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Title: Want to try Mushrooms Post by dougchunyo on Feb 25th, 2005, 11:24am 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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Title: Re: Want to try Mushrooms Post by nani on Feb 25th, 2005, 11:30am If you want info on the alternative treatment...www.clusterbusters.com is a good place to look. Here's a promising new treatment that's natural and legal... Be sure to read through the whole thread. http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1107368408 |
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Title: Re: Want to try Mushrooms Post by JJA on Feb 25th, 2005, 12:05pm 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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Title: Re: Want to try Mushrooms Post by dougchunyo on Feb 28th, 2005, 9:01am 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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Title: Re: Want to try Mushrooms Post by Pinkfloyd on Feb 28th, 2005, 9:33am on 02/28/05 at 09:01:29, dougchunyo wrote:
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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Title: Re: Want to try Mushrooms Post by miapet on Feb 28th, 2005, 2:28pm 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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Title: Re: Want to try Mushrooms Post by PCMCCK on Feb 28th, 2005, 2:57pm 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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Title: Re: Want to try Mushrooms Post by vig on Feb 28th, 2005, 3:08pm on 02/28/05 at 14:57:09, PCMCCK wrote:
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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Title: Re: Want to try Mushrooms Post by dougchunyo on Feb 28th, 2005, 3:08pm 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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Title: Re: Want to try Mushrooms Post by JJA on Feb 28th, 2005, 3:12pm on 02/28/05 at 14:57:09, PCMCCK wrote:
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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Title: Re: Want to try Mushrooms Post by miapet on Feb 28th, 2005, 4:34pm 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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Title: Re: Want to try Mushrooms Post by PCMCCK on Feb 28th, 2005, 10:15pm 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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Title: Re: Want to try Mushrooms Post by vig on Mar 1st, 2005, 12:00am on 02/28/05 at 22:15:01, PCMCCK wrote:
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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Title: Re: Want to try Mushrooms Post by Mr. Happy on Mar 1st, 2005, 12:17am PCMCCK, Why are you here? RJ |
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Title: Re: Want to try Mushrooms Post by PCMCCK on Mar 1st, 2005, 12:53am 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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Title: Re: Want to try Mushrooms Post by tommyD on Mar 1st, 2005, 6:46am 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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Title: Re: Want to try Mushrooms Post by PCMCCK on Mar 1st, 2005, 6:50am 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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Title: Re: Want to try Mushrooms Post by dougchunyo on Mar 1st, 2005, 7:24am 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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Title: Re: Want to try Mushrooms Post by miapet on Mar 1st, 2005, 8:51am 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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Title: Re: Want to try Mushrooms Post by PCMCCK on Mar 1st, 2005, 9:18am 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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Title: Re: Want to try Mushrooms Post by vig on Mar 1st, 2005, 9:22am 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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Title: Re: Want to try Mushrooms Post by JJA on Mar 1st, 2005, 10:56am dougchunyo, One more time... www.RalphstersSpores.com on 03/01/05 at 00:53:04, PCMCCK wrote:
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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Title: Re: Want to try Mushrooms Post by PCMCCK on Mar 1st, 2005, 12:13pm 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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Title: Re: Want to try Mushrooms Post by miapet on Mar 1st, 2005, 1:53pm 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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Title: Re: Want to try Mushrooms Post by dougchunyo on Mar 1st, 2005, 3:34pm 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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Title: Re: Want to try Mushrooms Post by Chuffy on Mar 1st, 2005, 3:38pm well it worked for me, so as far as I'm concerned CASE CLOSED!! ;) |
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Title: Re: Want to try Mushrooms Post by firebrix on Mar 1st, 2005, 3:52pm You don't need a green thumb, mate, - just a very clean and sterile one. Don't be daunted! It's a fascinating project, growing them and as long as everything's absolutely sterile when you handle the spores, syringes and cakes, the results will delight you and help you with your ha/s. Good luck. IMHO you've made a good decision. firebrix |
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Title: Re: Want to try Mushrooms Post by rextangle on Mar 1st, 2005, 8:34pm Actually, they call it a white thumb when you grow mushrooms... any kind that is.... ;;D For the skepticals... Don't knock it til you try it! It works for a lot of people... That's all for now... "crawling back to my cave" Rex |
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Title: Re: Want to try Mushrooms Post by rextangle on Mar 1st, 2005, 8:36pm Seriously, I know this is redundant, but in case you've missed it... please read at: http://www.clusterbusters.com http://www.maps.org That's a good start! ;) Good luck to all, Rex |
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Title: Re: Want to try Mushrooms Post by iwannabeer on Mar 2nd, 2005, 5:00am I am getting excited about trying the fungus, but haven't procured any as of yet. As far as the heated discussion goes on whats good and bad for you...I've had 10 differend quacks pumping 20 differend meds in me for 15 yrs, I don't think my liver will mind a few shrooms. The pain has been so bad at times (i'm sure most of you can relate) I'd eat a pile of cow manure to get to the :-[shroom if I thought it'd work. |
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Title: Re: Want to try Mushrooms Post by Chillrmn1 on Mar 2nd, 2005, 5:32am Iwannabeer, Have had clusters for 28 years, first tried them during this brutal episode. We're all different, but for me this WORKS! My only regret is not trying 'em sooner! I have never experienced such relief from my clusters without nasty body side effects like those from conventional meds. I can't say it enough, it works for me, wish I'd have tried it sooner, has been a true godsend. Thanx so much Clusterbusters!!! |
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Title: Re: Want to try Mushrooms Post by Renee on Mar 2nd, 2005, 6:51am www.mycobags.com for those without green or white thumbs. ;) |
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Title: Re: Want to try Mushrooms Post by dougchunyo on Mar 3rd, 2005, 11:06am I located a very simple and inexpensive way to grow grow shrooms here: http://www.shroomwizard.com/growguide.html I think I will give it a try. In the meantime I've ordered some Kudzu that the other string is so giddy about. According to that, the 'zu works in a similar way as the shrooms. I will try the 'zu for a week and if that works I won't mess with the 'shrooms. I will use the week to gather the necessary items for shroom cultivation, and be ready to start if need be. If neither helps, I'll be no worse off than I am now, and it won't kill my wallet either. |
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Title: Re: Want to try Mushrooms Post by JJA on Mar 3rd, 2005, 11:29am dougchunyo, Sounds like a good plan. I think this is what you meant, but just in case... You should probably lay off the kudzu before doing shrooms. According to floridian's post, kudzu "blocks the 5-HT2 receptors." The effects of shrooms (at least the psychological effects) are thought to be by stimulation of 5-HT2 receptors. In theory, the kudzu could completely negate the effect of shrooms. Good luck, Jesse |
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Title: Re: Want to try Mushrooms Post by miapet on Mar 3rd, 2005, 11:31am No one knows if there is a detox period for the 'zu' as you called it *L* I know there are some CH women who are (or have been on) estrogen (I won't out them, but we have had the estrogen conversation) . . .anyway, estrogen didn't help their h/as . . .if anyting, they had other problems. Synthetic and/or organic replacement estrogen opens up another whole can of worms . . and can lead to h/as on it's own . . . As for the man boob issue . . .well, shoot, even I won't go there . . . . . .but, I will say, if it works cool . . .BUT . . shrooms don't cause man boobs. .. .hehe *positive light and energy* miapet |
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Title: Re: Want to try Mushrooms Post by Bob P on Mar 3rd, 2005, 12:00pm Jesse, Yep, I was talkin about the kudzu ( I actually posted that in the wrond thread, i moved it to the kudzu thread). |
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Title: Re: Want to try Mushrooms Post by JJA on Mar 3rd, 2005, 12:06pm Ok, Thanks Bob, I edited my post accordingly. Jesse |
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Title: Re: Want to try Mushrooms Post by LeeS on Mar 3rd, 2005, 12:19pm Good luck on both counts Doug. Mia - man boobs! ;;D Glad I'm following the zu thread, you had me worried ::) Congrats on 41 weeks btw 8) -Lee |
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Title: Re: Want to try Mushrooms Post by floridian on Mar 3rd, 2005, 12:46pm on 03/03/05 at 11:29:07, JJA wrote:
That is a real concern. In a few months we may know the answer; for now, people seeking the greatest chance of remission via shrooms should consider avoiding kudzu before dosing. |
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Title: Re: Want to try Mushrooms Post by rextangle on Mar 3rd, 2005, 2:36pm dougchunyo, I used the same "Mushroom Wizard" instructions for my first batch... it works. Just bypass adding honey to it. You may end up with contamination... Or this one is good and easy too... http://www.fungifun.com/pf/pf_en.htm#zubereitung Don't hesitate to ask if you have any questions.... Growing is not as hard as it seems... the most difficult part is the innoculation.... after that, it's the waiting game.. Another tip: Cambodians are fast colonizer.... Instead of waiting up to 5 weeks to see any mycelium growth, these pups colonize in 5 days... Really. And they do not require any cold shocking. They're very resistant to contaminants. Good luck! Rex |
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Title: Re: Want to try Mushrooms Post by dougchunyo on Mar 3rd, 2005, 4:00pm Rextangle, Thanks for the info, I was wondering which to get... |
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Title: Re: Want to try Mushrooms Post by rextangle on Mar 3rd, 2005, 8:00pm You're welcome.... Let me know if you have any additional questions. |
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Title: Re: Want to try Mushrooms Post by laguna on Mar 4th, 2005, 8:20pm I've had great success with magnesium citrate and magnesium oxide. |
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