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Title: Question about "alternitive" therapy Post by Sophie on Dec 3rd, 2004, 2:32am If the psilocybin treatment is as successful as it sounds, why aren't more of us trying it? I visit here alot and read the posts----I'm PF at the moment---but won't be forever. I had a hellish last two years with the R/Xs and Dr.s. It just seems to me it would be logical to try another way, but as I read the posts it doesn't seem to me that many others feel that way. Is there a reason, other than the legality? What is is sucess rate? Are there drawbacks? Is it worse than spending thousands and not tolerate the meds.? Just wondering and would be grateful to hear some opinions. Thanks--Sophie [smiley=huh.gif] |
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Title: Re: Question about "alternitive" therapy Post by karma on Dec 3rd, 2004, 7:47am Sophie, I sincerely hope that your questions can get answered. My own take on this is Primarily people trust doctors and medications. People are raised to belive that doctors are gods and right or wrong they are always right. Secondly this treatment will not be brought up by a doctor because it is not FDA approved and illegal. Thirdly the treatment itself has allot of stigma attached to it. It is thought that you need to get ready for a potentially uncomfortable psychodelic ride. It is becoming more apparent that much smaller doses will do the trick. Fourth people that have had success will not publicize it much because it is illegal Fifth because it is illegal, people just don't know about it unless they find sites like this. Sixth some people just cannot take the risk because of their jobs or are afraid. I've tried nothing and suffered. I've tried the meds and suffered worse. I've not tried the fungi yet but my cycles are usually a couple years apart and this year is the first I heard of this. You can bet I will give it a try next time around. |
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Title: Re: Question about "alternitive" therapy Post by Flash on Dec 3rd, 2004, 8:35am Somewhere in the region of 200 of us have tried this treatment. Those that have are usually transferred to ClusterBusters internal message board. The people that are left behind here are mainly the ones that are not using this treatment. The success rate is extremely high. It's certainly better than the success rate for any conventional meds. I wouldn't like to put a percentage on it. We are running a survey and I posted the current batch of results on this message board - cannot remember off the top of my head what they were. There are no known side effects, especially if you undertake the sip method which closely mirrors the dosing patterns of conventional meds. Hallucinogens do not form part of the standard drugs tests, and are undetectable within 36 hours. In fact the small doses used by the sip method may be undetectable altogether. |
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Title: Re: Question about "alternitive" therapy Post by JJA on Dec 3rd, 2004, 9:10am I think Flash and Karma have a pretty good explanations. I would just add to Karma's third point about stigma. Psilocybin is classified as Schedule I Quote:
Since the government (I mean primarily the US, but it may apply to many others) has started a war on drugs, there has been a "brainwashing" that certain drugs are "evil." Reefer Madness comes to mind. Most of us were brought up hearing that these drugs are horrible, life-ruining, sanity destroying, anti-American substances and should not be used. NO EXCEPTIONS aka zero tolerance. The government spends billions of dollars sending and enforcing that message. It's hard to get past a lifetime of hearing this, but a few painfree months will do the trick. Jesse |
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Title: Re: Question about "alternitive" therapy Post by nani on Dec 3rd, 2004, 9:32am There's actually a study going on at Harvard right now that may help remove the stigma about this treatment. For me it's a matter of having young kids in the house. I do not like the idea of going out and buying something on the street that I'm not sure about. The alternative would be to grow my own. I can't imagine how I would explain the cooler in the closet to my 11 or 9 year old without sounding like a hypocrite. |
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Title: Re: Question about "alternitive" therapy Post by Bob P on Dec 3rd, 2004, 10:10am I think Nani has put forth the major reasons. Most of us haven't been in the street drug scene for many years and wouldn't even know how or where to start looking for shrooms on the street. Also the uncertainty of what you are getting if you do find them. Find them in the wild and pick your own - most are inexperienced and afraid of poisoning ourselfs. Grow your own but the kids in the house factor limits that. The true success rate won't be know until a real double-blind study is done. Flash says 200 have tried it with something like an 85-90% success rate. What he is really saying is about 200 have filled out the questionaire and most of those were successful users. How many tried it and it didn't work so they just blew it off and moved on to other things, not bothering to fill out surveys? Don't know and won't know until the study is completed. All that can be said right now is that it looks promising, and if one is of the mind to, it's worth a try. Bob P (tried it, didn't work) |
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Title: Re: Question about "alternitive" therapy Post by karma on Dec 3rd, 2004, 10:46am I understand the reasoning of being afraid to try and explain it to your kids but I don't agree. I also have children. My boys would much rather see me try something that eliminates the horrors of a ch than go through 3-5 weeks of agony. I have no problem explaining to them what the deal is. Thinking you need to find a local dealer for the fungi is crazy. Grow your own. If your Pinning hopes on FDA approval then you may as well forget about it for at least 10 years. Just look at the recent congessional debate on medical ganja. Having said that we all need to support any study that deals with this in a controlled environment. You can't run before you learn to crawl. One more drawback to trying this method, particularly for chronics, is that your body needs to be free of triptans and some prevents. This can be real hard for some to accomplish. |
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Title: Re: Question about "alternitive" therapy Post by IHateSequelsNotH on Dec 3rd, 2004, 10:49am on 12/03/04 at 09:32:49, nani wrote:
I would tell them that it's simply medicine and they must have seen what you go through. It can be used or abused like any other med from a MD or not. I told my kid long ago and she understands it all and hopes I can find mushies instead of say prednisone.(that really spins me out) So I don't see how you are being a hypocrit at all as u aren't runnung aroud the house tripping mad but taking a natural med in a responsible doseage. Use and abuse, very different. But what you tell your kids is very individual of course. peace love Andrew |
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Title: Re: Question about "alternitive" therapy Post by Kris_in_SJ on Dec 3rd, 2004, 9:27pm Hi Sophie, I think everyone above has explained it well. Personally, I'm hoping that by the time my next cycle comes around (usually 3-4 years apart), that the U.S. studies will have shown some definite results. Even if they don't, I've done my research at clusterbusters.com and by asking a few choice friends here. I'm prepared to become a farmer if I must. I "stick around" because I hope that in some small way, I can help other sufferers through this horror we all share. At this point, I only know what meds and treatments have helped me in the past. But, maybe those same things will help someone new to this horrible syndrome. Hugs and Wishes for PFDAN! Kris |
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Title: Re: Question about "alternitive" therapy Post by Sophie on Dec 3rd, 2004, 11:41pm Thank you all for your responce to my question. I did not consider the "drug" test---I'd really hate to loose my $7.hr job--with no benifits in exchange for freedom from pain. However: it's interesting to know that this is undectable. As far as the war on drugs--it's working great here in small town Nebraska----meth bust every nite on the news. I do not have an open mind towards chemical--manmade drugs whether they are made in a real lab or a bathtub. As far as sanity distroying, I think Topamax should be on top of the list. Sounds like the pro's outweight the cons in my case. I don't have any dependents except a cat and she is stoned on catnip and won't ask questions. (she abuses) I don't have a problem with that because it's a natural plant. I really don't have 10 years to wait for the FDA to give approval----I saw the post about Harvard---and thought I'd like to be in that study---but first things first---have to learn to be a farmer ---then Harvard. Who would have guessed that CH would lead to this! I really do appreciate your information and I am so grateful to have someone to ask. My friends don't understand CH---let alone my quest for a special cup of tea---that just might have the majic to help with this "special condition". I think it's worth the try---and it's worth the feeling of hope. I have done my homework at clusterbusters also ---next cycle due in April---so I think the time is right. Didn't mean to write a book here---I most certainly feel for a chronic that would have to detox to try this----that's almost impossible and it's not fair. An uncomfortable psychadelic ride---can't be any worse than dry heaves---right??? Thanks again Sophie :-X |
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Title: Re: Question about "alternitive" therapy Post by nani on Dec 4th, 2004, 1:30am Let us know how it turns out, Sophie. I hope you get permanent PF time... :) |
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Title: Re: Question about "alternitive" therapy Post by Renee on Dec 5th, 2004, 10:51pm uncomfortable? NO! Not as bad as a prick of a needle. ;) |
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Title: Re: Question about "alternitive" therapy Post by Flash on Dec 6th, 2004, 9:14am Some of the minority that claim lack of success on the shrooms apply different standards for measuring success compared to conventional meds. For starters the active ingredient in shrooms is present is much smaller quantities than any conventional med. Secondly your doctor will usually stop any existing meds prior to prescribing a new one. Thirdly the doctor will quite often spend a few weeks determining the optimum dose. Fourthly if you go back after the first 4 tabs and tell the doctor that it hasn't worked, you'll be told to give it a chance. When it comes to shrooms we have an optimum operating range somewhere between 1/8th gram e.d.c. and 5 grams e.g.c. To scale that to say verapamill that would be the difference between 25mg and 1000mg. The optimum dosing frequency is somewhere between 8 hours and 7 days. Then we also have the major known effective variations of LSD and LSA to take into account, let alone the minor known effective variations of various plants and shrooms that contain LSA, psilcybin, psilocin, and God knows what else to boot. The there's the drug interactions. We're still groping in the dark here. Detoxing definately helps - that much we do know. The question is whether this is because certain conventional meds interfere with shrooms, or aggrivate the CH conditions, or a mixture of both. Then there's the question of mechanism by which the treatment works. It certainly works better when taken as part of a holistic programme of sleeping, eating, and exercise... but this is probably the case with most drugs. So with all that taken into account it's amazing that we've had ANY success. That's why someone taking 4 hits at a fixed dose and frequency in conjunction with other meds then chalking themselves down as a failure doesn't really cut the mustard around here. Yes there are medical trials (hopefully) about to take place, but those will initially be fairly limited. Their main aim is to demonstrate that YES there is something worth investigating further. In the meantime, and the meantime may last several years... it's still down to ClusterBusters, past, present, and future to attempt to figure out, as best as we can, what the fuck is going on LOL. So we need all the input we can get. |
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Title: Re: Question about "alternitive" therapy Post by Bob P on Dec 6th, 2004, 9:47am Gee, I guess I did it wrong (again)! Thanks for the chuckle. |
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Title: Re: Question about "alternitive" therapy Post by vietvet2tours on Dec 6th, 2004, 10:50am Sophie,have you tried oxygen? |
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Title: Re: Question about "alternitive" therapy Post by Flash on Dec 6th, 2004, 11:50am on 12/06/04 at 09:47:49, Bob P wrote:
You and I have been through this before. Unless you qualify the "failed" statement, then I'll feel compelled to put it in context. At least on this occasion I did so with a little more subtlety than usual. The bottom line is that you took a number of doses (off the top of my head I recall it was 4, but may have been more). You took them one week apart, and they were substantial doses. At that time we considered this to be the best approach BTW. BUT during this time you were also taking prednisone and I believe there was at least 1 shot of sumatriptan along the way... contrary to accepted wisdom. Since then we have observed that predisone plus shrooms results is an exceptionally high failure rate. We've also observed that sumatriptan significantly reduces the chances of success AND has a tendancy to prolong the process. It has also been posted here independently that some doctors and scientists now believe that sumatriptan can prolong the cycle and may cause episodics to become chronic. Three years ago a couple of the pioneering clusterbusters attempted to break their cycles with substantial doses paced approx 1 week apart, and in those instances took many such doses. As I recall the this was found not to be the optimum technique. I think BobW personally knows quite a lot about this - and its all in the clusterbusters archive. Since then people have been using more moderate doses with greater success, and some people recently have been using extremely small doses very frequently also with a fair degree of success. Many people have also been adopting the maintenance or preventative technique of regular moderate dosing between episodes and this has proved the most successful of all. Four or so doses in conjunction with other medications is at best a flawed example, and certainly not one I'd hold up as a shining beacon of hope. Next I suspect that we're going to hear from Margi, so to prequalify that tale I'll point out that sumatriptan, verapamill, predisone, O2, and topamax all regularily fail to prevent/abort attacks in the vast majority of people, but those sporadic failures are seldom if ever held up as examples of total failure. In most cases the doctor will simply change tact regarding the dose. Someone using shrooms 4x in 4 years with one failure... well that doesn't necessarily mean they have stopped working. That would be a very big conclusion to jump to however convenient. It's asking a lot for any medication to halt an episode at peak cycle!!! In fact, to the best of my knowledge nothing else can. Shrooms should be measured by the same standards as conventional meds. Those results that are ground out over a lengthy period, with varying doses, and frequency of dose, and with a detailed kip log kept on a daily basis and all other meds avoided are of more value in determining the effectiveness of this treatment. |
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Title: Re: Question about "alternitive" therapy Post by heprat on Dec 6th, 2004, 11:52am on 12/03/04 at 10:46:11, karma wrote:
I've been in cycle now for about two weeks after being PF for 2 years. I've been reading for two days straight and am so confused I can't see straight. I really want to try this alternative thearapy and am persuing locating some right now. I am using Imitrex injections nightly. I was on prednisone up to last friday and have been on a very low dose of topomax since then. Do I need to stop the topomax and if so for how long before I make an attempt? What about the trex? I've asked for some O to get me through so I'd be willing to stop everything else if needed. Any help here or via PM would be greatly appreciated. Thanks Kurt |
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Title: Re: Question about "alternitive" therapy Post by Flash on Dec 6th, 2004, 12:01pm In all honesty given the predisone, imitrex, and topomax I suspect that this would be a waste of time. Best save the shrooms for a preventative role next time around. For this episode at least it sounds like you've exhausted your options. on 12/06/04 at 11:52:38, heprat wrote:
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Title: Re: Question about "alternitive" therapy Post by Bob P on Dec 6th, 2004, 12:52pm Ah, just like the good old days. Flash's "facts" aren't always correct. Quote:
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Title: Re: Question about "alternitive" therapy Post by heprat on Dec 6th, 2004, 12:57pm on 12/06/04 at 12:01:28, Flash wrote:
:'( Thanks for the info Flash...but my heart just sank. My cycles can last for over 2 months and I was looking for some hope. The pred and topomax have been no help. The trex works but won't knock the cycle out. I was under the impression that the alternative treatment was effective stopping cycles as well as preventing them. Any idea how long the meds would linger? If I were to switch to O2 only for the next week...might the treatment be effective? I am willing to try anything. Desparate |
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Title: Re: Question about "alternitive" therapy Post by JJA on Dec 6th, 2004, 1:53pm Heprat, I can't speak for Flash, but I will give my opinion. Detoxing will give you your best chance of success. The longer you detox the better. The sooner (into your cluster) you dose, the better. But, there is still hope that it will work for you this cylce. I think that there is nothing that would give you a better chance. My best guess would be to detox for at least a week and longer if you can stand it. As for your question about the topomax, you say it's not helping so you may as well detox off that too. (As always talk to your doctor...) Knocking out a cluster that is already established can be a discouraging and painful few weeks, but when it works.... Click on this link ( http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1069040412;start=0 )for a very interesting thread on the use of shrooms and how tough and rewarding it can be. Warning this will take up a lot of time. Good Luck Jesse |
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Title: Re: Question about "alternitive" therapy Post by heprat on Dec 6th, 2004, 2:10pm Thanks Jesse I have since read the FAQ on the clusterbusters site and have found the answers as well. |
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Title: Re: Question about "alternitive" therapy Post by Bob P on Dec 6th, 2004, 2:34pm JMIN, Yes, I was med free when I took the first, semi-visual, dose. When it did absolutely nothing for my clusters, I went into conventional med mode but continued to dose every week for a total of four doses. I am stocked and ready to try again when the next cluster starts. Nobody said anything about not persuing the treatment. A quote from my first post in this thread Quote:
My only complaint with the treatment and some of the treaters is an attitude that this is the cure all and if it didn't work for you, you screwed it up, and if you don't try it you're nuts and you should donate your life savings to us and if you don't you're nuts. Go to the 'Busters page and read the very earliest of the archives Quote:
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Title: Re: Question about "alternitive" therapy Post by Flash on Dec 6th, 2004, 4:16pm It takes about 2 months to grow shrooms... Unless I was fully detoxed then I personally would not catch a plane overseas for a couple of weeks in order to purchase and consume them legally. Sorry but next time be prepared in advance. on 12/06/04 at 12:57:14, heprat wrote:
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Title: Re: Question about "alternitive" therapy Post by Flash on Dec 6th, 2004, 4:34pm on 12/06/04 at 14:34:48, Bob P wrote:
No if it didn't work then then there is a strong chance that either the strength of the dose, the frequency of the dose, or a drug interation was to blame. That is waaaay different to "you screwed up". Just in the same way as it's waaaay different to "the shrooms don't work". We are not looking to apportion blame, just trying to point out that every failure tells us much as every success... but making a careful distinction between a failed attempt and a failure on either the part of the shrooms or the individual. Bottom line: you did not fail, the shrooms did not fail, it was your attempt that failed. From that information we started to speculate that predisone may have played a role. Subsequently we have seen failures in others that had taken predisone. Therefore we now recommend no predisone... not a bad recommendation with or without the shrooms BTW that stuff sucks! Now the person that speculated the shrooms turned her chronic... There's more to that story including using unidentified street sourced shrooms that created a state entirely inconsistent with psilocybin. To be honest after reading the reports I ended up totally confused as to what had actually occurred. I do agree that occasionally the shrooms can under certain circumstances make things MUCH worse for a period of up to 5 days, however in my experience (this has occured to me 3x in 11 years) this has been followed by an abrupt termination of the episode. However I'm a hard bastard that's never resorted to trex in his entire life... well not entirely true, in fact the thought of using trex scares me shitless LOL. It could be that using something like trex in that situation could cause serious problems. Who knows? This time, which would appear to have started on Friday, I'm waiting till my episode gets well underway and then I'm going to try and terminate it with the sip method. Should be interesting but can't say I'm looking forward to it. Can't believe it's come round so fast. |
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Title: Re: Question about "alternitive" therapy Post by Sophie on Dec 7th, 2004, 1:57am In regards to total detox, would you include melatonin? I am a long time away from trying this, have to see how good I am at farming. PF--now--expect next cycle in April so hopefuly I will be ready. Also what about cigs.---caffine---sinus meds OTC---weed? Alcohol----chocolate---you know all the things the surgeon general doesn't reccommend. I intend to dose with the first CH--if all works out. I have gotten hit in the middle of winter---really hoping that won't happen----if it does---I may use melatonin---however it gives me a rash---must have some allergy to it. I find your discussions very interesting and helpful---and hope to be able to contribute my own sucess story in the spring. Iwill fill out the forms at clusterbuster also. Sophie |
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Title: Re: Question about "alternitive" therapy Post by Pinkfloyd on Dec 7th, 2004, 4:12am Heprat, I believe Flash felt that, you being an episodic, and just beginning to look into this, and thinking of the time needed to grow them, ect. that you may want to wait. If you don't have to wait to grow them, and are willing to detox from the meds you're on, considering the pred and imitrex are the two biggest culprits in blocking the effects of the treatment, it is certainly worth the try. Especially since you are, 1. early in the cycle, 2. Haven't been on the trex for long. It does seem that the longer people are on imitrex, the tougher it is sometimes to break the cycle. But we don't give up the fight easily if we can help someone stop the pain early. Let us know if we can help. BobP, What do you tell people here when they come on board and say they tried 200mg of verapamil for a month and it didn't work? That the verapamil treatment was a failure so go back to sticking yourself 5 times a week with Imitrex, and forget the verapamil? Try it again next cycle but try 250mg? If you think we haven't learned anything in the last couple of years, then by all means, do exactly as you did the last time you tried the treatment. And as far as this eristic gem of yours goes "and you should donate your life savings to us and if you don't you're nuts. " .. no one ever asked this. We know that most people here have already donated their life savings to Glaxo. Please check your tomatoes, as I do believe they are rotten. And Caesar's spirit ranging for revenge, With Ate by his side come hot from hell Shall ... Cry 'Havoc,' and let slip the dogs of war Your dogs have no place here as we come in peace Have a Merry Christmas BobW |
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Title: Re: Question about "alternitive" therapy Post by Pinkfloyd on Dec 7th, 2004, 4:19am on 12/07/04 at 01:57:16, Sophie wrote:
Melatonin is one of several things we list on the FAQ that is suggested to use preparing for, and during the detox period. If you get a rash from it though, don't use a steroid cream to treat it during this detox time. Have a friend scratch it for you. ;;D Good luck Sophie, BobW |
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Title: Re: Question about "alternitive" therapy Post by karma on Dec 7th, 2004, 5:49am It would appear that there is some old dirty laundry getting mixed up in this discussion. Please for the sake of those that just want information leave the dirty laundry where it belongs. Bob P This discussion needs your experiences as well as others that have tried. It doesn't matter to me if it worked or not. We need to hear all the facts. Good, bad or ugly but just the facts. Thanks for getting involved. There is no wrong way to treat CH its just that some are better than others. |
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Title: Re: Question about "alternitive" therapy Post by Flash on Dec 7th, 2004, 6:40am I'm extremely fortunate in that the treatment is very effective for me. This affords me the luxury to bait the fucker. Worst case scenario I get hit with 5 days of pure hell with 4-6 x 3 hour long kip 10s every day... but that's only happened twice in 11 years and 22 episodes and it's way better than 1 month of standard CH every 6 months. Interestingly I have NEVER had to detox because I don't take anything. Last time I took a prescription for CH was propanolol and amytriptylene back in April '95. During the 5 days of pure hell ooops' I've gotten scripts for methysergide once and maxalt once but never cashed them in. So from all that experience I can conclude that for me preventative doses once every 6 months are the most effective, and they can be like 1/2g jobs.. Next up is when the shrooms are ingested right at the onset, very small doses also work here but occasionally a second dose is required a few weeks later. Lastly and least effective are small doses at the peak of the episode, one of these usually kills the thing 5 days later. I've never actually tried the sip method yet. This will be the first time. The longest I can go between doses is 15 months. on 12/06/04 at 18:46:22, jminmilwaukee wrote:
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Title: Re: Question about "alternitive" therapy Post by Renee on Dec 7th, 2004, 8:19am I found the sipping method as a very good way to detox. I sipped while detoxing to keep the pain under control. Once my detox period was over I (recently) hit with 1.5g and now LOVING my pf time. While I may have to dose again to knock the beast out, as I feel he has been gravely injured but still lurking somewhere, I'm sleeping like a baby all thru the night and living life without the beast ruling me. Note: I was very scared to try the alternative treatment. The worst about the entire treatment is the fear of the treatment itself. Good luck to all and Happy Holidays!! ;) modified to add: 22 year sufferer with last 8 years being chronic. |
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Title: Re: Question about "alternitive" therapy Post by heprat on Dec 7th, 2004, 9:00am I'm going to attempt a reply in a brief moment of assumed clarity. Evenings filled with visits from the beast followed by days of shadows tend to clog my mind resulting in ramblings, begging for mercy and lack of will to do proper research. I think my previous post reflect this. I have been reading for three days straight. My plan of attack, for what it is worth, is this....I plan to stop using the trex (for more reasons than just the detox), sustain soley on O2 (went through a whole e bottle last night), and continue to persue locating a source of alternative treatment. I will attempt, after a minimum of 7 days post trex, the sip method at 7 day intervals, once again sustaining on O2. If it works...great...if not...at least I tried and the beast will eventually tire of me and move on. I then plan to farm and enter into a preventive 6 month schedule of dosing. Yes Flash...next time I will be prepared. I don't fear the treatment. I fear not being around to see my babies grow up. I fear my 4 year old seeing his poppa become a sobbing baby. Thanks to everyone for participating in this great discussion. |
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Title: Re: Question about "alternitive" therapy Post by nani on Dec 7th, 2004, 9:06am Quote:
I know it's hard for our kids to see us get hit, but I think it's actually good for a boy to see his Daddy cry. It shows him that men can cry, too. I hope you get some PF time hep...and Sophie...and everyone! |
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Title: Re: Question about "alternitive" therapy Post by Bob P on Dec 7th, 2004, 9:48am Quote:
Detox: How many people did the treatment not work for because they weren't detoxed? How many of those did it subsequently work for after they detoxed? Was the success because they detoxed or was it simply because they needed multiple doses? Quote:
It's really not that hard to admit that shrooms don't work for everyone. |
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Title: Re: Question about "alternitive" therapy Post by Flash on Dec 7th, 2004, 10:16am on 12/07/04 at 09:48:50, Bob P wrote:
It has not been established whether or not that is or isn't the case yet. In your case there was only one dose prior to starting predisone. So unless you're suggesting that shrooms must work on the very first dose??? In order to establish whether shrooms do or don't work for everyone we must first establish the optimum ranges for the following parameters: point in the cycle to commence the dose doseage time(s) of the day to dose (including with or wothout food) frequency of doseage pattern of the dose (ramp up and taper etc) number of doses any drugs or other factors that may interfere with the treatment These will vary slighty from individual to individual that's why I've used the term 'range'. At present our smallest dose is 40 times smaller than the largest, the highest frequency is 3x each day and the lowest once every 15 months. The only way to establish this is to start with a clean slate and systematically try every combination within reason and likely safety margins. You did start with a clean slate but then decided to throw predisone and sumatriptan into the mix, then abandoned the treatment after 4 substantial but infrequent doses. Your result does not tell us that the shrooms don't work for everyone, only that this particular attempt did not work for you. Perhaps under different circumstances it will work for you. BTW it is impossible to prove that something works for eveyone unless everyone past, present, and future is tested. |
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Title: Re: Question about "alternitive" therapy Post by Bob P on Dec 7th, 2004, 11:08am Quote:
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Title: Re: Question about "alternitive" therapy Post by heprat on Dec 7th, 2004, 11:46am on 12/07/04 at 09:06:35, nani wrote:
I get your point and I agree...but I'd rather him see me cry because my dog died or I hit my thumb with a hammer than because the beast was throwing me around the room. |
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Title: Re: Question about "alternitive" therapy Post by Flash on Dec 7th, 2004, 11:56am on 12/07/04 at 11:08:37, Bob P wrote:
Until that takes place this is the best we have to offer, and like monkeys with typewriters we would ultimately get there in the end. In this instance the powers that be were so impressed with the monkeys plot outline that they've decided to turn it into a small budget production... funded by the monkeys. If this proves successful then somewhere down the line someone might decided to produce a bonafida blockbuster. Until then we'll keep typing. |
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Title: Re: Question about "alternitive" therapy Post by Bob P on Dec 7th, 2004, 2:48pm Not taken as a jab but it would be much more believable if it included answers to these: Quote:
How you can say, Bob P took pred after his first dose so that's why it didn't work, seems to be grabbing at straws. Now if you could say 50 people took pred after their first dose and it didn't work for any of them, they then detoxed, dosed again and it worked, that would be a little easier to believe. Even then you could also say that these 50 people just needed two doses and the pred had nothing to do with it. That's what I'm talking about when I speak of facts verses assumptions. |
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Title: Re: Question about "alternitive" therapy Post by karma on Dec 7th, 2004, 3:58pm This whole discussion has evolved into degrees of affectivness and the lack of accurate records. Not one mention has been made of any harmful side affects. No rebounds, no blocked up plumbing, no brain damage, no liver or kidney damage, no bone deterioration, no draining the bank account, no waiting to get useless scripts from uninformed doctors etc. etc. There is of course the legal issue. But that is a minor detail. What it comes down to is that is has proven highly affective for chronics that got no relief elsewhere and episodics that wanted nothing to do with pharma. meds. The one person that has responded here that the treatment didn't work for is willing to give it another try. Sound pretty damn positive to me. BobP this arguement about dosages and regimes can also apply to people using Lithium, topomax, verapamil, triptans and a whole dictionary of other Pharma. meds. The common theme amongst almost all people here is that "it works for me but it may not work for you" And "if that dosage doesn't work it may need to be adjusted" or the one I hate to hear the most "if this doesn't work I don't know what I'll do" I can understand your attitude though. Some of the comments although I'm sure well intentioned, come across as pretty militant. |
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Title: Re: Question about "alternitive" therapy Post by Bob P on Dec 7th, 2004, 4:14pm The only side effects I had from dose #1 was about 4 hours of chills, hand tremors and a good deal of anxiety. Other med side effects: Verap locks me up tighter than Fort Knox. Cafergot gives me constant cold fingers and toes. Pred makes me a little irritable but I only use those 6 day dose packs. O2 dried the heck out of my throat. Of all of these, which is worst? Verap. No ill feelings in this thread. I just like to keep 'em honest and if I have to play Devil's advocate, I enjoy that too. lyg |
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Title: Re: Question about "alternitive" therapy Post by Jonny on Dec 7th, 2004, 6:28pm No one thing works for everyone, no matter how you slice it...that is how it is and will always be. Now someone pass me my Lithium.....LMMFAO ;;D |
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Title: Re: Question about "alternitive" therapy Post by karma on Dec 8th, 2004, 6:28am No Jonny, That is not how it always will be. Progress is being made. Like I said there is no wrong way to treat CH its just that some ways are better than others. Not everyone has access to rediculously costly meds. Not everyone beilieves that the pharma meds are the way to go. Even the docs don't know what works and what doesn't. Yet they want to play god and poison people with meds. that may or may not work. They want to refuse treatments like 02 that have a high success rate and prefer meds that they make money on. The fungi treatement is a real and effective treatment that works for far more than it doesn't. However, it is still not accurately known how much or when, will be most affective. Sounds allot like all the other meds that are prescribed but with minimal cost and almost zero side affects. WTF at least it won't kill you and all you got to gain is being pain free. |
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Title: Re: Question about "alternitive" therapy Post by Flash on Dec 8th, 2004, 10:01am on 12/07/04 at 15:38:51, jminmilwaukee wrote:
This point is worth reiterating. ClusterBusters have their own very busy forum with over 100 people contributing details of their every attempt at this treatment. We tend to forget that people on CH.com have not seen all the subsequent failures involving predisone, for example. At present there are approx 10 ClusterBusters filing active reports. This number grows as the group increases. Some Busters are sipping, some are taking weekly doses, some are reporting missed episodes due to preventative doses. We have several on-going chronics that are all reporting varying degrees of success. In some instances people are experiencing a substantially lower level of CH activity and while they are not 100% PF they are med free apart from the shrooms. So we now know that shrooms can at the VERY LEAST provide a safe and effective way to manage the condition. The doctors in charge of the proposed Harvard and McLean hospital study are also active members of the group and post in our forum. They are up-to-date with every attempt that we make to treat ourselves. So we do have quite a lot of information at our fingertips. Please be aware that the ClusterBusters forum is extremely focused on the treatment... there's much less trivial or off topic posting. Pretty much everything posted there relates to treating CH with hallucinogenic drugs. We also discuss aspects of the treatment that may not be considered suitable for a public forum - I guess that's the main reason for the existence of a seperate private forum. Many of the ClusterBusters do not bother to post to both places so some of us hang out here to keep everyone updated and look out for anyone that's embarking on this treatment. |
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Title: Re: Question about "alternitive" therapy Post by Renee on Dec 8th, 2004, 7:51pm Case #160. chronic 8 years :'( now med free :o working on being pf ;;D Having very restful nights and enjoyable days like I haven't experienced since before Clinton came into office. 8) ;) |
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Title: Re: Question about "alternitive" therapy Post by catlind on Dec 8th, 2004, 7:59pm Sophie, I'm in Omaha Nebraska. Feel free to IM or email me if you'd like to meet another clusterhead and learn about the busters.. Cat |
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Title: Re: Question about "alternitive" therapy Post by Sophie on Dec 9th, 2004, 1:33am Catlind Thanks for the offer---I'll probably have alot of questions----I've only know one other girl that has CH in this area----other than that I have never talked to anyone in person, that really has a clue what it's all about. Bet you never heard that before! Sophie |
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Title: Re: Question about "alternitive" therapy Post by miapet on Dec 9th, 2004, 9:36am It only takes one or two people who it 'didn't work' for, to make them think it won't work for anyone . .. or to make sure they slam the chance for anyone who it might work for. I researched and researched and researched. D had tried every drug (except DHE) and wouldn't go for surgery. NOTHING worked. He was so burnt out on trying things, and he had no faith that anything would work. When I came to him with this idea, he was more than skeptical, but he had placed the 'fight against the beast' in my hands, so he went along with my plan. Did the first dose kick the beast to the curb? No. Did it totally phuck up the beast, including taking away it's 'signals' and it's regular schedule? YES. Did it freak us out?? YES .. .did we give up? NO. Did the second dose kick the beast to the curb? Yes and No. It wasn't right away . . .it took a week or so . . .but the beast faded away . . . Could we have said 'It doesn't work' and given up after the first time?? Of course we could have. But, what the hell, 20 years of being a guinea pig for 'doctors' to practice on, what was a few weeks going to cost us, other than the potential for being p/f. We are more than thankful that we tried this treatment. We are more than thankful that Flash, Pinky, PF, and all the other busters who were brave enough to try this treatment and were even braver to post their results and help others who wanted to try it. *positive light and energy* miapet |
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Title: Re: Question about "alternitive" therapy Post by 1MajorPain on Dec 9th, 2004, 10:40am All I know for a fact is that shrooms worked better than anything I have tried in the past! The 30 years of meds the doctors gave me almost killed me and for sure have caused some major health issues I'll have deal with forever. You can bet I'll be loaded and ready to fight the beast as soon as he raises his ugly head! Major still headache free |
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Title: Re: Question about "alternitive" therapy Post by Bob P on Dec 9th, 2004, 11:11am Quote:
Like Karma said, people need to know the good and the bad so they can make an informed decision. |
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Title: Re: Question about "alternitive" therapy Post by pinksharkmark on Dec 9th, 2004, 12:20pm BobP raises a point I have wondered about myself in the past -- Is the success of those who have... 1) had initial failure while taking other meds 2) then subsequently stopped all other meds 3) then had success with psilocybin ...due to them having stopped taking other meds or is it just that they were people who would have had to take multiple doses even if they had been med-free from the beginning? The more reports I see at Clusterbusters.com the more I lean towards the former -- the less residue of certain other compounds there are in someone's system the fewer doses are required to terminate a cycle. Has this been scientifically proven beyond a shadow of a doubt? Nope, not yet. But it's the best we have to work with at this time. I have also wondered about another relatively common scenario where people have had: 1) little or no success with small doses but great success with subsequent larger doses 2) little or no success with larger doses but great success with subsequent smaller doses Is it the variation in dosage size that is making the difference or is it the total number of doses regardless of size? In this case it is much more difficult to say one way or the other. People are having success with both methods. At the moment I am leaning towards favoring the larger less frequent doses, but I am not 100% convinced on this one. For those not familiar with what I call a "larger" dose, please note I am not referring to a full-on Woodstock type dose where you become one with the universe, I am talking about a dose where the fact that you have taken a psychedelic compound becomes impossible to ignore -- some mild audio and visual effects are apparent. Bob has also speculated that those who have tried this with no success tend to not report their failures in greater percentages than those who have had success. I admit I have a hard time accepting this speculation. In fact, given the attention this treatment has received here I feel if anything the reverse would be the case. I certainly recall having seen reports of failure posted here -- probably up to a half dozen by now and I may have missed some others. I must also note that no one seems shy reporting their failures with Topomax, Sansert, verapamil, triptans, oxygen, etc. etc. Why would they be less likely to report their failure with psilocybin? Would they not be as eager to denounce yet another "snake oil" treatment as those who denounce magnetic bracelets and Noni juice? Help me out here! For what it's worth, I personally believe there are bound to be some people for whom the psilocybin/LSD/LSA treatment will inevitably be less effective and maybe even completely ineffective. But the more reports I read the more I feel the percentage of such people will remain low -- less than one in ten as a broad guess. As a final observation I will repeat a significant point raised here many times before -- a very large chunk of the reports we receive are from people for whom nothing else has worked. I do not exaggerate when I say the laundry list of preventative medications tried by some of our members exceeds three dozen! I feel safe in saying that a very significant percentage of our testers have extremely refractory CH. It therefore comes as no surprise to me that there is the occasional failure. Maybe for these people no medication currently known will work. I certainly hope not, but it is not outside the realm of possibility. I can't help but wonder what the percentages would be re success/failure if every clusterhead on this board would try psilocybin or a similar compound rather than continue with verapamil/O2 lithium etc. I can certainly understand why someone would choose to continue their successful regimen rather than abandon it for something new, so I realize this will never happen. I just feel that if we are getting such a phenomenal success rate with so many who are so refractory to the standard meds, we couldn't help but yield even more impressive percentages if it were broadened to include those whose cycles are more easily manageable. pinky |
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Title: Re: Question about "alternitive" therapy Post by karma on Dec 9th, 2004, 12:27pm Maipet, I've not heard or read any comments that discourage anyone from trying it. I am however discouarged that more people won't give it chance. I have read your ongoing thread about D's personal success and am vey encouraged. Thanks |
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Title: Re: Question about "alternitive" therapy Post by Sophie on Dec 9th, 2004, 2:51pm Miapet, I had been reading your thread for several months and following the progress. I have to thank you for making me think and ask questions. I have great hopes for my next battle----thanks to you and everyone else. Sophie |
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Title: Re: Question about "alternitive" therapy Post by miapet on Dec 9th, 2004, 3:17pm I wasn't implicating any one individual, nor this specific thread. I have been coming here for almost a year now, and more than once, if anyone even asked about the alternative, the negative responses would hit them. While I do believe everyone needs to be aware that it isn't a 'one time cure all' and may need to be tweaked or adjusted for each individual . . .the same holds true for 'traditional' CH drugs. I also don't see (very often) anyone telling people who ask questions about DHE, Prednisone, Trex, Ergot, or much of anything else, that they don't work. The general response appears to be, well, adjust it, you don't have it right yet . . .. why is it okay for that to be the response when it's a traditional med??? OR, when someone asks, for example, how lond does it take for Topomax/Depakote/whatever to work . .. if people say it/the didn't work for them, they still say: good luck. The big difference (aside from the potential of being p/f), that I see, is that the alternative isn't phucking up your circulatory system, your immune system, your sex life, or anything else (except the beast). *positive light and energy* miapet |
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Title: Re: Question about "alternitive" therapy Post by karma on Dec 9th, 2004, 4:25pm Miapet, Its used to really bother me to see people slowly killing themselves physically and mentally by going from drug to drug and then more drugs to counteract the drugs that were being taken. It still bothers me but I realized that everyone has choices. The grip of Ch can be very powerful. When it is allowed to become the most powerful and dominant thing in your life it can be very hard to give up. It sounds crazy I know but if you look at the time that people dedicate to this particular board it is obvious that CH is a very important part of peoples lives. People need to consider the very first question that was asked in this thread. If the psilocybin treatment is as successful as it sounds, why aren't more of us trying it? |
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Title: Re: Question about "alternitive" therapy Post by E-Double on Dec 9th, 2004, 5:15pm on 12/09/04 at 16:25:57, karma wrote:
Possible legal ramifications??? I don't know. I'm still dealing with this $hit......Went into cycle just as "D" came out.......been a long time. Anyway...I am more and more tempted to give it a go, however, What are the possibilities if even the slightest that I get caught growing or buying....and there goes my Teaching certification, my Board Certifications, and my life....? Now I certainly want to be without pain and without meds yet I don't have the answer for my own question.... Do I risk it? Can I take the chance if it is a slight possibility. I have to learn more from everyone here or others who have done this. Feel well all. E. |
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Title: Re: Question about "alternitive" therapy Post by JJA on Dec 9th, 2004, 7:34pm E-Double, Here's my opinion. I haven't heard of a single Cluster headache user being "busted" yet. Of course that could always change, but you'd be very unlucky to be the first. Shrooms are mostly overlooked by the law: not tested for on standard drug tests; drug sniffing dogs are not trained to detect it; lawmakers didn't go to the trouble of making spores illegal; Hell, people on this board have openly admitted that they are growing shrooms and still nothing. However, I can't deny that if prosecuted it would get really ugly. (I'll insert my usual plea for drug law reform here.) If you do try it and it works, it will all seem crystal clear. That is why so many people talk about it like it's a religion. I hope you get better regardless of how you decide. Jesse |
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Title: Re: Question about "alternitive" therapy Post by Shelley on Dec 9th, 2004, 11:04pm Hi y'all. Most of you don't know me. But I know you. I check on you every day. I became a lurker when I turned into a strident shroom zealot. Be quiet! People can form their own conclusions. The info's all there for anyone to find. Let the more tactful ones answer their questions. Now I'm feeling guilty. I'm feeling as tho some of you think that BobW, Pinky, Flash and a few other crazies are the only ones out there. I remember when I first found this site. What a relief. Learned a lot. Get the trex vials and split the dose. Try water, exercise, capsacin and lidocaine up the nose, give melatonin a shot. Most of the mainstream stuff had worked for us for some period of time and failed. Husband is the clusterhead, I'm the researcher. I started reading the old posts. Looking for a trend. Something we'd never tried but seemed to work for many. I remember the first shroom post I read. WTF! Holy Cow! Started searching and reading. You can too. Try the archives button to the left. I'd suggest starting in fall 2000. They're easy to find. Most people tried to use a keyword in their titles that would help you find them. I scanned some today. Amazing the number of success stories who no longer post. Where are you guys? If you're lurking like me, time to report in. Here's what I find interesting. One can read dozens of posts about all kinds of meds. Some work, some don't..for some people. Some, like verapamil work for many...but not at the same dosage. Mention shrooms and the world is polarized. All trial and error here. Don't even know how much chemical is injested since we can't distill it from the mushroom. Yet, a core group of people slog along, getting data from scores of people and drawing conclusions about interactions with other meds, the proper way to dose, and a suggested amount and number of doses. And, those same people are so generous with their knowledge. E-Double...I know how you feel. Felt that way once too. After my decision was made, posted to another who felt as you do. You'll find that discussion somewhere around 10/1/2001 if you've a mind to look at it. If someone can manage their CH with a combo of traditional meds there is a reluctance to rock the boat. That's fine. We couldn't. PF 100% with no med side affects is the goal at my house. Shrooms allowed that to happen. Still Farming Shelley |
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Title: Re: Question about "alternitive" therapy Post by Flounder on Dec 10th, 2004, 12:11am BobP, For once, a psilocybin treatment thread that you have become involved in has actually turned into a healthy exchange of questions and idea's, instead of a bitch slap match that you seem to get off on so much. That said, I have no grudge or ill will towards you, actually it's quite the contrary. I have to thank you. When I found Flash posting here in 1999 about his success with this treatment, you were one of his strongest supporters, while others thought he was nuts. Your posts helped sway me to try shrooms. Thank God I did. I've been med free and haven't had to see my Neuro in 5 years. This has changed my life and to see it do the same for so many others has been truly amazing. I know you have done a lot of work for OUCH as well as helping people here, and I commend you for that. I just don’t understand your approach to this subject often times. You tend to try to push as many buttons as you can, to see if you can get Flash, PinkFloyd, or whoever riled up. I think there are some underlying reasons for this that I am not aware of. I truly wish you success with your next attempt at this treatment. Maybe this time you will do it right. [smiley=laugh.gif] It’s really great to see people I haven’t seen post in a while like PinkSharkMark, whose posts are always articulate and thought provoking. Also people who have tried this treatment and are willing to share there experiences with it in an open forum. I can’t thank enough, Flash, PinkSharkMark, PinkFloyd, all the Clusterbusters, DJ, and yes even you Bob, for this freedom from the fear and destruction of Cluster Headaches |
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Title: Re: Question about "alternitive" therapy Post by Flash on Dec 10th, 2004, 7:39am on 12/09/04 at 17:15:29, E-Double wrote:
OK this is a serious step and not one to be taken lightly. I have quite a lot of experience here from my days as a scumbag. There are ways around this that while they occur to the criminal mind, aren't things that Joe Public would normally dream up. The key is to minimise the risk to the point where it become negligible. So here's a step by step guide: 1) Most Law Enforcement Officers wouldn't know a shroom if they found one in their donut. 2) Philosophers stones are even harder to identify because there's nothing to see but a bag of earth; they grow under the ground. 3) A bust is very unlikely, but these usually take place due to loose lips. You blab to someone that you trust, when you're drunk for instance, and ultimately some fucker that hates your guts finds out through the grapevine and snitches. 4) The smart thing to do is have someone else whose career wouldn't be jeopardised by a bust store the shrooms during the growing period. Like your ageing mother. It's also important not to leave any genetic fingerprints on the bags BTW. This is avoided by those little polythene disposable gloves, that incidentally you have to wear for reasons of hygene when working with the shrooms anyway. 5) Keep the bags hidden at all times. Philosophers stones don't need light (correct me if I'm wrong), they also grow at room temp. A good place to store them is outside in an outbuilding that isn't locked but is maintained at room temp. Hey any fucker could have stashed them there in you old mothers greenhouse - probably them pesky kids next door. 6) Grow a whole bunch at one time, that way the risk is limited to a short time period. Once it's time to harvest you process the truffles and turn them into a VERY concentrated tea. The kind where a little goes a long way. 7) Invest in a case of some nice bourbon like Woodford Reserve that weighs in at 100 proof / 50% abv. Mix the tea into the booze so that you end up with bottle of hallucinogenic bourbon cum fortified shrooms tea at around 30-35% abv 60-70 proof. You can go as low as 20% but it's best to keep it strong. This stuff will keep forever! Just be sure to keep your case of booze in a dark place like a cupboard. 8) So after 2 months of risk you end up with a nice case of booze. No big deal. Just don't blab to anyone and there is absolutely ZERO chance of getting caught. Now you have enough psilocybin to treat yourself for a very long time. That's how a smart criminal would approach such a situation. And unlike you the smart criminal would probably be under observation of some sort. The difference between the smart and the stupid is that the smart take EVERY precaution and leave nothing to chance. |
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Title: Re: Question about "alternitive" therapy Post by catlind on Dec 10th, 2004, 8:30am I would like to add to Flash's comments. There are some that are at higher risk with this than others, some can lose everything, their ability to remain in the US, their careers, their kids etc. One thing to consider is that if you are on very good terms with another buster, you can always forward the money to them and have them purchase your mycobags and spores for you and grow in their location. This of course only works with those that are already growing. It adds a bit of extra security so that you aren't directly attached to anything. However, should something go awry, you best be prepared to help out the person who has helped you out. This doesn't work for new folks trying things out of course, but for those that have been around awhile and have close friendships it may be an answer. Cat |
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Title: Re: Question about "alternitive" therapy Post by karma on Dec 10th, 2004, 8:54am In addition I would: remember that the best defense is a good offense. Catalouge every move you have made in treating CH so far. treatments, costs, effectivness, quality of life and health risks. Put it in writing and keep it updated. Have someone Video tape you while your experiencing a hit. There is not a judge or jury in the world that would blame you for trying this treatment to get relief. |
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Title: Re: Question about "alternitive" therapy Post by Bob P on Dec 10th, 2004, 9:56am One day, while my first crop was fruiting nicely in the corner of our upstairs master bedroom, there was a knock on the door. I opened the door only to have the guy standing there introduce himself as an attorney for the County. He was investigating a police brutality charge by the kid accross the street who got his bell rung after he ran from the cops and they cornered him in his front yard. I explained what I had seen that night from my bedroom window (4 sheriff cars, 2 fire trucks, 1 ambulance). He took it all in and then, gulp, he asked if he could take a look from my bedroom window. I calmly escorted him upstairs and let him look at the view from the window, stood there and talked for a few minutes, then back downstairs and left. He never realized the plastic storage container in the corner had anything growing in it. Quote:
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Title: Re: Question about "alternitive" therapy Post by Bob P on Dec 10th, 2004, 12:07pm I'd be tempted to challenge a few of your statements Jmin but I'm leaving for a couple of weeks in Spain and just too dang busy tying up loose ends at work to play today. So for now, fair enough. Hope you all have a merry Christmas. |
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Title: Re: Question about "alternitive" therapy Post by Margi on Dec 10th, 2004, 12:34pm well, I've got time to challenge a couple of those statements. 1. "The treament is the most affordable treatment that has ever been effective for clusters." We pay $20 a month for oxygen when Mike is in cycle. Out of cycle, we keep the tank for free (only pay to refill it) - and this is entirely reimbursable by our medical insurance. Granted, we didn't grow the last time Mike tried the treatment, but it cost us $50 on the "black market". 2. The treatment, unlike others, does not become inaffective over time. Beg to differ here. We THINK it kept Mike in remission (or at least changed the length of his remission) but when the cycle did finally come back, the treatment made everything worse. He was - I REPEAT - completely med free at time of dosings. We think he did build an immunity to it. Our opinion only. 3. The treatment has provided a PF existance to MANY long term chronics who have tried the entire spectrum of other known treatments. I know of three chronics who either worsened or felt no effect after treatment. One of them became chronic after dosing and she had been episodic prior to this. 4. The treatment has saved families, lives and the sanity of countless persons who had reached the end of the rope. Sorry but I have to call you on this. The cluster websites (here, UK, Italy, Canada) have most likley done all these things but on a much, MUCH grander scale. Finding other folks who understand clusters is right up there on the list of effective treatments. This is a pretty broad and 'with blinders on' kind of statement to make about one single treatment that does not work for everyone. I'm quoting Jonny here: "No one thing works for everyone, no matter how you slice it...that is how it is and will always be. " he's 100% correct, saying this. I'm not trying to discount the wonderful work the Busters are doing here so, everyone, please retract your claws. Mine come out, however, when blanket statements like this are made without proof or substance. Yes, the treatment works well for some. But not for everyone. We have proof of THAT. There IS no cure for cluster. Yet. |
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Title: Re: Question about "alternitive" therapy Post by JJA on Dec 10th, 2004, 2:00pm on 12/10/04 at 08:54:02, karma wrote:
Jesse |
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Title: Re: Question about "alternitive" therapy Post by Kevin_M on Dec 10th, 2004, 2:11pm on 12/09/04 at 12:20:33, pinksharkmark wrote:
Pink, it goes a bit far to make reference to the "alternative treatment" as being alluded to as "snake oil". I think that has not been reflected here. A sufficient enough point has been made to make this treatment a substantial curiosity worthy of the study undergoing now. "Not willing to try at this time" and the term "snake oil" can be separate designations with an exclusive connotation from magnetic bracelets and Noni juice. CB's does good work and have helped many. I think "snake oil" is too loose a term to be utililized here for interpreting the thoughts of those simply not currently imbibed of the same enthusiasm. More than several good points have been made about it, but as of yet some cannot console the benefits of being a "smart criminal". Kevin M |
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Title: Re: Question about "alternitive" therapy Post by miapet on Dec 10th, 2004, 2:15pm o2 is a lifesaver for some . . not all . . . .and not everyone has insurance, so the cost isn't always a co-pay. Of course, there is always the 'buy a tank and use welders o2' option (which is good, if that's what you have to do . .then do it!) . . .but that isn't cheap either. The OUCH sites do help people . . .they help people find out needed information . . .they give people a way to connect with others who understand .. .but I don't think they save families . . .we read (way too many times) about another family/relationship falling to the beast . . .this is unfortunate (to say the least) . . .would they have fallen anyway? hard to say . . .kicking the beast's ass to the curb is a good way to allow a relationship a chance at working on it's own, without the beast getting in the way. I am thankful for this site, as it gave me a place to look at information quickly and easily. It gave me people to ask questions to. It allowed me to find answers to hard questions. It allowed me to make (for us) the right decision. *positive light and energy* miapet oh, and D is one of the many chronics that this treatment did help . . .it not only gave us our lives back, it saved them. |
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Title: Re: Question about "alternitive" therapy Post by Ueli on Dec 10th, 2004, 3:24pm Ok, Margi, I've got to re-challenge some of your challenges. ;) 1. Your black market $50 was $50 more then you had to spend for oxygen, thanks to the Canadian health system. Butt for an US resident that money buys exactly one Imitrex shot or one tank full of oxygen, and you know damn well that many clusterhead has to buy many more out of his own pocket. So, Jmin's statement The treament is the most affordable treatment that has ever been effective for clusters. holds true for everyone but the few who live in a country where healthcare comes 100% out of the pocket of taxpayers. 2. We think he did build an immunity to it. - Not exactly the kind of statements to challenge or disprove what someone else said. 3. Jmin wrote: "The treatment has provided a PF existence to MANY long term chronics who have tried the entire spectrum of other known treatments." Note, he said "MANY", not "all". So, three or (a few more) failures do contradict Jmin's statement. Couldn't be the case who became chronic not just "think" (as in 2. above) it was because of the shrooms? 4. Sure, Margi, the CH websites were, and are, a tremendous help for any clusterhead. But despite that, many have lost family, job, sanity, house and dog, simply because this fucking affliction is so demanding both emotionally and financially. So I can wholeheartedly sustain Jmin's The treatment has saved families, lives and the sanity of countless persons who had reached the end of the rope. (Well, the "countless" may be a bit exaggerated, unless he is a very poor in counting ;;D) BTW, this, and the Canadian, web site have also helped many clusterheads to learn about psilocybin, one of the most promising CH treatment. Sadly the readers of the UK and German CH-sites must go abroad for this information, because the carriers there are too fucking yellow cowardly and gutless to allow a single word about this. A question for Margi and Bob P: Do you have a similar disturbed attitude towards antibiotics? After all, although they can cure many infectious disease, they are far from 100% effective and can have bad side effects like the squirts. PFNADs, Ueli [smiley=smokin.gif] |
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Title: Re: Question about "alternitive" therapy Post by Margi on Dec 10th, 2004, 3:45pm Ueli, I don't think I have a "disturbed" attitude towards shrooms. Far from it, in fact. I don't discourage ANYONE from trying it and those that have been here a while will remember that Mike WAS one of the first ones on the bandwagon. We, at OUCH Canada, were the first OUCH to publically discuss the treatment. I am the webmaster for OUCH Canada, Ueli. I hold the power to the delete key there. Never once has any talk of shrooms or busters been deleted. We, at OUCH Canada, believe in bringing every available treatment option to the table for discussion for clusterheads. I think that's a pretty fair and non-biased attitude, don't you? What I DO have a "disturbed attitude" about is folks claiming that shrooms are a cure. And that if it fails for someone then it must have been that the person screwed it up. Or accusing folks who have legitimate reasons for not wanting to try this route that they enjoy cluster pain or need to share misery with an internet support group. Yes, Ueli, that does disturb me. If someone doesn't want to try a certain treatment, that is 100% their choice. NOT the shroomers' choice. THAT's what disturbs me. Sure, shrooms work for some folks. But not all. They are not a cure. If they were a cure, why do folks have to keep re-dosing? And yes, mia, oxygen works for some. But not all. But the folks for whom oxygen does work, don't continue to be militant about pushing it and steamrolling over folks for whom they don't assist. Also, without this site (ch.com) you would not have learned about the shrooms, would you? Would you have searched out psilocybin treatment for clusters on your own? Don't lose sight of that. Tell the truth...where DID you learn of the shroom treatment? I DO believe that ch.com HAS saved many a life and relationship. Don't think for one second that it hasn't. I've counselled hundreds of supporters/sufferers in my six-plus years here and I do always suggest ALL routes of known therapies out there. And yes, I do always suggest the shroom route if the person is otherwise med free. Just as I do the water treatment. And the oxygen treatment. I'm all for non-chemical warfare against clusters. So if that makes me appear to have a disturbed attitude about this, then so be it. I think, Ueli, you need to rethink your stance on MY stance. edited to add: Just so you know, Ueli and anyone else who might believe otherwise? I have also helped to make sure other clusterheads could make tea in the past, (and would again in the future if I could) if they were one of the lucky ones for whom the treatment works. |
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Title: Re: Question about "alternitive" therapy Post by vig on Dec 10th, 2004, 4:12pm I find it to be the most effective treatment for controlling MY cluster headaches with the least cost and the least side effects. BY FAR! |
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Title: Re: Question about "alternitive" therapy Post by Margi on Dec 10th, 2004, 4:18pm on 12/10/04 at 16:12:28, vig wrote:
See? now THAT's what I'm talkin' 'bout. Non-judgemental, non-pushy, experience-sharing positive post. In response to that I say: Good for you, Paul! I'm so happy you've found YOUR magic bullet! :) we're all trying to stop the same pain folks. |
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Title: Re: Question about "alternitive" therapy Post by miapet on Dec 10th, 2004, 4:40pm Margi, excuse me??? Why not re-read my post. I gave credit to ch.com . . .I just didn't give it the credit of saving families or relationships. Let someone be pro-alternative, and they are 'steamrolling' but let someone be anti-alternative, or negative about it, and they are doing a freaking public service. Some time back I posted on the CB site, thanking everyong there for being so much more welcoming and friendly, even when someone didn't do the alternative, or even when they were wavering between should I/shouldn't I . . ..not once on the CB site have I seen a person deliberately (or 'on accident') hurt another person's feelings. I wish I could say that here. *positive light and energy* miapet (who doesn't have the 'power' to delete, and doesn't want it either) |
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Title: Re: Question about "alternitive" therapy Post by Margi on Dec 10th, 2004, 4:54pm Whoa, Mia - of COURSE I'm pro-alternative - when have I ever said that I wasn't? Mike was med-free for 20 years before we found this site and I still think that the preventatives he started in his last two cycles prolonged things (as did the imitrex). I hate all the chemical meds and Mike has found NOTHING that works as a preventative for him, so we are stuck with oxygen as an abortive. What is so hard to understand about that? To say I'm anti-alternative is just hogwash. I wrote the page for DJ about non-med remedies because I've spent YEARS researching what we could do to battle Mike's pain so that he doesn't have to get a prescription to do so. I also wrote the page for DJ about Doc Jerry's water treatment. It worked a couple of times for Mike because of all the ALTERNATIVE and non-chemical weapons we used. It stopped working for him once he added chemicals into the mix. I have NEVER told anyone not to try the shrooms. Maybe you need to re-read MY post again, Mia. You're right about feelings getting hurt here. I was responding to exactly that. Lastly, if I were "anti-alternative" as you say, I WOULD exercise that delete key power, trust me. You'll note that I haven't, have I. Your post on our Canadian board is still there and will remain there. I'm very happy that you've found the answer for your husband's pain. I geniunely am, Mia - it's impossible to hear tone of voice on an internet message board but please know that this IS said with all sincerity, ok? We ARE trying to stop the same pain here. Please respect the fact that I haven't found the answer for my husband's pain yet. Why is that so hard to accept? edited to add: one more thing, if our Family Services Team got a nickle for every supporter we've counselled against leaving their sufferer, we'd be wintering in Maui. (But that's all done behind the scenes here and we don't usually talk about it out "loud" like this, out of respect for privacy.) So yeah, I think these websites HAVE saved some relationships. I'm not disputing that ending a cluster cycle also is a day/night difference and I'm genuinely happy for those that have been blessed that way. It's not just one thing that helps clusters though, Mia, it's a network of things. THAT's the point I'm trying to make. |
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Title: Re: Question about "alternitive" therapy Post by Kevin_M on Dec 10th, 2004, 5:02pm on 12/10/04 at 16:40:52, miapet wrote:
I don't see where it is befitting to refer to Margi's comments as "anti-alternative" or hence "against the alternative" or being "negative", therefore, "denial of or refusing of consent to" it's efficacy, as being a perceived view of what Margie has been saying about the alternative. Kevin M |
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Title: Re: Question about "alternitive" therapy Post by Margi on Dec 10th, 2004, 5:10pm I don't understand your post, Kevin. My brain has apparently already left for the weekend... could you re-word that please? sorry. edited to add: ok, thanks Kevin - I get it now. Duh. Is it Miller time yet? Sheesh! I need a weekend. ::) |
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Title: Re: Question about "alternitive" therapy Post by Ueli on Dec 10th, 2004, 6:21pm on 12/10/04 at 15:45:38, Margi wrote:
on 12/10/04 at 15:24:45, Ueli wrote:
Margi, is my English that bad that this lengthy justification of OUCH Canada was needed? I thought I made it clear enough which I consider the good guys and which the bad ones. Margi, I'm with you having a disturbed attitude about people that claim anything as a cure for CH, they are simply snake oil peddlers. But I can't remember anyone ever claimed shrooms as a cure, ending CH once and for ever. In the contrary, from the very first posts of Flash ( 1998-06-28 ) an attentive reader could learn that a (about) yearly maintenance dose was needed. As for the screewing up: That not only happens with shrooms. How often did we see a ridiculous low dose of Verapamil? How many had only success with oxygen on the second, proper attempt (Ask your witness Jonny how I had to kick his ass to try oxygen the right way, now it's his second love)? Margi, I know you know all this, but I wrote it for benefit of less informed. :) Jmin wrote a list good reasons to try shrooms. He didn't claim it a cure, he didn't question the reasons of those who won't try it, he didn't claim a 100% success rate, nor did he clobber those not willing to learn from the experience of others and make a second attempt. And yet, Margi chose to tear his posts to shreds. What conclusion was nearer than Margi changing over to the Bob P side, because of the failure of Mike's second attempt? PFNADs, Ueli [smiley=smokin.gif] |
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Title: Re: Question about "alternitive" therapy Post by Margi on Dec 10th, 2004, 6:37pm Ueli :) you and I are indeed arguing some of the same points, indeed. So let's stop. I didn't mean to tear Jmin's post to shreds, as you say, I more meant to challenge some of his points. My biggest pet peeve is the general attitude that those who won't try ENJOY the pain of cluster. THAT really rubs me the wrong way. |
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Title: Re: Question about "alternitive" therapy Post by Kevin_M on Dec 10th, 2004, 6:54pm I may have seemed to be picky with word choice on this thread, but there are certain "words" which seem to reinforce the establishing of polarity on the subject as opposed to realizing the common ground that has been acknowledged. Agreeable comportment is, at this time, apparently a factor. Kevin M |
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Title: Re: Question about "alternitive" therapy Post by Bob P on Dec 10th, 2004, 7:06pm Quote:
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Title: Re: Question about "alternitive" therapy Post by catlind on Dec 10th, 2004, 10:04pm on 07/01/04 at 20:24:35, Margi wrote:
Home is referred to as the country of Canada because of the implications of trying shrooms here. Just thought I would put this up here, it's from OUCH Canada board. Margi is FAR from anti alternative as is witnessed above. Everyone has their reasons for choosing or not choosing a med. In my case, I refused pred treatment this last round of med tampering because of the horrible side effects I had with it last time. I also chose not to undergo the surgeries being suggested. That doesn't mean I like the pain. I understand that the busters are frustrated when someone won't even inform themselves about the shrooms though. When someone closes a door on a treatment option without even hearing or learning about the treatment, that I don't understand. If once you've learned about it and you determine it simply isn't suitable to your life, then that's a different scenario, and that should be fine too. I personally think that with the Harvard studies going forward, that everyone should learn as much as they can about this treatment the same as they would any other treatment. PinkFloyd will be the first to tell you that he has told some people that this treatment simply is not for them. It isn't for everyone. There are pro's and con's to consider same as for any other treatment out there. My 2 cents Cat |
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Title: Re: Question about "alternitive" therapy Post by karma on Dec 11th, 2004, 6:23am Interesting page 4. Mostly unhelpful but if one can read between the lines there is some very useful information. In a previous post I described CH as becoming dominant and important in peoples lives. This was not in anyway meant to mean that people enjoy it, only that the effects of Ch can be overpowering, forcing people to worry primarily about getting through the day as pain free as possible at any cost. I may have offended some people and for that I apologize. A routine is a routine and if the consequences of breaking that routine mean excruciating and debilitating pain then the routine can be impossible to break. |
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Title: Re: Question about "alternitive" therapy Post by Flash on Dec 11th, 2004, 8:48am I never thought I'd see the day where there were very pro shroom people arguing with merely pro shroom people LMAO this is a big change from 1998 when there were people threatening to send the police to my door. Margi the issues that I have with your points are as follows: 1. "The treament is the most affordable treatment that has ever been effective for clusters." We pay $20 a month for oxygen when Mike is in cycle. Out of cycle, we keep the tank for free (only pay to refill it) - and this is entirely reimbursable by our medical insurance. Granted, we didn't grow the last time Mike tried the treatment, but it cost us $50 on the "black market". Once someone has the basic equipment they can in theory produce a never ending supply by making their own spore syringes. Then the only cost is the rice. Anyway this whole point is pedantic. 2. The treatment, unlike others, does not become inaffective over time. Beg to differ here. We THINK it kept Mike in remission (or at least changed the length of his remission) but when the cycle did finally come back, the treatment made everything worse. He was - I REPEAT - completely med free at time of dosings. We think he did build an immunity to it. Our opinion only. I've been through this particular instance with you before. For starters he skipped his maintenance dose. Secondly he dosed at peak cycle, thirdly one or two doses is not almost never enough to function under those circumstances. Fourthly there was no attempt made to try an alterative size or frequency of dose. Under those circumstance sipping often sorts things out. Fifthly conventional meds were used, and has been demonstarted many times these have a tendancy to prolong episodes. All in this hardly consitutes the treatment stopping working, more just a sesation of it working miracles. 3. The treatment has provided a PF existance to MANY long term chronics who have tried the entire spectrum of other known treatments. I know of three chronics who either worsened or felt no effect after treatment. One of them became chronic after dosing and she had been episodic prior to this. I know of two. In one instance the person bought street shrooms and judging by the effects and description of their appearance they were not psilocybe mushrooms but possibly panther cap amanitas. So we'll chalk that one up as a failure I guess??? There was a gentleman about a year ago that was really suffering and the treatment didn't seem to do much, although he made a good attempt. This was at the same time as D and Lee (I think). This person was doing the larger doses a few days apart. Right now there is a lady on the CB forum that is really struggling, but she's putting up the m*th*rf**k*r of all fights. Hats off to her. Right now it's looking pretty grim, but she's nowhere near ready to throw in the towel just yet. With an attitude like that there is every chance that ultimately she crack this thing, and learn an awful lot in the process. Please provide full details of the other one as we can possibly learn something here. Personally that people try sipping as their first attempt and only go for the bigger less frequent whacks should that fail. Better still a small dose between episodes where the subject is episodic. So apart from your third point I'd say you were on shaky ground. If you look back through my 250 odd posts (VIRTUALLY ALL OF THEM ON SHROOMS) you'll see that I've had my ups and downs as have most of the clusterbusters group, but perseverence pays off in spectacular fashion. This treatment is not always easy, there are huge problems with it, that's why it needs it's own support group! As pinky mentioned earlier in this thread the shroom treatment does seem to attract some of the worst and most hopeless cases of CH. It also attracts a lot of half assed attempt where people decline to detox first. Even after almost 12 years we still don't know the optimum dose and frequency of dose. Were this treatment to have several million dollars lavished on it then I have no doubt that most of these so called 'failures' simply wouldn't occur. |
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Title: Re: Question about "alternitive" therapy Post by Margi on Dec 11th, 2004, 1:48pm You know what, Flash? I give up. I am sick to death of rehashing this with you about Mike's last treatment. You weren't here. I was. I know how things went. I was the one to watch him suffer in agony as the shrooms made things worse for him. You weren't. But...you're right. We must have fucked it up. Yep, you win Craig. Happy? Should I tell all those people I've been encouraging to try this treatment that they'd best have you there by their sides before they try? I'm done with this shit. |
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Title: Re: Question about "alternitive" therapy Post by Flash on Dec 12th, 2004, 9:18am on 12/11/04 at 13:48:39, Margi wrote:
Yeah like I don't know cluster headache feels like? Doh! |
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Title: Re: Question about "alternitive" therapy Post by karma on Dec 12th, 2004, 10:23am It really frustrating to see this discussion turn into a pissing contest. For what? It is the first constructive thread I have seen that deals with this. I'm sure I'm not the only one that has been helped. What a fuckin shame it. |
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Title: Re: Question about "alternitive" therapy Post by Redd715 on Dec 12th, 2004, 10:33am No you are not the only one frustrated with that Karma, but I see both sides to the arguement. All I know for sure is that it doesn't do any good for anybody to bite at anyone's heals over this. For anyone weighing the issues in regard to trying this avenue, all the fighting doesn't help matters. No one screams foul if someone says that 02 didn't help them even if they did it right. So please stop the bickering over this. It doesn't make the decision any easier for those of us struggling with all the issues. Pegg |
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Title: Re: Question about "alternitive" therapy Post by E-Double on Dec 12th, 2004, 10:52am on 12/12/04 at 10:23:20, karma wrote:
on 12/12/04 at 10:33:26, Redd715 wrote:
There is so much good that goes on throughout these boards....for the most part true support, yet this "issue" becomes such a spark for debate. I don't get that either. It's a real bitch!!!! I think you guys nailed it !!!!! Hard decisions to make with all the shit we put into our systems regardless of chemical or natural. The only guidance many of us have is from here because our doctors seem to be clueless despite all their years of helping Clusterheads...... Who knows.... Do what works for you but don't knock what works for others. |
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Title: Re: Question about "alternitive" therapy Post by nani on Dec 12th, 2004, 11:04am Quote:
Spoken like a true diplomat. |
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Title: Re: Question about "alternitive" therapy Post by Flash on Dec 12th, 2004, 12:33pm Sorry I have not acquitted myself particularily well especially with my last couple of posts. It's frustrating for me that BobP and Margi continually dredge up the same cases over and over without providing any contextual or qualifying details AND do so in the guise of supporting this treatment. Personally I feel I've got the choice between letting that go unchecked or debunking it. Someone that's never encountered this topic before either gets fed incomplete information or encounters a flame war. Now I would quite happily have each of these disputed instances of failure dragged right out in the open for a proper debate, as opposed to statements like "I was the one to watch him suffer in agony as the shrooms made things worse for him." which only serve one purpose. So yes by all means drag Mike's failed attempt into a thread such as this, but at least have the decency to present it in such a way that people can reach their own verdict. In other words provide ALL the details... and perhaps also list the times it did work and provide details of those too. Nobody is disputing that there have been failed attempts. The clusterbusters are NOT claiming that this will work for everyone - we're just pointing out that it's too early to tell. Perhaps we should just start a thread where we fully, openly, and fairly debate any disputed instances of success or failure, then we can simply cut & paste a link to that thread. Turning on each other doesn't solve anything. Putting negative spin on the treatment for whatever reason is only going to damage it. Why is it so wrong to assume that if the treatment didn't work then perhaps there's a way round that next time? Why is it so wrong to want to exhaust every possible avenue? If there are instances of the treatment backfiring then we do need to examine those in detail. I raised the possibility that such a thing might occur 3-4 years ago BTW. But so far in each of these instances there are several other factors at work, such as conventional meds... and we know for a fact that those can make CH much worse. So unless we take those out of the equation it's unfair to state that shrooms are to blame, it's probably not even fair to speculate with so little data. There is also the Internet to take into account, and with all due respect there are some very strange people get their jollys on the Internet. I still remember how someone died and came back to life and that's not an isolated incident. So for that reason I'm always sceptical of even the smallest coincidence. |
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Title: Re: Question about "alternitive" therapy Post by Sophie on Dec 12th, 2004, 3:12pm Well, I'm still here and watching this discussion with great interest. The conclusion I have come to in my case is, I would be a fool not to give this treatment a chance. I am med. free---out of cycle---don't have insurance and if I did I would not go back to the triptons, beta blockers, or topamax. The postman rang twice----so the progress has begun. Now I wait and see. See what the New Year brings. Nothing can be as bad as the 6-7 months of this year's episode. Wishing you all a half way decent holliday season and a tolerable new year. Sophie :) |
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Title: Re: Question about "alternitive" therapy Post by Margi on Dec 12th, 2004, 4:30pm on 12/12/04 at 15:12:12, Sophie wrote:
Absolutely, Sophie - I hope you do and that you find good success with it. I hope no one lets the character assassinations cloud the issue here over a treatment that has brought success to a lot of clusterheads. |
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Title: Re: Question about "alternitive" therapy Post by Kevin_M on Dec 12th, 2004, 9:40pm on 12/12/04 at 12:33:08, Flash wrote:
I guess opinions will continue to differ, do to statements as above Quote:
there appears to be an "alternative" interpretation, of less narrow perception. Kevin M |
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Title: Re: Question about "alternitive" therapy Post by Liby on Dec 12th, 2004, 11:02pm WOW, there definately are some passionate opinions on this subject. I am not a sufferer I am a supporter, so maybe, well most definately, I see things from a different view. I noticed a few things while reading this thread. First, the two people who seemed to speak the strongest in this thread, for the treatment working med free, Flash and Jmin, if I understood correctly, both had not used any type of meds themselves prior to trying the treatment, or atleast not for quite a long time. Is it possible that, that contributed to them seeing better, quicker results from the treatment, and since they weren't on any meds they didn't have the fear of giving them up so they can't understand that, they can only speak to the great results that they got that came from being med free, hence thier passion and point of view. I also have to wonder... If the people who speak out so passionately in favor of the alternative treatment aren't really trying to help others find the same freedom that they have found, then what is thier motive? As I mentioned, I am only a supporter, and I am a supporter of someone who has found and successfully used the treatment, and I have to tell you, after seeing his expected cycle come and go, with no real clusters to speak of, and after not having to watch him go through that, I started preaching the good word to others at cluster gatherings. I found myself having to back off because I was so passionate about it. I can't speak to what is best for anyone else but I sure know that NOONE should have to go thru what u guys do. And I know that with this treatment, some now don't have to. Doesn't that alone make it worth a good solid, med free try. Best of luck to you all, whatever u decide. |
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Title: Re: Question about "alternitive" therapy Post by Renee on Dec 13th, 2004, 8:41am Quote:
I've not had a ch since 12/8. That day I had 4 clusters with one going to a kip 8. That was the last time I dosed as well. Has this been easy? No Were there worse times prior to good times? Yes Was I ever ready to quit? No Am I having shadows or any sign of the beast still alive? NO, and I have a sinus infection right now. Did I have failures by having to use pain meds? Yes, but only temporarily as I never gave up. I did what I had to do to retain my sanity and then got back up and started fighting again. Do I regret anything. HELL NO! I may not be finished with the fight, who knows, but I continued to fight and will continue to fight as I have been chronic for 8 years and suffering since 1981. It has been a MF fight but the KO is coming soon if it has not already occurred. A cold front came thru here last night. Normally the biggest trigger for me. Did I feel any sign of the beast? NO I now find myself wondering what to do. Where to go. My life is suddenly changing. I was able to plan to attend a birthday party this weekend without fear of being hit. The party was GREAT! 5 days pf with no meds.....I should have tried this treatment years ago. I hope all are able to have some pf times as it is quite awakening to a chronic to wake up and not have my life controlled by the beast. Happy Holidays, Renee |
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Title: Re: Question about "alternitive" therapy Post by karma on Dec 13th, 2004, 9:30am SWEET! I hope you can modify your tag line soon. |
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Title: Re: Question about "alternitive" therapy Post by miapet on Dec 13th, 2004, 9:42am I didn't say any specific person or thread. I repeated the use of 'steamrolling'. I am not in a 'pissing' match, nor any other kind of match. Maybe what it boils down to is people wanting their egos stroked. *pl&e* mia |
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Title: Re: Question about "alternitive" therapy Post by miapet on Dec 13th, 2004, 9:44am BTW *YAY* and *happy dance* Renee!!!! May you count the p/f days for eternity. *pl&e* mia |
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Title: Re: Question about "alternitive" therapy Post by vig on Dec 13th, 2004, 10:15am and I'm thrilled for Renee! |
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Title: Re: Question about "alternitive" therapy Post by Flash on Dec 13th, 2004, 10:34am Great it looks like the treatment has finally gained a foot hold. From previous experience with other chronics, it's extremely likely that the hard part is over. You may get hit again but will probably be able to control it with small maintenance doses, and slowly stretch the time between doses farther apart. IMO keep the maintenance doses small BTW - this is where it becomes a delicate balancing act. There's also the possibility that you won't get hit for quite a while, there's no way of knowing. It is very unlikely that things will take a significant turn for the worse, provided you keep on top of it. The best strategy is to wait and see how long till the next serious twinge comes, if it takes 10 days then thereafter dose every 9 days for a while with 1/2g, then after a month or so try and stretch it out a little longer. This is not an exact science, it's like trying to stay within the eye of a moving hurricane. It can be pretty scary when you get slammed hard after those inital doses can't it? It's easy to see why some people reach for the trex at that point. I'm beginning to suspect that is also the WORST possible time to hit the trex. Make sure you remain well stocked up on the medicine, as the worst thing that can happen at this crucial point is to run out. To answer someone else's question: Yes the treatment works extremely well for me. I have been using it for coming on 12 years and would have experienced in the region of 24 x 1 months episodes during that time, a total of 2 solid years of pain. Instead I've escaped with 4 episodes totalling only 2 months of pain. Each of those instances are attribute to either lack of shrooms, or my own experimentation with when and how to dose. on 12/13/04 at 08:41:49, Renee wrote:
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Title: Re: Question about "alternitive" therapy Post by Flash on Dec 13th, 2004, 11:27am on 12/12/04 at 23:02:18, Liby wrote:
I acquired CH aged 16, from there on it was a downward spiral for 7 years. Although my CH is episodic the episodes are quite intense. It's now apparent that at least some of the blame for this likely rests with the analgesic drugs that the Doctor would prescribe. My weight would plummet around 2 stone subsequent to each episode. College was a big problem, it's hard to complete a course and pass exams with 2 months non attendance during an 8 month term. I ended up repeating years, taking time out etc. Relationships were also a problem. This is the major downside of getting hit with CH at an early age. Just as a romance was blossoming I'd go and dissapear for a month. Try explaining that one. By 1993, after 5 years at college with nothing to show for it, things were looking pretty fuckin grim. I now operated in 6 month spurts. It was becomming apparent that even if I managed to get the degree that there would be serious problems holding down a job. All this was hard to stomach because I am by nature an exceptionally positive person. The result was a hedonistic and destructive approach to my PF time. Drinking and dope smoking became a constant source of escapism. I wasn't going to get anywhere so why bother trying. No point planning more than 6 months ahead as my world was scheduled to fall apart. Ultimately I alienated friends, and fell in with the wrong crowd. Brains + determination + nothing to lose + a big chip on your shoulder... dangerous combination. The one day I took LSD, and unbeknown to me, nothing would EVER be the same again. The headaches stopped coming, the college degree was completed AND IN SPITE of getting hit with glandular fever. That last part is worth mulling over; glandular fever is a notorious cause of student failure. The alternative lifestyle was still on-going but with the headaches seemingly gone I began to think about the future and started a legitmate business. I grabbed every opportunity with both hands. Even the live fast die young attitude was transformed into a more positive seize the day approach. 12 years later the company I founded employs 59 people and has been valued at £5.5M. In addition to that I've realised my dream of owning a bar. Relationships also ceased to be a problem and we've been married for almost 5 years. So hopefully that explains why I am so pro-shrooms. In the past few weeks I've been taking steps to come out of the closet. It's likely that as things develop, stories like mine could be helpful to the cause. My avator is taken from a recent photo, and my email address is now listed. Using those clues plus my location and nickname it becomes a relatively trivial matter to verify my story. |
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Title: Re: Question about "alternitive" therapy Post by vig on Dec 13th, 2004, 11:58am CHeers Flash! mille grazie |
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Title: Re: Question about "alternitive" therapy Post by Margi on Dec 13th, 2004, 12:32pm cool. The notification thing is apparently fixed. Thanks for testing it out, though, boys. |
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Title: Re: Question about "alternitive" therapy Post by LeeS on Dec 13th, 2004, 1:02pm Thought you were quiet Renee ;) Way to go 8) Flash coming out the closet LOL. May have to myself ... -Lee |
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Title: Re: Question about "alternitive" therapy Post by Renee on Dec 13th, 2004, 1:14pm 8) Just enjoying life and wanted to share now that things are on track! This will be a happy holiday like no other since 1980. thank you clusterbusters! Hey Lee, Why don't you come out? [smiley=laugh.gif] modified: Changed tag line! Thanks for the reminder. |
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Title: Re: Question about "alternitive" therapy Post by firebrix on Dec 13th, 2004, 3:53pm Thank you Flash for sharing your story. But thank you VERY much for staying around and helping others too. So many people would have found their cure and simply disappeared. Instead, you've saved many people many years of pain, and are always ready to help another. You're quite a guy to do this for so long with so much happening in your life. Few would bother. Thank you to all Clusterbusters. You have given us hope. It is wonderful to read the progress of chronics using this therapy with success. Great News Renee!! Happy daze to all firebrix |
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Title: Re: Question about "alternitive" therapy Post by maryo on Dec 13th, 2004, 4:36pm The side effects of Cafergot and Immitrex (such as pounding heart) prompted me to take a second look at psylocybin. I followed directions carefully. Didn't much like the experience but figured it was for a good cause. That was yesterday. Last night I had a record three headaches during the night, not much sleep, and a constant shadow today that an ordinary person would call a headache. Anyone got any explanations or suggestions? Hanging in, barely Maryo |
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Title: Re: Question about "alternitive" therapy Post by Shelley on Dec 13th, 2004, 4:53pm Not unusual to get hit right after dosing. Depends upon the person. Not unusual to see HAs increase right after dosing. Depends upon the person. My husband reacts like you. Try some Red Bull and a couple Excedrin for the post-dose hangover feeling. I think that dosing in the a.m. or early afternoon is best...least for him. He yawns like crazy, but as soon as it wears off he's wide awake...impossible to sleep for several hours. You didn't elaborate upon "how" you dosed. Lots of good info at cb.com if you haven't read it already. Make sure that you follow the "Important Notes" and look at the recipe for tea. All this was gleaned, trial and error, from less-than-successful attempts. Hope you have success! |
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Title: Re: Question about "alternitive" therapy Post by Renee on Dec 13th, 2004, 5:29pm Same thing here. Typically get hit pretty good after dosing and there is no sleep for a few hours. The next day i'm pretty much wiped out, drained and overall yucky with another type of headache. The second day I'm good to go. Like Shelley asked, how did you dose? How much? Detox? Diet? |
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Title: Re: Question about "alternitive" therapy Post by tommyD on Dec 13th, 2004, 6:06pm Maryo - Like Shelly and Renee said, this is not uncommon at all, and could be a sign the Beast has been disrupted and is on the run. There's a chance you could see the Beast fade away without taking anopther dose...though it's likely another dose or two or three could be called for. Lots of folks "didn't much like the experience." You might want to try the "sipping" method - very small doses that caue very little if any psychedelic effect. You don't say how much you took, but it sounds like a "recreational" dose. For example, a recreational; dose might be two or three grams of dried psilocybe cubensis. Many have had good luck wityh half that dose. You would still get some psychedelic effects along with some annoying side effects - quesy stomach, fatigue, yawning, restlessness - and they might be more apparent than from a larger dose, which tends to hide the anoying effects. Or there is the very small dose - an eighth to a half a gram. At this level, there are only the slightest effects of any kind. Since these very small doses don't trigger the high toloerance, making you wait four or five days before dosing, the small "sipping" doses can be taken daily or more than once a day. Many have found relief after a week or three of this. Might take longer. The big advantage: no tripping required. The very small dose can be a small piece of mushroom placed under the tongue, or a few sips of shroom tea. Some folks use this as an abortive treatment, taking the dose at the onset of an attack or to stop persistant shadows. Works for some. Hang in there and good luck. -tommyD |
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Title: Re: Question about "alternitive" therapy Post by miapet on Dec 14th, 2004, 9:41am Slippery Elm Bark is also helpful if you have tummy issues. *positive light and energy* miapet |
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Title: Re: Question about "alternitive" therapy Post by CC2004 on Dec 16th, 2004, 8:41pm :-* hello you fabulous people - I just found this site yesterday and am finding my way around. I have read this entire string with great interest and hope Flash or someone might be able to advise me. Ive had episodic CHs for 28 years since I was 16 - this bout I am into my 7th week and having 6-10 attacks per day, half of those near maxing. Last time they lasted 5 months. So far I am not on any preventatives so I am very interested in this particular path... I use codeine and aspirin for the attacks, and my hot water bottle which I could not survive without! This morning I began taking magnesium and the water treatment. I trust these would not interfere? I would be grateful for advice on how to proceed to see if I might be a suitable candidate - but obviously I dont want to wait to grow anything myself and I am hopeful I could source something here once I knew what to do. Also, I think I read Margi saying the water treatment wasnt effective anymore with other drugs - is that only imitrex or does that apply to all pain killers? Ive had 18 glasses already today and countless trips to the loo and its only 2.30pm - dont want to keep this up if to no avail! thank you all - take care and keep strong |
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Title: Re: Question about "alternitive" therapy Post by Flash on Dec 17th, 2004, 8:13am DO NOT TAKE ASPIRIN OR PARACETOMAL FOR CH. Analgesic drugs make CH mush worse. The aggrivate the condition, extend your episode, increase the frequency of attacks, increase the duration of each attack, and increase the severity of each attack. Stop the anagesic and in about a week things will actually improve! The water treatment has some dangers. It dilutes the salt in your body and alters it's electrolyte balance - this can have extremely dangerous side effects, like causing your kidneys to pack up or your heart to fail. It's also probably explains why the waterx3 works, assuming it does in fact work. If you are going to continue with the water treatment then read up about excessive water consumption on the internet and keep it within safe limits. Adding salts to the water would prevent nasty side effects but doubtless stop the water having the desired effect. There are drugs available now called sodium channel blockers that probably work on the same principle. If you start the shroom treatment then perhaps try kicking it off with at couple of weeks of sipping. Start on 1/8th g dried cubensis or equiv dose every night at bedtime. Get back to us after a week and we can review the dose. It's possible to increase up to 1/4g x 3 daily so there's plenty of scope. Depending on how this goes it may also be worth trying the odd 1g or greater dose. BUT STOP THE ASPIRIN FOR AT LEAST A WEEK FIRST - not because it will interfere firectly, but because it will be aggrivating your CH. Good Luck! |
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Title: Re: Question about "alternitive" therapy Post by Flash on Dec 17th, 2004, 8:14am If you're undertaking the shrooms then yes I'd stop the water treatment also. It would be worth getting some O2 though if at all possible. Shrooms tend to increase the effiacy of O2. |
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Title: Re: Question about "alternitive" therapy Post by Margi on Dec 17th, 2004, 11:28am yeah, taking magnesium AND the water treatment, I expect you ARE in the loo a lot! :o I expect you can't even leave your house for extended periods of time, huh? It certainly isn't a treatment for everyone and Flash is exactly right, it changes your salts balance in your system, which is why the originator of the treatment, Doc Jerry, thought it worked. IF it's working for you, great - but do be careful with it and do read up on the hazards of drinking too much water. It certainly is a "therapy" that is more successful if no other meds are being taken, and not one to try if you're doing any other kind of treatment regime. Good idea to get a multi-vitamin into your system if you're going to continue this treatment though. Aspirin, codeine and heat for clusters? wrong, wrong and wrong. Aspirin will only eat away your stomach. Codeine does nothing to prevent or break a cycle, and heat is an aggravator for a lot of clusterheads. Really worth talking to a cluster knowledgeable doc and getting a 'script for oxygen as an abortive at the very least. Use ice on your pain, instead of heat. Frozen peas in a bag work well. If you are able to detox, do look into the shroom therapy. It has helped a lot of clusterheads break and prevent cycles. You can read more about it here: www.clusterbusters.com. edited to add: I've just re-read your post and if you've only started the water treatment today, it's probably too soon to tell if it will work for you. 18 glasses is a lot of water! You should drink an 8 ounce glass every hour through waking hours. So, unless you're not sleeping at all - you're putting too much water into your system. Please be careful! The one time it worked for my husband, it broke his cycle after two days and ended it completely after a week. But it did take a full two days before he noticed a difference. |
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Title: Re: Question about "alternitive" therapy Post by CC2004 on Dec 17th, 2004, 4:18pm thank you Flash and Margi. WOW! There's a bit to get my head around here, but first - Margi, your water treatment page said every half hour or at least every hour - I could manage half-hourly so I did so thats how Ive drunk so much! And I work from home so loo breaks not a problem! But I am alarmed to hear of the water dangers so I really would like to see the water cure page updated, and meantime I'll check on internet for more full info as suggested. But something is working - I went to bed early at 10.30pm last night as I felt confident after my day of water and magnesium - I awoke briefly twice early on but with no pain - next thing I know its 7.30am! Its been 7 weeks since I slept like that! Ive had niggles & shadows (which my hot water bottle has eased) but no real pain. So I feel great that Ive had some serious relief, but obviously from what you've both written, there are issues still... But because Ive had a good 36 hours, my plan at the mo is to put the shrooms on hold for now and see if I can find some balance here on this water/mag path that might continue to afford relief... (and for now I'll just drink 1 glass each hour) Im still trying to get my head around the other things - meds/heat - that you've raised, I'll write again soon... thanks again guys, you are great |
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Title: Re: Question about "alternitive" therapy Post by Margi on Dec 17th, 2004, 4:39pm good to hear you're getting some relief! You're absolutely right, Doc Jerry did say every half an hour if you can. It's honestly hard to drink that much water though, without feeling almost drunk. So do listen to your body and make sure you don't go too far, ok? If you start to feel "woozy", light-headed, whatever...pay attention to that. Hope the good results last for you and hey, if heat works for you, great. There are some here who do prefer it but they are in the minority. Whatever stops the pain for you is a good weapon for your arsenal! Keep us posted. |
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Title: Re: Question about "alternitive" therapy Post by Woobie on Dec 17th, 2004, 5:08pm My husband hasn't tried it - only because you have to be MED FREE before you can start (from our understanding)... and he has medications (for other things) he cannot stop taking. If he didn't have to take those medications, I guarantee, he would be doing it too. But I can only speak for him ........ not for others. |
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Title: Re: Question about "alternitive" therapy Post by CC2004 on Dec 17th, 2004, 6:03pm cheers! I got onto the heat because ice sent me into such outrageous paroxysms of pain I realised the opposite may be beneficial. For me the heat absolutely is comforting and it eases the pain - on the temple, or when those stabs hit in the eye I can bend the H/W bottle to fold into my eyelid... It helps me 80-90%. I guess this isnt the right place but since we're here, just in case anyone else who finds ice unbearable might get some relief from heat - for me it helps with the shadows and as certain as I can be it eases the onset, reduces the level of intensity, and reduces the duration. For me it helps the lower level ones go away without meds, and generally my medium attacks (with meds) last 15-30 minutes. With the medium-severe attacks I find the H/W bottle (+ meds of course!) not enough on their own and its then the violent rubbing and boring and pounding begins, but shifting the bottle to the other side or my neck can still be helpful then. Of course, for a full grade attack then anything less than a gun is useless! But maybe I am truly an odd bird (Flash must certainly think so) because I find anteinflamatory aspirin helpful also and Ive been relying on the aspirin as much as I can to keep the codeine levels down (mind you, now Im on the magnesium, Im not having any trouble with codeine side effects!) Anyway Ill go off & get more info on water etc and will work on maybe finding suitable balance for water & mag (as well as reassess pain killers because Im not even sure what analgesic means ) and see if I have success there before I go down alternative path. And I'll be onto finding out about O2 first thing monday... bye for now (honestly I am a new person from 2 days ago and I am so grateful to this site and wonderful members - thanks you guys, you've given me relief and new strength) |
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Title: Re: Question about "alternitive" therapy Post by CC2004 on Dec 17th, 2004, 7:29pm on 12/17/04 at 11:28:43, Margi wrote:
hi again Margi - just wondering if your husband is a smoker? (I am) If it is too soon for me to be seeing results from this water treatment, maybe my cycle is just rounding down anyway (but I dont dare think so because its only 7 weeks and last time it was 5 months). But somethings changed because the night before last for the first time I drank heaps of water that evening and then got a great 5 hour sleep. Then yesterday drank all day and got 8-9 hours sleep! But maybe just coincidence if too quick for water (& presumably mag) to be working? But still, very sudden change in pattern because the 2 nights prior, I was having attacks from early evening right through till morning, with nearly half of them near-max or max - but then as Flash points out, maybe the severity & frequency of those may have something to do with the aspirin/codeine...? on with the research... thanks again |
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Title: Re: Question about "alternitive" therapy Post by Margi on Dec 20th, 2004, 9:59am Hi CC, yes, my husband is a heavy smoker. So, now that the weekend is through, how are you doing with the water treatment? Is it still helping you? |
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Title: Re: Question about "alternitive" therapy Post by CC2004 on Dec 20th, 2004, 1:53pm on 12/20/04 at 09:59:44, Margi wrote:
hi Margi - sad to say I got hit after bed last night, 3 during night and this morning, after 4 days & nights relatively PF. In view of comments on my meds and to see how long/levels, I went without meds and got through 3 hits k5-7 20-25 mins only H/W bottle. Also gulped water but dont think that helped re water Ive been taking a glass an hour up till about 6pm, then half hourly until bed. In that 4 days Ive had shadows and neck pain and opposite side pain but no hits until last night. Only thing different yesterday was that I worked and I had hard time with other pains, shadows etc, but I would have expected to get hit in the evening once I stopped work rather than after bed :-/ I had got used to not sitting down to relax much in evenings because going from activity to relaxation is a major trigger, but the last few days I had been fine to blob in front of TV, as I did last night... Anyway thats the nature of the beast - think you've got it sussed and bam Im going to talk to doctor today to get oxygen, and need to decide whether to try alternative I had dared think I might have champagne at xmas - nah :'( CC |
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Title: Re: Question about "alternitive" therapy Post by Margi on Dec 20th, 2004, 3:10pm aw, rats, CC - I'm so sorry to hear that you had a bad night. Here's hoping it was the beast's final kick at you though. That often happens - just when you think it has left, it will come back and kick you square before it leaves for good. I wouldn't quit the water just yet though...last night may have just been a blip. At any rate, still try to get at least 8, eight-ounce glasses into yourself. It's good for you, anyway. Have you tried drinking hot water at onset of attack, just out of curiousity? There are some people (as you obviously know) who do respond better to heat than cold. It might kind of help your pain from the inside (just as drinking ice water helps the "coldies"). |
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Title: Re: Question about "alternitive" therapy Post by karma on Dec 29th, 2004, 6:32am bumped |
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Title: Re: Question about "alternitive" therapy Post by karma on Jan 28th, 2005, 7:08am again |
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