
just another successful anecdote...
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dougchunyo
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Re: Want to try Mushrooms
« Reply #8 on: Feb 28th, 2005, 3:08pm » |
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Miapet and PCMCCK:
Very good advice both. I have a friend who lives in Western PA, the heart of Amish country, who is very knowledgeable on the subject. I also have a friend in SF who may be able to obtaine some cubensis. But there are always risks in doing things that way.
Nearly all the evidence on unconventional treatments here is anecdotal, even the migracin I've been taking may only be "working" by coincidence. I like the thread Nani linked to here, they are trying to put some hard evidence together on Kudzu.
I am following that one closely too, but the idea of the kudzu for CH seems pretty new. At least mushrooms have attracted one study at Harvard, and I have heard the talk for years now.
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JJA
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Re: Want to try Mushrooms
« Reply #9 on: Feb 28th, 2005, 3:12pm » |
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on Feb 28th, 2005, 2:57pm, PCMCCK wrote:| Be careful about taking anything where the only proof is änectdotal"evidence. One doesn't even know if the person reporting the "evidence" actually has cluster headaches. |
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Well, in this case it's STRONG anecdotal evidence gathered by people we at ch.com know (we are quite certain "they" have CH).
I am a scientist and know that science is great for getting results, but it can be extremely slow. Mix in some government and we're at a snail's pace. Anecdotal evidence isn't necessarily bad evidence. In fact, it's what drives almost all scientific research.
Jesse
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miapet
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Re: Want to try Mushrooms
« Reply #10 on: Feb 28th, 2005, 4:34pm » |
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it was Buster drive and all of the anecdotal evidence they had gathered . . .that got Harvard to go for the study . . . .
PCMCCK, I would suggest you do a search of the archives here ... and read all of the posts .. ..if you don't think that the people discussing the shroom treatmetn have clusters, than you need to really re-read the posts. As for safety, what about the fact that the 'traditional meds' are off-label scripts .. .so who knows the efficacy . . .and don't forget all those awful side-effects.
*positive light and energy*
miapet
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PCMCCK
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Re: Want to try Mushrooms
« Reply #11 on: Feb 28th, 2005, 10:15pm » |
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I urge caution because desperate people will sometimes try things that can be dangerous and also allow themselves to be taken advantage of by, what I consider, charlatans, such as those who sell various magnetic devices (which can cost a fortune and have no scientific basis) and taking homopathic substances, which were proven useless in the 19th century but are still widely used, particularly here in Europe; the substances themselves cause no harm except to the pocket book, but can cause harm if one does not go to a medical doctor for a condition that persists. While conventional medicine has not come up with any one treatment method that helps all CH sufferers and does lead to frustration, just be careful when you start taking substances that have no more proof of working than "someone told me". I agree that one must educate oneself on any treatment, medical included-I almost allowed myself to have deep brain implant surgery and ONSI surgery until I discovered that the failures of both of those treatments were not being published by the medical community in Europe. Regarding hallucinogenic mushrooms, is their a way that one can test the quality of the mushroom, the amount of psilocybin in each mushroom, how much one should take, how often, side effects, etc.? I think that those are reasonable questions that those who use "alternative" treatments should have answers to before recommending such treatments rather than just saying "try it" because, particularly with hallucinogenics, damage can be caused. Just because your Harvard is going to do a study does not mean that the method is valid-why not wait until the study is done?
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vig
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Re: Want to try Mushrooms
« Reply #12 on: Mar 1st, 2005, 12:00am » |
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on Feb 28th, 2005, 10:15pm, PCMCCK wrote:| why not wait until the study is done? |
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because if we all had just sat back with that attitude and waited for this to happen, it never would have....
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Mr. Happy
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Re: Want to try Mushrooms
« Reply #13 on: Mar 1st, 2005, 12:17am » |
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PCMCCK,
Why are you here?
RJ
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PCMCCK
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Re: Want to try Mushrooms
« Reply #14 on: Mar 1st, 2005, 12:53am » |
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Are not other points of view allowed on this subject or site? Does one not gain knowledge by asking questions? Did I write something offensive? Did I write something deragatory about someone or perhaps was I not following the politically correct party line. Perhaps I was mistaken in thinking that this was a forum for discussion. Es tut mir leid. Alle heil die Heilige Pilze! Nehmen Sie so viel Sie wollen!
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tommyD
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Re: Want to try Mushrooms
« Reply #15 on: Mar 1st, 2005, 6:46am » |
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Welcome PCMCCK -
Of course discussion should be welcomed. You have a skeptical attitude and no tolerance for what we call "snake oil," (magnetic bracelets and the like). You should fit in well here.
But the discussion on psilocybin and other indole-ring hallucinogens was held here long ago. No one jumped into this lightly, and the potential hazards of these substances are well known. Perhaps you have a point in that warnings should be made more often. So here it is: "People with schizophrenia, paranoia, extreme insecurity and some other mental disorders should not take hallucinogens, as there is the possibility of exacerbating existing mental illness."
I take this seriously. I have a friend who took one too many LSD trips in the 1970's when he should never have touched the stuff. It and the so-called "treatment" he was given after, ruined his life. But that's the only warning there is, as psilocybin and LSD have few other significant side effects, and are quite non-toxic. You may have heard otherwise, but there is a lot of politically-motivated "bad science" on this topic. Just one example: LSD and psilocybin do NOT cause chromosome damage as the US government has claimed.
A fellow we call Flash first proposed using LSD and psilocybin to treat cluister headaches here on this board in 1998. It took over a year of discussion and research before others tried it and reported their experiences. Those reports have been compiled and studied over the years since. Now we have close to 200 individuals who have reported, many in detail.
Conservatively, approximatley 80 percent of episodic CH sufferers who have tried it report significant relief. For chronic sufferers, the success rate is lower - 66 to 70 percent. Some folks think the success rate is a little higher.
Your concerns over amount and quality of psilocybin are justified, and this is one of the main topics of discussion regarding this treatment. The Clusterbusters try to control variations by growing our own mushrooms of a species where the psilocybin content is well-known. The Clusterbusters have also worked to find the minimum effective dosage for cluster headaches in order to limit the hallucinogenic effects as much as possible. Some people are successfully using doses so small ("the sip method" ) the hallucinogenic effects are minimal to none.
The reports and discussions on this board and among the Clusterbusters played a major role in convincing Drs. Sewell and Halpern at Harvard to consider study. There is also research dating from the 1950's and 60's, before LSD and psilocybin were made illegal, that shows much promise in the medicinal use of these substances for a range of physical and mental disorders, including migraine and alcoholism.
Believe me, if this were "snake oil," there would be a major conflict on this board every time it was mentioned.
Welcome again, please stay around. We are all learning here.
-tommyD
(edited for typos)
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| « Last Edit: Mar 1st, 2005, 6:57am by tommyD » |
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PCMCCK
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Re: Want to try Mushrooms
« Reply #16 on: Mar 1st, 2005, 6:50am » |
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I did not answer your question, Mr. Happy. I am here because I have had CCH for 25 years and am interested in learning from others. I am not here to put other people down because they may disagree with me nor to prescribe treatment. I will continue to ask questions and give my opinions and also read and think about those of others. I hope that this answer keeps you happy.
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dougchunyo
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Re: Want to try Mushrooms
« Reply #17 on: Mar 1st, 2005, 7:24am » |
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As a matter of fact, it must have been around '98 when I first started lurking around this board. I refrained from trying the mushrooms the first time because at that time, I too thought it was too new. (I may be overly cautious.)
As far as dosage goes, that's kind of the tricky part. I have my kids that get me high (figuratively), so that is not what I am looking for, but I do know that the things didn't do me any harm back in the '70's when I was trying to get high. So I think it will be fine.
Can somebody post a link to a good supplier of spores and supplies? It would be a really good idea after this discussion.
Thanks.
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miapet
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Re: Want to try Mushrooms
« Reply #18 on: Mar 1st, 2005, 8:51am » |
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tommyD, thank you for answering this thread in such a wonderful way. My emotions tend to run rampant, and (sometimes) I get a bit carried away *g*
In the 3rd post of this thread (JJA) has a link for spores. Ralphsters. Also, if you check www.clusterbusters.com many of your questions will be answered.
*positive light and energy*
miapet (supporter of 20 year CCH who has been p/f for 40+ weeks, thanks to fungus)
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PCMCCK
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Re: Want to try Mushrooms
« Reply #19 on: Mar 1st, 2005, 9:18am » |
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Tommy D., thank you for your answer. It is possible to legally purchase the mushrooms in The Netherland; would you please tell me about the various methods of using them and how much one should use (dried mushrooms), particularly the "sipping method" of which I have heard of before-I believe that one makes a tea from the dried mushrooms. Thank you.
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vig
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Re: Want to try Mushrooms
« Reply #20 on: Mar 1st, 2005, 9:22am » |
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Es tut mir leid. Alle heil die Heilige Pilze! Nehmen Sie so viel Sie wollen!
=
I am sorry
All hail the Holy Mushroom
Call me what you wish...
Wie geht's mein freund?
Being a skeptic is good....
Having CCH or ECH... bad!
I maintain that this 'alternative' gave me the best choices... the best health, the lowest cost, the least side effects. It's been known to be effective for headaches for decades, but is being withheld because of it's potential to be abused, not by headache sufferers, but by careless adventurers.
Alles Klar?
spater, bruder
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| « Last Edit: Mar 1st, 2005, 9:24am by vig » |
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JJA
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Re: Want to try Mushrooms
« Reply #21 on: Mar 1st, 2005, 10:56am » |
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dougchunyo,
One more time...
www.RalphstersSpores.com
on Mar 1st, 2005, 12:53am, PCMCCK wrote:| Did I write something offensive? |
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Unfortunately, you did. Many of us feel passionately about shrooms because they work so well where so much else has failed. They give many of us a level of relief incomparable to any other medication. In that way we get a little defensive, like you insulted our children. Sorry that you got "jumped on" for your opinion. I apologize for my part in that.
Your opinions and questions are welcome as are our's. We just have a difference of opinion in this case...unless...Check out www.clusterbusters.com for more information
Jesse
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| « Last Edit: Mar 1st, 2005, 11:06am by JJA » |
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PCMCCK
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Re: Want to try Mushrooms
« Reply #22 on: Mar 1st, 2005, 12:13pm » |
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Thank you JJA and Vig. I am a fellow sufferer of many years, chronic for 11 with daily pains hitting 10 on the pain scale several times a day, every day, so I can truely say that I know how you feel regarding the pain. I am also a health care professional and have seen patients who have damaged themselves by taking various substances because of their desperation or because they were conned, that is why I usually urge caution-I do not mean to suggest that the mushrooms are a con or necessarily dangerous and I feel the same way about medications prescribed by the medical establishment-I research anything that a physician wants to give me before I will take it. I hope that we can engage in mutually beneficial discussions in the future and agree to disagree at times. Thank you.
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miapet
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Re: Want to try Mushrooms
« Reply #23 on: Mar 1st, 2005, 1:53pm » |
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PCMCCK . . .go to the clusterbuster website www.clusterbusters.com and read the FAQ . . .among other parts. The page is designed to answer many of the questions you are asking tommyD. If you have some background and then need clarification or still have questions, then ask them .. .it will make it easier to understand and know what you need to ask more questions about.
*positive light and energy*
miapet
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dougchunyo
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Re: Want to try Mushrooms
« Reply #24 on: Mar 1st, 2005, 3:34pm » |
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Actually I am very glad I started this little thread. The vigorous manner in which so many have defended the mushrooms simply reinforces, for me at least, that these things have worked for many out there. I am reading some of the info on growing them. I just wish I had a green thumb!
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"The mind is its own place; and in itself can make a heaven of hell, or a hell of heaven."
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