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Title: My first dose... Post by Eeyore on Mar 23rd, 2004, 10:50pm I dosed Sunday night...or actually Monday morning at about 1am. I know I said I was going to start off with .5 a gram but I decided since I was chronic and my friend said .5 grams wouldn't do nothing I took 1 gram. Things were going really well so I took another .5 gram at 2am then another .4 at 3am. It was really cool. Had a good time and all, but as I came down at about 7 or 8am I felt strong shadows until about 9:30am then I passed out and slept till about 3pm Monday afternoon. I went all day Monday without an attack but when I fell asleep that night at about 11pm I awoke an hour later with a kip7-8 attack. 5 min of O2 shook it off and I went back to sleep. Then today at the theater while watching Dawn of the Dead I had an attack which was also aborted with 15 min of O2. I'm going to dose again Friday during the day with 2 grams straight up. I'm actually having strong shadows right now so I'm going to go. If ya'll have any questions, let me know. Talk to ya'll later. - Eeyore - |
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Title: Re: My first dose... Post by Flounder on Mar 23rd, 2004, 11:49pm Hey Eeyore, Glad to hear everything went well with the dose. I know you were a bit nervous since you had never done anything like that before. It is fairly common to get hit for a couple days fallowing a dose. Some people get hit harder for a couple days before things calm down. I wouldn't be surprised if things started to get better for you in the next few days. If it has disrupted the normal times you get hit this is a good sign. Good luck and let us know how it goes. Also Eeyore, You know they have a big ass party for you every year in May at Peace Park in Austin. It's quite an experience in it's self. Take care! |
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Title: Re: My first dose... Post by BillyJ. on Mar 24th, 2004, 1:11am Eeyore, A bit of advice,the dose size is not simply related to trip level reached. i.e.- 1g=level 1 so 2g would=level 2 is not true.The results of doubling the dose may be much more than doubling the effect,so be prepared. The time between your .5g dose and the additional .4g may also be a big factor.There is what is called a 'closed door' effect.The first dose kicks in,the reseptors involved sort of shut down or block any additional drug. Theoreticly at least,if you took 1g and waited for the trip to start,you could then take as much as you wanted without additional effects.This is the reason for the 5 day waiting period between doses. This is just my understanding of what I have read, and I could be totaly wrong.I just want you to consider thease things and be prepared.I'd hate to see you go much higher than you were expecting to and possibly have a bad expieriance. Happy dosing and PF2U, Billy |
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Title: Re: My first dose... Post by Pinkfloyd on Mar 24th, 2004, 1:46am Thanks Billy. That was very good advice and very important to note. PF |
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Title: Re: My first dose... Post by Flash on Mar 24th, 2004, 9:18am Yes the chances are thatyouonly experienced the first 1g, around 20-30mins after youstart ingesting the door pretty much slams shut for a few days. After that all you are doing is burning valuable medication. Please also be aware that as with all drugs 2x as much does not equal 2x as good, or even 2x as nice. Imagine you drank 3/4 a pint of vodka - you'd probably have a good time. If you drank a pint you might find the experience a little too much, or even a lot too much. Do not be confused by how small the dose appears. For example LSD doses are so small that you couldn't physically see the acid without a magnifying glass, but holy shit the effects are out there. Also how many other medicines have given you complete relief with a single small dose... none is my guess. So just because you haven't been all out cured by the first gram, doesn't mean that you have to increae the dose. Hallucinogens are a learning curve, and it's best to get well used to them before you shoot for the moon. Personally the dose I've used successfully for over a decade is around the 0.5g mark. See where I'm coming from? Flash |
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Title: Re: My first dose... Post by Eeyore on Mar 24th, 2004, 4:14pm Thanks guys, I really appreciate your input. I wondered why things really didn't "take off" after the .5 and .4 gram doses. That makes sense. I think I will up the dose to 1.25-1.5 Friday. I'll let ya'll know how it goes. By the way my girlfriend is now posting on the board in the supporters section as "Helpless." She is the first girl I've met since I was diagnosed in Sept. of 1999 who truly understands and supports me in every way possible. She is truly a supporter :-*. I'll let ya'll know how it goes Friday. - Eeyore - |
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Title: Re: My first dose... Post by Pinkfloyd on Mar 24th, 2004, 5:15pm I think we all understand and appreciate the importance of having someone that supports us. Hopefully she'll soon be able to change her handle to "helpful" and won't feel helpless much longer. I would expect that helpless feeling is about as far away from the truth as is possible. Supporters always feel helpless and may never fully understand how help*ful* they really are. PF |
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Title: Re: My first dose... Post by Bob P on Mar 24th, 2004, 6:04pm And Eeyore, Be sure to be patient during the settling down period. Definately crap on schedule. This will keep your door from slamming shut. If you've had mincemeat pie within the last year it may take an extra dose or two as it takes a while for your body to return to normal after eating that stuff! Above all, keep in mind that if it doesn't work you must have done it wrong! |
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Title: Re: My first dose... Post by Pinkfloyd on Mar 24th, 2004, 7:33pm on 03/24/04 at 18:04:28, Bob P wrote:
YAWN Thats OK Bob, don't beat yourself up about it. We all make mistakes. Same thing you tell people when they don't use a non-rebreather mask. Feel free to wait for scientific proof that is acceptable to you before you try it again. It's rather ironic that YOU are about the best proof we have that triptans and steroids will block the actions of psilocybin. I guess you could say that we believe you but you don't. ;;D PF (so if ya don't want a tie for Christmas, (I can understand why you wouldn't want me wrapping anything around your neck) how about a "I thought I made a mistake once but I was wrong" tee-shirt?) ;) |
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Title: Re: My first dose... Post by Flounder on Mar 24th, 2004, 7:52pm Bob P, If you have a beef with Pinkfloyd then start your own I have a beef with Pinkfloyd thread or take it to PM. There is no reason to try and highjack this one. It's childish and really not helpful to anyone involved. :( |
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Title: Re: My first dose... Post by Bob P on Mar 24th, 2004, 9:05pm Quote:
Exactly my point. If I'm the best proof you have, you're really grabbing at straws. I believe shrooms are a viable cluster treatment. I also believe that all the do's and don't s that you guys spew are purely conjecture. It's a shame you dirty a viable treatment with such nonsense! When I read 'don't believe what's written in the medical literature about the half life of a medication' but listen to us instead, I just cringe. Ya know, the only reason I posted in the other thread was because the guy said the "only side effect" was the giggles. I posted my side effects, truthfully, and floyd got his panties in a bunch. Just couldn't accept that it wasn't what he wanted to hear. Get used to it. I've been here over 5 years and ain't goin' nowhere. |
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Title: Re: My first dose... Post by Pinkfloyd on Mar 24th, 2004, 11:37pm on 03/24/04 at 21:05:05, Bob P wrote:
LOL...and you've provided what scientific certainties to this treatment? [smiley=laugh.gif] I suppose we could just sit back and do nothing, trying to find the best treatment protocol. Is that the plan you used for OUCH? Should we wait for someone else to do this? You maybe? Could you please point me to the literature that will tell us the best cluster treatment protocol for psilocybin? Please tell us what dose size will be most effective and how many are needed. Point me to the abstract if you can't remember off the top of your head. I'd be happy to read it so we don't have to spew nonsense that you can't understand. We may not have the answers yet but you certainly aren't providing any. Just sit back and throw stones and red herrings and we'll do what needs to be done. PF (must have gotten a set of buttons this year instead of Lincoln Logs) |
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Title: Re: My first dose... Post by Bob P on Mar 25th, 2004, 9:58am Ya know, you've got a good tool on the buster/erowid site in the "survey". It's the real data that you have. It would be much more functional to quote the findings of the survey (78 out of 100 find that ....) than to take a few anectodal comments and profess tham as all encompassing fact. If you want to be sure about drug interactions with psil, you should fine tune that part of the survey. What were you taking, how much, how long, before or after dosing, etc. I think the best function that the busters and OUCH can perform is to collect numbers and present them to the professionals who have the resources ($) to determine the real protocol. Keep building the numbers and keep presenting until there is enough to catch their interest and get them to expend their resources. That's the direction I took with OUCH. You remind me a lot of myself about 4 years ago when I was learning about neurotransmitters, especially 5HT. I jumped on everything I learned and thought, wow, that's it. My focus was limited, my mind single tracking. I think I have a better picture now of how the establishement works. Keep gathering your data, it's the best thing you can do. |
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Title: Re: My first dose... Post by CJohnson on Mar 25th, 2004, 10:23am When you guys say steroids, you mean corticosteroids (prednisone), right? You aren't referring to anabolic steroids, androgenic steroids, oestrogenic steroids or progestogenic steroids, all of which are steroids, yet are very different from corticosteroids (prednisone). *meddling* PFDANs -Curtis |
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Title: Re: My first dose... Post by Bob P on Mar 25th, 2004, 10:41am Curtis, That's what I mean. I usually don't even use the word steroids. I stick to prednisone or pred since that is the only one I'm aware of being prescribed for clusters. Man, if ya want to gain weight the pred will do it! |
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Title: Re: My first dose... Post by Flash on Mar 25th, 2004, 11:42am Most people turn to shrooms because nothing else is working. That being the case why continue taking the things that aren't working as those MAY reduce the chances of success. Some people find that their condition actually improves when they cease the prescription medication. Check out the graphs by Hootch under the Updates on Psilocybin Research??? thread to see what I mean. In a real scientific study on the effectiveness of a treatment I sincerely doubt they would select people already taking a bunch of other medications. They may well test interactions further down the line, but the baseline effectiveness would definately be tested in isolation. The data we get from people that have detoxed is much more valuable than the data we get from someone that hasn't. In addition those that have detoxed have improved their chances of a quick success. If a GP prescribed a course of medication, and the patient returned 2 days later saying "I took one dose, but it didn't work so I've shovelled all this other crap into my system" then I doubt if the GP would be impressed... Nothing else has even the remotest chance of terminating an episode or breaking a cycle in a single dose. Only shrooms have consistently achieved this. Your also over emphasising my comments. The hypothalamus has been implicated in the CH condition. The hypothalmus is also thought to act as the 'body clock', CH has been referred to as the 'alarm clock headache'. The point I was making is that a lot of enviromental and lifestyle factors may or may not influence CH. Even watching too much TV for instance. Those that have suceeded with shrooms generally feel that shrooms have somehow 'reset' the body clock (I use that term loosely). Therefore in my opinion people should take a syergistic approach to this treatment regarding things like sleeping and mealtimes. TommyD did actually publish our results only a couple of months back. I took a copy of those and pasted them on this message board. There have been more results since then. We are now moving steadily towards a proper clinical trial. Now what exactly has OUCH done - in concise and specific terms please? And how has this contributed to breaking individual cycles and keeping people PF? Flash |
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Title: Re: My first dose... Post by Pinkfloyd on Mar 25th, 2004, 12:43pm on 03/25/04 at 10:41:05, Bob P wrote:
The generic term of "steroids" is used in the context of clusters/psilocybin because there ARE other forms of steroids used by people that have clusters and want to try psilocybin, than just prednisone. In general, we do mean corticosteroids. If Barry Bonds turns out to suffer from clusters and wants to try psilocybin, we'll have to take a look at some of the others. PF |
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Title: Re: My first dose... Post by Bob P on Mar 25th, 2004, 1:08pm Flash yesterday: Quote:
Flash today: Quote:
So, which is it? Did you gain some additional data overnight that changed the routine from many requiring more than 1 dose to it consistently working in a single dose? Long ago I reached the point where I really don't believe much of anything you guys say about the treatment. You seem to say whatever comes to mind at that moment. As for OUCH, the current leadership is working on: We've developed a cluster screening tool. We have speakers lined up for the convention. There is a new study being done on chronics. There is talk of a new study for different dosages for imitrex. The zomig nasal spray trials are almost ready to go live. We have the Grant templates set up and ready to go. We met and had extensive discussions with Glaxo. We have done a sampling for $$ and triptan usage for Glaxo. We have set up the outlines for education sessions. We have set up the affiliation with the NECH and OUCH. We met and had brief discussions with the Pfizer reps. I am building an ongoing cluster library. I have contact information for ACHE and AHS and info to resolve the conflict of information regarding the drip movie. There was discussion regarding being on Oprah. There was discussion on uniformity of chapters and they were particularly pleased with the PANJ set up. The NECH suggested we reinstate dues. We discussed the quality of life survey. There is a CME cd called Migraine Blues with a cluster song/video on it that we have copies of. There was discussion on an epidemiology and prevalance study for cluster headaches. The web site continues to receive thankyou e-mails for directing sufferers to good cluster physicians, for providing usefull infomation on various medications and treatments (including psil) and for providing support. Lots of doctors, research clinics and pharaceutical companies starting to take notice and include OUCH in their activities. Well, I wish I could think of some smart alec remark to end this post with like floyd does but I'm a little brain dead right now. |
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Title: Re: My first dose... Post by CJohnson on Mar 25th, 2004, 1:22pm on 03/25/04 at 12:43:39, Pinkfloyd wrote:
OMG! Barry Bonds uses steroids?! WTF?! PFDANs -Curtis |
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Title: Re: My first dose... Post by Pinkfloyd on Mar 25th, 2004, 1:29pm on 03/25/04 at 09:58:17, Bob P wrote:
Gee, why didn't we think of that? Had you joined clusterbusters a year and a half ago, (when you were invited) you'd know we have been doing just that for a long time. The point about *you* being good information is that what you reported was/is anecdotal evidence. Even reporting that 10 out of 10 people that have tried psilocybin while on prednisone have failed UNTIL they have discontinued the prednisone, is still anecdotal evidence. ALL available data on treating clusters with psilocybin is anecdotal at this point. on 03/25/04 at 09:58:17, Bob P wrote:
Are you speaking for OUCH? Has OUCH decided that they want to participate in some way now? Have you even asked OUCH if you are allowed to use those four letters in that particular order in a thread about mushrooms. [smiley=huh.gif] You took this direction with OUCH??? Can I have a copy of the data (you) OUCH has collected so I can add it to the database? Any funds you've collected should be sent to MAPS and noted that they should be used strictly for the Clusterbusters/Psilocybin/Cluster Headache trials so they don't end up going towards unrelated funds. Where can I view the public records of OUCH's finances so I can see how much to expect? on 03/25/04 at 09:58:17, Bob P wrote:
So, you think I'm only 4 years behind you? LOL on 03/25/04 at 09:58:17, Bob P wrote:
Thanks for all the help BobP. You're the best!! I'll try to catch up. ::) PF (any more "whata hoot" buttons?) |
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Title: Re: My first dose... Post by Melissa on Mar 25th, 2004, 2:21pm ahhhhh Pinkfloyd? I think you completely took what Bob said out of context. Correct me if I'm wrong here Bob P., but you meant (and I am assuming) that each respective party collect numbers and present them to the professionals to determine the real protocol of our own prospective goals. Is this right? :)mel |
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Title: Re: My first dose... Post by Bob P on Mar 25th, 2004, 3:26pm Thanks Mel. What I meant, and I sure could have worded this better, is that the direction I took while leading OUCH was that it was important to gain numbers of members, responses to the suveys on the OUCH site, any info at all that would be of interest to the pros. Buster's should do the same thing in the direction they are going. Their best resource will be the numbers. Without them, they're just a bunch of dopers in the eyes of the pros. At this point I do not speak for OUCH. I am but a member. PF, you are overplaying the relationship between OUCH and busters. I imagine it's a carryover from Flash jumping on OUCH-UK the other week. I know the OUCH leadership is very much in favor of the psil treatment and seeing the research efforts move along successfully. There is nothing preventing any one of the Officers or members from stating this. The question that is being wrestled with is should a non-profit org officially "endorse" the treatment. I would imagine that as long as it is an illegal substance, they will be unable to do that. That's not to say they won't talk about and share info, even on the web site, re the treatment, with the proper disclaimers. If you want to see OUCH's money, every cent is accounted for in the Committees page under Budget Committee Reports. Quote:
Sorry, I didn't know. I was just going by your survey and the only question I could find there is: "Were you taking any of the medications listed below immediately prior to or during the hallucinogenic treatment?" I didn't realize you were using some other tool to gather the info on when, how much, how long, before, during, after, etc. |
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Title: Re: My first dose... Post by Flash on Mar 25th, 2004, 5:02pm on 03/25/04 at 13:08:32, Bob P wrote:
OK so now you are getting anal about the definitions of 'many' and 'consistent'. Diego Maradona consitently scored goals, that doesn't mean that he scored in every single game, or with every touch of the ball. It means he scored regularily. So it is with shrooms. A large number of people have utilised the shroom treatment. Many of them achieve remission from a single dose, and many of them do not. Not many of them fail to achieve remission. Less still experience no improvement. Hardly any experience no impact on the course of their headaches. Many does not mean 'vast majority'. Please refer to my post regarding the figures compiled by TommyD for more specific figures. If you can be bothered then go and trawl through all my previous posts over 6 years regarding this treatment. I doubt very much if you'll find any inconsistencies, other than those that involve misconstruing my phrasing. I can say this with confidence because I have been telling the truth. This enables me to post freely without having to check back through everything I've ever written. Neither have I ever shirked a question, or neglected to gove full detail. You on the other hand have on several occasions past posted about your lack of success with shrooms, and on each occasion you have neglected to mention the fact that you were also taking predisone and imitrex. On most (do we need to agree a definition of most?) of those occasions I have pointed this out to you, and you have declined to comment. Twice I have pasted you original posts detailing the use of predisone and imitrex, and only the most recent time have you acknowledged those facts. I have no issue with your course of action. My (rhetorical) question is: What do your frequent reports of your single failure with shrooms, while neglecting to provide context that might qualify that failure, tell us? As for our survey... you were one of only 4 people personally consulted on the specific contents of that survey - the others being, pinky, earth, and myself. All your input was incorporated. Why didn't you raise these issues then? I agree they are valid, and would have welcomed them 3 years ago. Thanks for answering the first part of my closing question. Now how about answering the second one? How many people have OUCH helped to become and remain PF? I'll make it easy. Name one. I'll sleep a lot better a night knowing what a good realtionship OUCH has with doctors and how they are all sitting up and taking notice... Meanwhile we have an effective treatment, maybe it's time that OUCH leveraged those relationships and started to help us communicate this to all those good doctors. Oh and sorry it's illegal in some places. Flash |
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Title: Re: My first dose... Post by Pinkfloyd on Mar 25th, 2004, 5:43pm on 03/25/04 at 14:21:25, Melissa wrote:
Thanks for trying Mel, all kidding aside, I do appreciate it. The "prospective goals" of OUCH and Clusterbusters are whatever they are. The only protocol that was being discussed pertained to what medications if any, need to be detoxed prior to a successful treatment with psilocybin. The information Clusterbusters has already provided to the "professionals" is, and will be, used by them to help set the protocol for the clinical trials. While I am here and before I venture into BobP's next response, lest I forget, I do want to make it clear that the current administration at OUCH should take no offense at my remarks, as none is intended. I am very pleased and impressed at their current direction and what has been accomplished during their brief tenure. I hope that this continues and at some point we may be able to actually work together to help cluster sufferers. Time will tell. PF |
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Title: Re: My first dose... Post by Flash on Mar 25th, 2004, 5:43pm OK I dug up the stats post: The person that did all this work is TommyD, the following extract is in TommyD's words lifted directly fropm his post. I hope he doesn't mind me posting this!!! "There are treatment reports from a total of 71 people. 56 are positive reports; 15 are negative, questionable or indeterminant. Of the total, there are 18 reports from chronics, 36 from episodics, and 17 reports are undetermined - meaning I couldn't figure out for sure from the reports whether the clusterhead was chronic or episodic. Successful treatment reports, total = 56 (78.9% ) Negative treatment reports, total = 15 (21.1%) Successful treatment reports from chronics = 11 (61.1 %) Negative or questionable reports from chromics = 7(38.9 %) Successful treatment reports from episodics = 31 (86.1 %) Negative or questionable reports from episodics = 5 (13.9 %) However - Not all the negative reports are outright failures of the treatment. Four of the reports are incomplete, with subject usually making at least some inital progress, but then the reports stop (or at least I can't find any further posts) after a week or two. Of these, 2 are chronic, 1 episodic, 1 unknown. In two other cases, one chronic one episodic, the treatment worked at first, then stopped. The chronic later tried the gamma knife procedure, results unknown. In another two cases, the treatment relievd the clusters, but the subjects decided to switch to another treatment. One of these cases was a chronic, and was having to dose weekly and was finding the trip unpleasent, and switched to botox injections, which worked. The other did not indicate episodic or chronic, but the trips were unpleasent and included anxiety attacks. In these cases, psilocybin was effective, but not efficacious...or is it efficacious but not effective... Two others, both episodic, had only very limited success, and went back to conventional meds. Five had no luck at all. (three chronics, one episodic, one unknown). Two of these reports may have come from the same person, but I'm not sure so I count both reports. Some of these reports show use of Imitrex or other meds during treatment -- however, there are also success reports from folks using Imitrex and such. Droppping the four incomplete reports from the calculation, we get an 83.6 percent success rate overall. Now understand this "survey" is completely unscientific and not generalizable. The sample is too small and the research methods invalid. But the numbers fit with various estimates of success rates pretty well. I had been guessing conservatively at 80 percent. But I expect these numbers will hold up pretty well with scientific clinical trials. And I'm damn sure the ClusterBuster treatment beats any conventional med all to hell." I'd like to add to this that most of the people trying this treatment have screwed up in one way or another. This includes ineffective shrooms, overdosing, underdosing, running out of shrooms, failure to detox, failure to wait the alloted time between dosing, sneaking shots of Imitex, staying on other preventative meds, dosing at the worst possible moment, failing to take preventative doses... So taking all that into account and still achieving a success rate of over 80% is pretty astounding. In my opinion the true success rate would be closer to 100%. The bottom line is: DO IT PROPERLY AND IT WORKS. Thanks again to Tommy D. Flash |
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Title: Re: My first dose... Post by Flash on Mar 25th, 2004, 6:06pm BobP if you joined the ClusterBusters group then you'd have full access to the reports on which those stats are based. In fact most of those reports are taken from this message board, the only difference is that someone at ClusterBusters has taken time to collate then summarise them and file them in one easy to access place. Unfortunately we do not have as many completed survey forms as we should have. Not everybody has bothered to complete the survey. Perhaps if there were a button on this site linking to ClusterBusters then we'd get more response *hint*. Right now people like PinkFloyd and myself are effectively that button. Once we get 100 completed surveys we'll publish a batch of results. Displaying the results midway through a survey can skew them. I don't know why that's the case but I gather it's considered better practice not to have 'interactive' results. What is interesting from the stats is that 33% of the people attempting the treatment were chronic. My understanding is that only 10% of all CH sufferers are chronic. This makes the results even more remarkable. I'm not going to give OUCH such an easy ride as PinkFloyd has. Heh heh. I think that better results are achieved through shaming. BobP - your guess is that OUCH cannot donate to the clinical trial of psilocybin and LSD because the suibstances are illegal in certain parts of the US and greater world. The trial however is not illegal. It is going to be undertaken by 2 respected researchers from a premier medical institution. Without a clinical trial this treatment is unlikely to become legal. So the legal argument is a neat little Catch 22 to play on. The fact is it doesn't wash. The legailty aspect does not appear to impact on the functioning of MAPS, or various MS charities for that matter. Now since OUCH has yet to get of it's arse and start helping us, and because things are at a critical stage right now... By refusing to publicly acknowledge this treatment OUCH is undermining it. So right now it seems to me that the average clusterhead has a fairly straight choice: A) Continue to donate their subscription to OUCH and pay for OUCH to make pals with influential doctors and raise awareness of this condition. OR B) Donate their subscription money to the ClusterBusters trial via MAPS and help fund an effective treatment and thus get their lives back. In other words it's a straight vote (WARNING BAD COP MODE INITIATED). Decide whether you would like to: A) make people aware of your suffering and potentially gain some sympathy. OR B) end your suffering and get on with your life. Kenn - you would be proud of me :) |
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Title: Re: My first dose... Post by Pinkfloyd on Mar 25th, 2004, 6:22pm on 03/25/04 at 15:26:34, Bob P wrote:
[smiley=huh.gif] And what relationship would that be? PF (one of us needs a break) |
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Title: Re: My first dose... Post by Bob P on Mar 25th, 2004, 7:05pm on 03/25/04 at 18:22:32, Pinkfloyd wrote:
This one where play the deal about OUCH treating busters like taboo Quote:
Flash - point well made. The trial isn't illeagal. At least I don't think it will be if it happens. I do think the OUCH leadership would be compelled to get some input from the 1400+ members to see if they wanted their money going to that cause though. There is nothing stopping them from persuing this. So you really think my taking prednisone and triptans 2 days after I dosed kept it from working? Would that also hold true for the 2nd dose the day after I stopped the pred or the 3rd dose over a week after the pred or the 4th dose 2+ weeks after the pred? Oops I forgot I did it wrong! I have always told you that I took the shrooms while med free, at the beginning of my cluster. That's the truth and I've always said it. That, of course, was before you came up with the settling down period theory that is now professed. You lose another point in my book for insnuating that I have been untruthful. Quote:
I just need to check and see if you are serious here. You're going to blame your inability to accomplish what you want on OUCH? |
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Title: Re: My first dose... Post by Not4Hire on Mar 25th, 2004, 11:21pm ...oh my... what I have just read in this thread... makes me wonder just exactly *what the fuck* are we doing? I know that I do not present myself *professionally* to the members of OUCH or to the various sufferers of the thief that steals so much from our lives. I should be *presidential* and speak with gravity and certainty that what we are doing is the *best* path to take, the most *reasonable* and *medically approved* system of diagnosis and response, the *magic key* that will make us all better. But this is not about me. It's about YOU. Well, a little reality check here: NOBODY has YET to get a handle on Cluster Headache. Progress is being made. People are being made aware of a condition that has been mis-diagnosed, ignored, scoffed at and, in these forums (OUCH, ClusterBusters, CH.com, etc.) EXAMINED. By people who have a very personal stake in the success of this examination. Some folks that are WAY smarter than me are trying things that have a chance of being effective. I have tried many of these *things* and I believe I have made some progress dealing with MY personal and unique brand of the MOFO. And yes, the shroom has been a part of my progress. I also know people who are not finding relief with it. Oxygen is a very effective tool/weapon for me. I also know people who are not finding relief with it either. There is a lot of politics involved in this. A lot of emotion and a lot of *history* between (some/most of) the previous posters. I personally can only thank ALL of them for helping me come to grips with my condition. To look at it in a different way and to realize that we share something: it hurts and we want it to fucking STOP forever. I'm (sorta) the President of OUCH and I have to admit that I bristled a bit over some of the previous comments. But I also have to admit that y'all have made some very important points. OUCH is not doing all it can to promote ALL avenues of relief. Neither is ClusterBusters. Neither is the AMA. I don't think that any (yeah, right!) ORGANIZATION can fulfill all the wishes and needs of ALL the members/sufferers. But if there's another outfit (than OUCH and CBusters) that's doing (or at least, TRYING to do) more, PLEASE let me know. I will be glad to do what I can to further their goals. Just don't forget that we are a unique bunch with a lot of *flavors*. Each of us who have made a comittment to DO something, in my estimation, should spend this energy in working TOGETHER. And not comparing our .....length. With respect and gratitude to those who have taught me. Steve Lichens (Not4Hire) |
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Title: Re: My first dose... Post by Pinkfloyd on Mar 26th, 2004, 12:35am [quote author=Not4Hire link=board=meds;num=1080085134;start=25#28 date=03/25/04 at 23:21:57 But this is not about me. It's about YOU. Steve Lichens (Not4Hire)[/quote] Well Steve, that was about as well said and professional as it gets. PF |
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Title: Re: My first dose... Post by forgetfulnot on Mar 26th, 2004, 1:19am Quote:
Well Steve, your right up there with GB, Jr. ;;D Lee |
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Title: Re: My first dose... Post by Flounder on Mar 26th, 2004, 1:41am Edited, due to being ignored. |
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Title: Re: My first dose... Post by Flash on Mar 26th, 2004, 6:21am Steve - thanks for your balanced response. Please be aware that my purpose in stirring things up with OUCH is to open up the discussion. It's not personal. Over the years OUCH has employed what I term smoke & mirror tactics in dealing with advocates of this treatment. For the record these have consisted of statements like: A) If you just lay off us for a while we might get everyone to agree to publically support this treatment. B) We were just about to take you seriously and were on the verge of agreeing to publically support you when you pissed us off with that last comment. C) We would really like to come out in favour of this treatment but there are reasons why we can't and we are not at liberty to tell you what those are. D) By not publically supporting you OUCH is really helping because if we did support you the drug companies would have your clinical trial stopped. E) The legal thing. F) The frighten off the dcotors and scientists thing. And various others... BTW I am grouping OUCH and OUCH (UK) together on this one. I have a collection of emails and PMs that cover all of those. Since the softly softly approach hasn't worked in the last 3-4 years I've decided to wash the dirty laundry in public. It's not personal. I do appreciate that the current regime in the US is new, so just think of me as a pressure group :) Bob P - now we are getting somewhere. Part of the problem that I have is that you have never released full details of what medication you were taking and when. Going by your posts I can't even tell whether you started the pred 2 days after the shrooms, or whether you started to cease the pred 2 days after the shrooms. Usually we get a blow by blow account, and those are very useful. I have always advocated a settling down period. My reasons for doing so are that I have never required more than a single dose. On 2 occasions though I had to endure close to a week of hell after a dose before the episode inexplicably terminated. If you check back through my posts on various shroom treatment threads, I am always the one saying hold off and give it a chance. I get a lot of flack for that from the hit the bastard hard and often brigade. Almost everyone at clusterbusters disagrees with me. My standpoint is that I am a decade into this. The truth is we don't know why it didn't work for you. However neither have you given us much to go on. As I stated in one of my previous posts, in a scientific trial the subjects would not be taking any other medication. The results that cut the most mustard are where someone is detoxed, then waits for their episode to commence (or are chronic), avoids triggers as much as possible, and then initiates the treatment. Although the shrooms may potentially do the trick with a single dose, there are very few medications where the trail would be abandoned after only 1 dose. Therefore the people that remain detoxed and persevere are the ones bringing back the best data... come success or failure - both outcomes are equally valid. As I have stated in the past it took me years to convince myself that it was hallucinogens and not just chance or a placebo effect. I have had to endure episodes that I could have avoided in order to demonstrate this to myself. Even after others experienced the same thing I still felt skeptical for a long time. I have long stated my problems with the short term side effects of this treatment: see my thread entitled "Disaster with Shrooms", where although the shrooms ultimately proved effective I had to endure 4 days of hel and a bad trip to boot. I have also long stated that the best time to take the treatment is when PF. The next best time is right at the onset. The longer you leave it, and possibly the more medications that you take, the worse it gets... that's an effect witnessed by a lot of testers. I really take issue with your assertion that this is a promising treatment and that we are soiling it. Left alone this treatment would have gone the same way as all the red herrings of the past. Whether or not you like our tactics they have kept this alive, and at the forefront for several years. There are people working within clusterbusters for whom this treatment has proved ineffective for various reasons including (like me) an inability to deal with the side effect of anxiety. For some it only provided very short term relief, like a couple of days at a time. However they still acknowledge that this is better than most other things, although it is not viable for the to take a full on dose on a weekly basis. Those people are still part of the team, and still pitching in with their input. Although it may not be the most suitable treatment for them, they are eager to see other people helped by it. Flash |
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Title: Re: My first dose... Post by t_h_b on Mar 26th, 2004, 8:02am on 03/25/04 at 18:06:49, Flash wrote:
That doesn't surprise me a bit. Chronics have more incentive to try anything and everything until finding something that works. There's no way to "ride it out" and endure the pain and attacks until the cluster is over. Episodics get a cycle of suffering and relief but the life of a chronic is just downhill all the way without effective treatment. I sincerely appreciate the work that everyone has done and everyone is doing to help fellow ClusterHeads in a way that is hard to express. Thank you. |
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Title: Re: My first dose... Post by Bob P on Mar 26th, 2004, 10:23am Chronics - all 4 of the surveys at OUCH show chronic responders in the 25-30% range and the male:female ratio about 3:1. Flash - I can't accept the "legal" thing as smoke and mirrors. The legal issue is a reality in OUCH's functioning. Unlike busters, OUCH is a legal entity, registered with the Federal Government and as such the leadership has a responsibilty to operate the organization within the law. There's no getting around that. They could take OUCH over that boundry and wind up having the organization's charter yanked by the Feds. Like I said before, calling the sufferer's attention to the existance of busters is one thing but officially endorsing it is a whole other matter. |
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Title: Re: My first dose... Post by Margi on Mar 26th, 2004, 11:18am on 03/25/04 at 17:43:57, Flash wrote:
Careful with the generalities, Flash - Mike did it correctly, four times over the course of four weeks (the month of December) - totally med free and, if anything it made him worse. It wasn't until the end of January that he went for conventional meds. I know this timeframe to be true because it took us that long to get him in to see a neuro? In fact, I have a copy of a letter from that same neuro recounting that the first time she saw him was January 25, 2002. (The reason I have that letter is because of a fight I have going on with insurance to pay for our oxygen!) The ONLY thing he had as a defense against the pain was welder's oxygen, ice and water - none of which could have interfered. No, he didn't dose while pain free (before the cycle started) but neither can chronics, so that can't be added into the mix as "doing it wrong". I realize this has helped a lot of people but I really don't believe that anything is 100% effective. I believe that shrooms probably ARE the most effective treatment we've seen yet, but there always will be those that are unresponsive. It's just how things go, sadly. Peace. |
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Title: Re: My first dose... Post by 9erfan on Mar 26th, 2004, 2:04pm Ok, so this was suppose to be a thread about Eeyore and his results with shrooms. And while I do think that all of these issues are important and need to be discussed, we've lost the focus here. So EEYORE....HOW'S YOUR HEAD DOING?? ;) |
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Title: Re: My first dose... Post by Eeyore on Mar 26th, 2004, 5:01pm Hey all...my head is still like it was. I'm averaging about two or three attacks a day. I dosed again this morning with 1.6 grams. This time instead of just eating them I ground them up into a powder and dumped it into a small glass of orange juice. I must say, it wasn't even half as powerful as the first dose I took Sunday night (1 gram). I took it this morning at 9:30am and never really peaked then was back to normal at around 1pm. I was sort of disappointed. I'm thinking maybe I didn't wait long enough between doses. Just to recap, my first dose was Sunday night (Monday 1am) and second dose was today (Friday at 9:30). Should I have waited longer? Should I not have ground them up? Or are they loosing potency from being in my drying chamber for too long or maybe I just had a weak trip by chance...I don't know. I have 3.5 ounces dry that have been in the drying chamber for about a week now...should I go ahead and put them in my food saver jar with a little damprid and suck the air out then put them in the fridge? Are they loosing potency...? Thanks for the help. - Eeyore - |
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Title: Re: My first dose... Post by Bob P on Mar 26th, 2004, 7:05pm eeyore, I usually air dry mine for a day or two and then into the dryer with the damp-rid for a day. After that, baggie and freezer. Sorry the first shot didn't work. I had high hopes also. Keep at it, it sure can't hurt (any worse). |
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Title: Re: My first dose... Post by Eeyore on Mar 26th, 2004, 7:25pm Just in case anyone was wondering how I dried them (in case ya'll thought I used heat). My Chambers are two 18 gal. 24x16x16.5 Rubbermaid that has three racks with a 3 in. computer fan hanging from the lids in each and damprid in the bottom, no heat. They are "cracker dry." I heard that grinding them up will get them into your system faster and orange juice smoothes thing out, so I just mixed them up. I personally think that the reason it had little effects on me, trip level wise, is because I took the doses too close together. Maybe next time I will wait a full six days before dosing instead on the 4 days and 8.5 hours I waited between my first and second dose. What do ya'll think? Thanks. - Eeyore - |
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Title: Re: My first dose... Post by Bob P on Mar 26th, 2004, 8:14pm A similarity I see is the OJ. For my first dose I threw 1.5-2 grams in a blender with some OJ. Drank it down non-stop. I did get to trippin pretty well though. Any thoughts on citric acid's effect on psil? |
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Title: Re: My first dose... Post by Eeyore on Mar 26th, 2004, 8:32pm You know, I just realized that it wasn't OJ and shrooms, it was OJ and LSD. Yeah, it was that that the vitamin C in OJ makes the trip not as intense and smoothes it out while giving a boost all at the same time. I wish I remembered where I heard that. It was probably back in high school when LSD was everywhere. I remember dropping 3 hits of skulls and cross bones back in the day and a buddy of mine handed me three 800 mg vitamin C pills. Unfortunately, I was on 1350 mg a day of lithium (which I have stopped taking) at the time for my bipolar disorder and slipped into a dark 8 hour nightmare. Hallucinogens stopped for me shortly after. Man, now I'm wondering if mixing them in a drink was such a good idea. But yet you say that you had no problem with it so I don't know. I guess I'll just see how my head feels and try a dose of 1.5-1.75 again next Thursday. I'll let ya'll know how it goes. Thanks. - Eeyore - PS- I haven't had an attack yet today, but I have been feeling strong shadows all day long :(. |
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Title: Re: My first dose... Post by 9erfan on Mar 26th, 2004, 8:58pm Well, I am definitely not the expert here. But I know that the experts do recommend dosing no sooner than 5 days apart. You should've been fine with what you did. My last 2 doses I only spaced 4 days apart & I definitely hit a level 2. As far as mixing in a drink, also you should be fine. Clusterbusters recommends making a tea (recipe on clusterbusters.com)....the caffeine is suppose to help the dose work better. I've been told you can wash it down with OJ too. I did my 1st three doses using the tea. My 2nd dose of 1.2 grams did not hit me as hard as my first dose of only 1 gram. No clue why. My last 3 doses were done in the form of chocolate and there wasn't a problem. Sorry I can't be of more help. |
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Title: Re: My first dose... Post by Eeyore on Mar 26th, 2004, 9:29pm You know, about two hours after I dosed this morning, I went to the bathroom and ended up taking some http://www.imodium.com/. I wonder if that had anything to do with it. By the way, do shrooms give anyone else diarrhea? The same thing happened my the first dose, only several hours later. I didn't take any http://www.imodium.com/ that time. Sorry, I know none of you want to hear about my battles in the bathroom. Thanks. - Eeyore - |
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Title: Re: My first dose... Post by pinksharkmark on Mar 27th, 2004, 12:01am on 03/26/04 at 11:18:06, Margi wrote:
I remember that quite well Margi. I found it worrisome because at the time Mike was one of the ones we had been tracking the longest -- one of the very first apart from Flash to try it -- and he had had success for over two years, was it? I can't remember all the details now, but hadn't he been able to stop three different cycles with shrooms and the fourth attempt bombed? I could check back through "Ueli's Archives" to verify those numbers, but you are probably able to provide them to us more rapidly than I could. You are quite correct that in Mike's case there was no possibility of any drug interactions at all. The fact is that they worked great for a few cycles, then did nothing. Mike did nothing wrong on the final attempt -- the shrooms just stopped working. And I have to admit that worries me, because if they stopped working for Mike, they could stop working for me, too. And I really, really don't want to have to go back to prednisone and Imitrex (the only two things apart from psilocybin that have ever worked consistently for me). My bank account just couldn't handle it. Quote:
I agree. That is one reason I am pleased the Harvard clinical study will involve LSD as well as psilocybin. I am very anxious to see the difference between the two. To the best of my recollection, we have yet to see a report of failure to break a cycle with LSD, but there have been a mere handful reporting on their experiments with LSD, and almost no followup reports from even that few, so drawing any kind of conclusions from that small sample is a fool's game. Personally, I would be astonished if either one proves 100% effective on 100% of the subjects -- chronics especially. Cluster headaches seem to be just too refractory for any single medication to conquer every time. I hope I'm proven wrong, but I'm not holding my breath over it. pinky |
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Title: Re: My first dose... Post by Flash on Mar 27th, 2004, 5:54am on 03/26/04 at 21:29:34, Eeyore wrote:
Do not worry too much about low levels of hallucinogenic effects. The only advantage to those effects is that it demonstrates that you have ingested psilocybin. I do really well on low doses with low effects. The immodium should make no difference as the psilo was already in your bloodstream by the time your poopchute activated. Runny bum is relatively common esp since you powdered the shrooms... think about it. One other thing about tripping - the 'side' effects are rarely consistent. Once I ingested the equiv of 0.5g(d) and giggled intensely for over an hour. Another time I did double that and barely noticed it. The thing to do now is try and adhere to some basic routine, esp regarding sleeping and mealtimes. Allow your system to settle down. No more than 7 hours sleep, and keep the hour regular. Sipping will not rock the boat, so I reccomend mixing up a batch and taking small sips before bedtime, should you wake during the night, first thing in the morning, and perhaps once during the day. Also sip immediately you feel a shadow or headache coming on. Be sure to keep regular mealtimes, and never go hungry. It may even be worth eating 5 smaller meals each day. Remember that a meal can equal a milkshake and ham sandwich, no necessarily a full roast chicken dinner. Hope this helps. Flash |
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Title: Re: My first dose... Post by Eeyore on Mar 27th, 2004, 9:27pm Update: I had an attack at about 3am this morning (Kip8-9), it was a killer, but was able to abort with 30min of O2. And I just got over an attack (Kip4), aborted with 20 min of O2. Thanks. - Eeyore - |
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Title: Re: My first dose... Post by Pinkfloyd on Mar 29th, 2004, 1:11am Any update Eeyore? PF |
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Title: Re: My first dose... Post by Eeyore on Mar 29th, 2004, 2:34pm Update: OK, I know I was supposed to wait a good five days....but I didn't. We were at the bar Saturday night and it was extremely boring and all I could think about was my head and how much I wanted to jump to next Thursday so I could eat some more and be that much closer to hopefully getting rid of my attacks. So while we were throwing darts I mentioned this to a buddy and he said that he never had a problem taking shrooms a day or two apart when he was younger. So at about 1 am we left and waited for another buddy to get out from behind the bar and we chilled and sat in his driveway all night long shroomin. We dosed at about 2:30 am I decided to up the dose a little and ate 2.5 grams and gave them each 1.5 grams. I felt only slightly more effects than I did the first time when I took 1 gram. This time I actually saw some visuals for the first time and laughed a lot more. Everything went perfectly. Unfortunately I went home at about 10:30 am the next morning and went to bed to awake at about 1 or 2 pm with a kip 9 that I wasn't able to abort, but besides that, I haven't felt any shadows at all. This week I'm going to really keep my head straight and get a good 7 or 8 hours of sleep a night, not drink at all, and eat well. I'll see how this week goes and plan to dose Thursday during the day after I awake with 2.5 grams. Talk to ya'll later. - Eeyore - |
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Title: Re: My first dose... Post by Flash on Mar 30th, 2004, 6:00am LET IT SETTLE! Too much shrooms is prob worse than no shrooms, they put a lot of strain on your body. IMHO their function is to kickstart your brain into rebalancing itself. Depending on how far out of whack it is, this might take a few days. I fear that everytime the process is restarted there is also the danger of resetting the clock. Let is tick for at least 5 days, and preferrably 7. If you aren't cured by day 7 then hit the fucker again. |
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Title: Re: My first dose... Post by Margi on Mar 30th, 2004, 10:43am on 03/27/04 at 00:01:49, pinksharkmark wrote:
Hi, Mark :) yes, we THINK it kept him in remission - it definately did make a difference for him. I really hate to be the fly in the ointment here because I think you folks are doing some astounding and honourable research but... when Mike first dosed, he was at about an 8 month remission pattern. He is now at almost exactly 2 year remission pattern - seems to be something that happens to clusterheads once they pass forty? So....was it the shrooms that kept him in remission for those 2 years, or was his pattern just changing? Did the shrooms change his pattern? So many questions. I hope they continue to work for you too, Pinky - and for all the other success stories out there. And, Eeyore - yes, that "runny bum" as Flash so eloquently put it (LOL) - I heard other clusterfolk mention that lovely little side effect, as well. Be thankful that you didn't become liquid at both ends - however, that usually only happens at higher doses. PLEASE heed Flash's advice though on dosing. :o |
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Title: Re: My first dose... Post by Eeyore on Mar 30th, 2004, 2:42pm Will do Flash... I guess I got a little over eager... by the way, I've only had two attacks since the last dose I took on Saturday night (Sunday 2:30am), but the shadows are strong and constant. I will dose next time after a full 7 days on Sunday, that is if I'm still getting hit (fingers are crossed). Talk to ya'll later. - Eeyore - PS- Does anyone know what happened to the shroomery? |
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Title: Re: My first dose... Post by Pinkfloyd on Mar 30th, 2004, 5:08pm on 03/30/04 at 14:42:18, Eeyore wrote:
It comes and it goes. Several different problems. Both technical and personal. You would think that everyone there would be enlightened enough to get along but I guess, just like everywhere else in this world, some people are more enlightened than others. Good luck Eeyore..hope the improvement continues. ;;D PF |
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Title: Re: My first dose... Post by Helpless on Mar 30th, 2004, 5:28pm Hope your head gets better but try not to over do it.... take your time and just let it happen .... :'( Helpless |
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Title: Re: My first dose... Post by Flash on Mar 31st, 2004, 4:04am If your shadowsare constant then try implementing a sipping regime. 1 sip first thing in the morning, then some food within 15 mins. Likewise at lunchtime. Likewise at dinnertime. Then a sip just before bed. Don't brew up too much at a time because it will go off. Flash |
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Title: Re: My first dose... Post by Eeyore on Apr 4th, 2004, 8:48pm OK, so I dosed again this weekend ... I went ahead and took 3 grams with a buddy of mine, he had 3 grams too. He hit a good solid level 3 trip for a good 6 hours. As for me? I barely hit a level 1 and it only lasted about 2 hours. I was sort of bummed about it, but at least I felt some of the effects. I was reading the net and I saw that some people say that they have no problems dosing while on Verapamil and some do. I detoxed off of all my meds except my Verapamil. Do ya'll think that it might be interfering with my doses? Should I detox off of it three days before I dose again? Oh, and my head is a lot worse. I'm getting hit 3 or 4 times a day wit kip7-9's and 50% of the time I can't abort with my O2, especially when I get hit at night. I hardly ever got hit at night before I started dosing. I'm planning on dosing again next Saturday with a good 3.5-4 grams of Puerto Ricans instead of the Equadorians and detoxing off my Verapamil starting Wed. Last time I was off all meds I was getting hit at least 8-9 times a day with kip 8-9's. I'm really at my wits end and am hurting all the time. I tried sipping but I did not notice a difference at all. If it did anything, it made things worse. Me being bipolar and off my lithium has really been hard for me lately. My depression is overwhelming and I can't stop thinking about what I'm going to do if this doesn't work. I'm just so sick and tired of this ... I just want to go back to school and live a life without limitations ....... Talk to ya'll later. - Eeyore - |
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Title: Re: My first dose... Post by Margi on Apr 5th, 2004, 8:58am on 04/04/04 at 20:48:57, Eeyore wrote:
You DO know that you should NOT just suddenly stop taking Verapamil, right? It's a blood pressure lowering drug and stopping suddenly could cause your blood pressure to spike and .... that can be fatal! :o My husband just did the verapamil taper and he waited three days between decreasing dosages. It took him a couple of weeks to get totally off it (but he was at 720mgs when he started the taper). I'm sure you could do it a little faster than that but PLEASE check with your doctor before you just suddenly quit, ok? |
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Title: Re: My first dose... Post by Bob P on Apr 5th, 2004, 1:10pm Eeyore, You may want to take a step back and rethink things. You're bipolar and off your medications to do the shrooms? Your depression is growing severe? You seem to be more interested in the level of your trip than anything else? I'd hate to see things turn out REALLY bad for you in this. |
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Title: Re: My first dose... Post by Margi on Apr 5th, 2004, 1:45pm yikes, Bob - good catch! I stopped reading when I saw that he was going to come off the Verap. Eeyore, did you tell any of the folks helping you that you were bipolar and on lithium BEFORE you did any of this? That's VERY dangerous, just arbitrarily stopped meds prescribed for something other than clusters! Sober reminder that we have to be SO careful before we start pushing folks to get off their meds - this IS the internet, remember!! |
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Title: Re: My first dose... Post by Pinkfloyd on Apr 5th, 2004, 6:00pm on 04/05/04 at 13:45:57, Margi wrote:
*sigh* If you read the thread you won't find where anyone was asked about detoxing. Eeyore....as BobP said....take one giant step backward! Taking a dose just because you're bored and your friends want to trip....is NOT on the website as a suggested dosing regimen. I strongly suggest you get back on your "prescribed" medications. NOW Clusters are not something that usually go into lasting remission so you have plenty of time to study the subject and THEN decide IF you should ever try psilocybin as a treatment option. PF |
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Title: Re: My first dose... Post by Melissa on Apr 5th, 2004, 7:28pm Eeyore, PLEASE get back on the lithium. I didn't have a mom that was bi-polar and not learn anything from it. I know what can happen when you go off of your meds. I am so afraid that you are going to end up in a bad place, and I don't mean the psych ward. Please check in Eeyore, ok? ...Mel |
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Title: Re: My first dose... Post by Eeyore on Apr 6th, 2004, 2:43am If you are going to read this, please, read all of it. on 04/05/04 at 08:58:14, Margi wrote:
I did talk to my neurologist today and he did in fact tell me that 3 days was much too fast. We decided to taper off of it over a 3-week period. on 04/05/04 at 13:10:17, Bob P wrote:
Yes, I'm bipolar and off of my lithium. I have read that it will interfere with the treatment that can possibly end one of the most painful conditions known to man. I think, (as my doctors, family and friends do), that it is worth a shot. on 04/05/04 at 13:10:17, Bob P wrote:
I think I said overwhelming. And I was referring to the fact that it is depressing that I'm on my way to my 5th dose and things are getting worse and I have yet to reach any where near the trip level needed for a chronic to break the cycle. I should have made that a little more clearer to keep you all from thinking that I going off the deep end, I was in a low when I typed that. on 04/05/04 at 13:10:17, Bob P wrote:
Are you trying to insinuate something? I think that was a stab at me, how insulting. Yes, I am interested in my trip level. Correct me if I’m wrong, but in most all cases, chronics must reach a level 2-3 trip to break the cycle, correct? This is my concern in my last post, cause I have barley got to a level 1 trip. on 04/05/04 at 13:10:17, Bob P wrote:
Thank you for your concern, but my parents and I have not been preparing for over a year to do this for me to stop now. on 04/05/04 at 13:45:57, Margi wrote:
OK, look. I talk to my neurologist and my psychiatrist every week. About 3-4 months ago I tapered off of my lithium and my verapamil over a months time, and as I said before, the pain was too much and I got back on my verapamil. I figured I could do this cause I have read that some people have had success with the treatment while on verapamil. on 04/05/04 at 13:45:57, Margi wrote:
Just for the record, no one pushed me. After reading the information over and over with my parents, my doctors and I that it was worth a try. |
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Title: Re: My first dose... Post by Eeyore on Apr 6th, 2004, 2:46am on 04/05/04 at 18:00:06, Pinkfloyd wrote:
Actually, I think you and I discussed it several months ago through e-mail. It was either you or PinkSharkMark; I always get you two confused. on 04/05/04 at 18:00:06, Pinkfloyd wrote:
Excuse me? I dose with my friend because it makes me feel more comfortable. Because I am bored? Are you referring to the time I decided to dose when my buddy and I were at the bar? I admit I was over eager to up the dose to prepare my mind for the higher dose that appears to be needed for chronics to break the cycle. I can't believe you just typed that. That hurt. on 04/05/04 at 18:00:06, Pinkfloyd wrote:
I have not spent the last two years convincing my parents and doctors to back me on this, study the information over an over, grow ounces of shrooms in my parents house, and get up to my 5th dose to turn back now. on 04/05/04 at 18:00:06, Pinkfloyd wrote:
Are you suggesting that I have not studied the subject? Are you trying to insinuate that I just jumped into this? I have dedicated over a year to educate myself, my doctors, and my parents on the subject thoroughly and I will not sit on my ass and do nothing while I scream in pain night after night. on 04/05/04 at 19:28:32, Melissa wrote:
Well, since I am still going to continue with the treatment, I will stay off of it. I do not want to fall into a dark nightmare while dosing as I did back in high school when I took 3 hits of acid. My parents and doctors are with me on this one. on 04/05/04 at 19:28:32, Melissa wrote:
I am bipolar and I also know a little something about it. I know what can happen when I'm not on my lithium, but I can't sit on my ass and not try one of the most effective treatments concerning clusterheadaches. on 04/05/04 at 19:28:32, Melissa wrote:
I appreciate your concern, but I assure you that my doctors, family, friends, and myself can handle what ever come out of this. To them and me, it will all be worth it if I can just get my life back. Now, if any of you reading this feel as though I was upset or angry, I apologize. But dam it, I found some of that a little insulting. If you guys do not want me posting here, then feel free to just tell me so. I AM going to continue this treatment with my neurologist’s support, my psychiatrist’s support, my families’ support, and my friend’s support. If you don’t want to support me and my conquest to end this nightmare, then tell me so. I’ll check back next week after I dose again on Saturday. I’m out. - Eeyore - AKA Charles - |
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Title: Re: My first dose... Post by Giovanni on Apr 6th, 2004, 3:33am Eeyore, Everybody here are wishing you the best of luck with this therapy, but are concerned about your withdrawal of certain medications prescribed for other conditions. There is no malicious or ill intent here with the advice you have been given. John |
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Title: Re: My first dose... Post by Eeyore on Apr 6th, 2004, 3:56am Look, I'm going to just step away from the PC for a long while and let my girlfriend post my progress from now on. She posts as Helpless on the supporters forum. Her and I have been going through a little rocky time here lately, as you can tell from her last couple of posts. She will post an update after the weekend. I apologize for getting anal in my last two posts. I must admit, I haven't been myself the last couple of months. I'll be in the corner if anyone needs me. Talk to ya'll later. - Eeyore - |
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Title: Re: My first dose... Post by Pegase on Apr 6th, 2004, 8:44am Im with you dude... dont let people discourage you... I also planning doing the alternative treatment one day so i'd like to know about your progress... If someone is not interested in the alternative treatment... they should'nt post... IMHO;-) Pegase |
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Title: Re: My first dose... Post by Bob P on Apr 6th, 2004, 8:54am Quote:
I'll leave this to one of the busters to answer but I don't recall reading this. I've read that it takes multiple doses but not higher doses. I may be wrong though. My mind is old and failing. |
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Title: Re: My first dose... Post by Melissa on Apr 6th, 2004, 9:20am Eeyore, all I was doing was showing some concern for you. The fact that you took it defensively, makes me realize you don't want my concern or my help. Hey, that's fine by me, no skin off my back. I really wish you much success in whatever treatment you follow. May you have many PFDAN's and your wonderful supporters always by your side. Take care, :)mel |
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Title: Re: My first dose... Post by Margi on Apr 6th, 2004, 10:24am Hi Charles - I seem to remember you posting a few years ago here. Maybe I'm wrong, but I do remember a Charles about your age. I'm sorry you've had so much pain in your life, I honestly am and want you to know that none of us here mean you any harm. However, I have a really hard time swallowing the fact that any medical professional (neuro or psychiatrist) with any credibility would give anyone with bi-polar disorder their blessings to stop the one drug that regulates them, in order to experiment with a controversial and illegal treatment (no offense meant to Clusterbusters). Parents, maybe, but doctors? Come on. Sorry, I don't buy it - feel free to flame me all you want. A medical professional would be setting themselves up for a case of malpractice so fast, it would make your head spin. They COULD be held liable if the absence of lithium in your system caused you to bring harm to yourself or someone else. I'm just worried others out there with similar condition will think it's ok. It's not. And Bob's exactly right, here - I can't remember EVER seeing any of the shroom gurus suggesting that chronics need to reach a higher trip level to find relief. In fact, it's just the opposite. That was the "selling feature" of this whole treatment - was that all it takes is a 1/4 of the recreational dose to find success. For chronics, more doses may be needed. "More" means frequency not strength. By saying that a higher dose is needed, you're muddying the waters of what clusterbusters is trying to achieve, Charles. In your very first post in this thread, you say that your friend suggested you increase the dose. I doubt that friend was part of the clusterbusters team, was he? Clusterbusters is doing fabulous work in their efforts to find relief for clusterheads and their research is certainly NOT about reaching "highs". Isn't there a risk of psychosis (or psychotic episodes) in taking higher doses of hallucinogens, as well? I'm honestly asking that question.....I'm sure I read that somewhere. Wouldn't that risk be heightened in someone with a pre-existing bi-polar condition? Aren't you playing with fire here? I honestly hope you do find pain freedom safely, Charles - and I hope YOU have read this entire post as well. |
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Title: Re: My first dose... Post by Eeyore on Apr 7th, 2004, 1:48am on 04/06/04 at 10:24:58, Margi wrote:
I did not say that they gave me their blessings. I said that I had to convince them to back me on this. I had to convince them to continue to see me after I told them I was going to stop the meds so that they could monitor my health and see my progress, if any. Do you really think that they would put their practice at risk, of course they advised me not to do it, but frankly, a patient has every right to not take medication if that patient wishes to not do so. on 04/06/04 at 10:24:58, Margi wrote:
What, do you think they signed a waver that said that they approved of me going off of my meds? I have every right to not take a medication prescribed to me. Though my doctors never recommended that I go off of my meds, they are still backing me up and wish me the best of luck with my conquest. I check in with them every week and give a full report as they ask me to. They are not liable for the decisions I make. on 04/06/04 at 10:24:58, Margi wrote:
Dam, you are so wrong... I think you should read this... http://www.clusterbusters.com/treatment.html ...and this... http://www.clusterbusters.com/faq.html#7 Here it is, just in case the link is down... Quote:
Quote:
I think that states that chronics must take more, yeah, I think it does. Would you look at that. Now since a recreational dose is about 2.5 dried grams, according to multiple sources (level 3 out of 5 is 2.581 dry), that means that a chronic must ingest on average, 1.25 grams, sometimes less, sometimes more to break the cycle. Now taking a look at this trip level calculator, http://www.shroomery.org/index/par/12195, a level one trip with dried shrooms is, on average, .86 dried grams. A level 2 is, on average, 1.462 dried grams. So this brings me back to my original concern. I assumed that if a chronic wants to break the cycle, he needs to hit between a level 1 and 2 trip. Please correct me if I'm wrong. I, on the other hand, have not even hardly hit a level one, hence my concern with my trip level. Does everyone understand what I have been getting at? Do I need to hit a level 1-2 trip to hopefully break the cycle, or does it matter what level trip I am at? I have taken a high dose of 3 grams and hardly reached a level one. This is what I posted about originally, with no answer. Is my verapamil interfering in some way do you think or what? Should I be concerned with my trip level, does it matter? Should I be concerned with how much I take or the effectiveness it has on my body? Please someone answer me? |
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Title: Re: My first dose... Post by Eeyore on Apr 7th, 2004, 1:53am on 04/06/04 at 10:24:58, Margi wrote:
Higher doses, higher than what? A level five trip, on average, is a dose of 5.335 grams dried. The highest does I've taken is 3 dried grams. Risk of psychosis or psychotic episodes? What are you trying to scare people? Please, go find where you read that and post it on the board. Read this... http://www.clusterbusters.com/hallucinogens.html#myths The only thing I see that might concern you and others is... Quote:
I personally think that is a risk I am willing to take to free my self on this nightmare I am in, don't you. I am willing to die for a pain free life and I know that there are allot of others who agree with me. I have a chance at living a normal life. I have a chance to smile again. I have a chance to live. on 04/06/04 at 10:24:58, Margi wrote:
I will find my freedom, one way, or another. - Eeyore - |
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Title: Re: My first dose... Post by Pinkfloyd on Apr 7th, 2004, 2:43am Eeyore, my friend, you were doing so well until you typed that last line. And you think we shouldn't worry about you? C'mon man. We're ALL here to help you in any way we can. All previous comments by everyone were only for that purpose. When we read though the evolution of your posts on this thread, we can see some things that are red flags. (red flags to us....we aren't living in your skin and we're trying to gage our responses based upon what we can see and feel through the internet) They just cause us to respond a with more urgency. Adds some trepidation to our responses also. As to my remark about "being bored"....you did say those words and they way I read it....boredom was a contributing factor in your decision to dose earlier than you had previously stated you would. I can only base my responses upon how *I* read what you're trying to say to us. I don't believe the verapamil has anything to do with the trip levels you are reaching. I believe it is more from the number of doses you've used. You would probably need to space them out further to get more effects. That said, I don't believe, again based upon your descriptions of the effects, that you need to reach a higher level than you already have. AS flash said in an earlier response, the trip level is less important than the resulting effects on the cycle itself. Many people have reported complete success with much less "trip effects" than you have reported. You didn't state you had been, but IF you were also drinking alcohol during this time, before, during and/or after the treament doses, this probably isn't helping break the cycle and is more likely aggravating the cycle and making it more difficult to break. As to the lithium.. There is a big difference between detoxing off lithium that you are taking to treat clusters and detoxing off lithium you are taking for any other condition. It is the same as people detoxing off of verapamil if it's being taken for a blood pressure problem unrelated to the clusters. If the clusters are improving, you may have already taken enough doses to break the cycle and it may fade away. More doses may prolong the cycle and you won't know that uless you give things time to settle down. It could be that you could get back onto the lithium without disrupting the work the psilocybin has already done. As a matter of fact, it may help in breaking the cycle faster. People report that even if psilocybin doesn't completely break their cycle, their regular meds work much better. I assume you will be going back onto the lithium even if you break the cycle, so its not as if you are trying to remove it from your system permanently. I'm not sure when you last spoke to your doc about your detox from lithium, but I would suggest talking to him about how everything is going for you now. He knows your complete history and since you have discussed this with him, he might have some helpful advice. Even before the lithium/bi-polar subject came up in this thread, you were advised to "give it a rest" If you take this advice, there is no reason not to get back on the lithium. Hang in there if you want to talk, PM me and I'll give you my phone number. If Helpless wants to talk to me...have her PM me and I'll send her my number. PF |
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Title: Re: My first dose... Post by Eeyore on Apr 8th, 2004, 12:49am Thanks for that post Pink. I need to not be in such a hurry. I contacted my psychiatrist today. I have an appointment to see him next Wednesday. I have decided to just chill and "give it a rest" for a couple of weeks and see how I feel at the end of the month before I make a decision to dose again or to go back on my lithium. But, I would really like to show you guys where I got my concern about the trip level I was reaching... The following is at the bottom of section 5.2.1 or the clusterbusters FAQ... Quote:
All I figured was that if I were not hitting that trip level, then I was not maximizing the possibility that the treatment would work. And for the life of me, all of us here want it to work. I'll check back in a week or so and let ya'll know how my head is. As of right now, it's really bad. I've been hit 5 (kip6-7's) times today with no relief of shadows. It's only gotten worse since I started to dose. The Oxygen is actually taking longer to abort them, 25-30 minutes. I sure hope it gets better. Thanks. - Eeyore - |
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Title: Re: My first dose... Post by Pinkfloyd on Apr 8th, 2004, 1:23am I think there was just a combination of a lot of things Eeyore. Give me a call, if you'd like (or I'll call you) in a few days and we can discuss it. Hopefully the cycle will have cooled off a bit by then but if not, we can discuss options. take care and keep the faith!! PF |
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Title: Re: My first dose... Post by miapet on Apr 12th, 2004, 9:15am Okay, so I just re-read this whole thread . . . How are you doing eeyore?? (helpless, are you writing for him right now?) I hope these past few days have seen your h/as settling down, and you are seeing improvement! Margi . . .I didn't respond the first time I read your post (about remission and over 40) but, when I read it today, I decided I had to . . . .IF that happens to a person *YAY* . .I just wish it happened to everyone .. .I know I know, not everything works for everyone .. .more of those blanket statements yada yada . . . EEYORE . . . hang in there . . .and take care of yourself!!! miapet |
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Title: Re: My first dose... Post by Helpless on Apr 13th, 2004, 1:48am This is Helpless..... I will be posting for Eeyore (Charles) for abit..... Since he has started doseing if anything things have gotten worse for him..... He has been getting hit 3-4 times a day with most of them happening at night...Befor he would hardly ever get hit at night.... Now he gets them very often and by the time he awakes and gets to his O2 the CH has a very good hold on him and is nearly full blown..... By then the O2 only lessens the pain but doesnt stop it all together..... I have noticed that the O2 doesnt seem to affect the CHs the way they did befor he started doseing either.... It takes sometimes twice the amount of time or more in order to help him now even when he catches it when it first hits....He has let me and his parents know that the pain has increased..... In the past he could catch them at the first sign and they hardly ever got over a Kip6 , now they seem to hit him at least at a Kip 8 - 9 befor he can get rid of them..... Things have gotten much worse for him since he has started the doseing... We alll hope that things will take a turn for the better for him.... It means alot to him and to me that he has everyone here for support...... I would like to think everyone here for their support and I will be posting any updates good or bad..... He needs all of the support he can get right now so thank you ALL once agin..... Wishes to all the sufferers and supporters many Painfree days and nights.... Helpless |
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Title: Re: My first dose... Post by Pinkfloyd on Apr 13th, 2004, 2:01am Hi Helpless, Sorry to hear things haven't gotten any better yet. Hopefully he can discuss this all with his doc on Wednesday and find some help with these attacks. thanks for keeping us informed and please continue as you can. PF |
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Title: Re: My first dose... Post by Helpless on Apr 13th, 2004, 10:14pm Thank you for your concern and support Pinkfloyd... I will keep you all posted.... And may you have many painfree days and nights..... Helpless |
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Title: Re: My first dose... Post by Helpless on Apr 15th, 2004, 3:20pm Nothing really to report... Just that he has not been sleeping affraid that when he does the Beast will attack..... And sure enough when he does fall asleep it is there to grab him :'( ..... I will keep in touch about it getting worse or ( i hope and pray) better...... Painfree days and nights to all...... Helpless |
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Title: Re: My first dose... Post by 1MajorPain on Apr 19th, 2004, 7:42pm Helpless.....how's Eeyore, better, worse? Major |
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Title: Re: My first dose... Post by Helpless on Apr 20th, 2004, 11:55am sorry really no change so far... hopeing to have a change for the good soon.... painfree days and nights to all..... Helpless |
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