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Title: VENT: What's your Poison: Meds or Alternative?? Post by E-Double on Jun 3rd, 2005, 6:16pm Wanna hijack something?.. do it here and leave people's posts of exhiliration regarding their relief alone!!!! I wrote the samething in Joe's LSA thread......... Quote:
Eric |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by BikerBob on Jun 3rd, 2005, 6:45pm Eric, what do you mean by "risk tripping balls" ? Here is some data... http://www.clusterbusters.com/warning.htm Bob |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by LeLimey on Jun 3rd, 2005, 6:49pm Eric good for you! I couldn't agree more. I have my current options but I want all my future choices to be open. I'm grateful to everyone who is trying these things out. Its time to pull together not apart. |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by E-Double on Jun 3rd, 2005, 6:50pm on 06/03/05 at 18:45:26, BikerBob wrote:
Bob I did not mean anything other than the possiblilty of one catching a higher level trip than what was measured or anticipated......It is possible. I am all for it being used as a treatment and am fully aware of all of the research involved. This statement IS NOT MEANT AS ANYTHING NEGATIVE and I do apologize if it came out that way! Many props for all you do! Eric Edited to clarify my statement (with some past experience) again.... Not comparing the systematic dosing schedules of alternative treatments (which does appear in line with the way traditional medicine is taken) with recreational use, however, with one of my experiences I was the lone person to recieve the extreme magic mushroom from an eighth that friends were sharing....It was a tiny bugger that was just supposed to mellow me out and in fact sent me flying for a good 7 hrs. It was great but unintended.....So it is possible, just like any side effect from traditional meds that one is not supposed to get yet I for one will always be the 1 in 5 million stat. Again...MUCH RESPECT!!! |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Jonny on Jun 3rd, 2005, 6:54pm on 06/03/05 at 18:16:57, E-Double wrote:
Sorry Dude, didnt know we were not allowed to question others posts. My bad |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by BikerBob on Jun 3rd, 2005, 7:12pm There's a difference between questioning other's posts and saying "Your stats are bull-shit" (when they're facts) and exclaiming "Someones going to die!" Bob |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by E-Double on Jun 3rd, 2005, 7:15pm Questioning is one thing.... When people bring personal feelings (not saying you)into the equation it is no longer objective and "data driven" as everyone seems to act like they want! That is my only gripe with a lot of the threads whether it was Kim's or now Joe's. For all I know it will happen someday on mine. I'm extremely neutral for I am lucky to not have been a guinea pig for half my life like so many have been. I bare knuckled and unknowingly dealt with this until last yr. I have no feelings other than "TOUCHY FEELY" love for all of you! and I ain't no bitch!!! Just a shame when respect is lost or not shown. Respectfully, Ex2 |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Chillrmn1 on Jun 3rd, 2005, 7:29pm First, I would like to say I'm exhilirated for Joe and his success. Had it not been for Joe's, Langa's, and a couple others sharing their experience and results, I would have not tried and found success with LSA (HBWR) myself. Without trying to talk for any of these fine folks, I do feel this was one of their reasons for posting..........to let others know what worked for them. Please, Joe and Langa correct me if I'm wrong. Second, my poison is now alternative treatment and no longer the conventional meds available at this time. The Verapamil, Prednisone, Inderal, Lithium, Imitrex, etc., either did not relieve my symptoms, did cause uncomfortable and health risking side effects, or had to take in such large quantities and duration that, based on the producers warnings could/would cause bodily damage. Third, I tried one dose of LSA (4 HBWR seeds) three weeks ago and have been completely pain free with no attacks or shadows to date. I do not have any other data to be construed as "scientific", only my experience and results, and was detoxed off all conventional medications for 2 1/2 months prior to dosing. I am not pushing this on anyone, but just relating my experience. I feel debating all different treatments are healthy and a way to advance knowledge, but when insults are given and cheap shots are taken by people with hidden agendas, well..............I feel we should be above this since we're all in the same boat with this horrible disease and just trying to find relief. VENT OVER. |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Jonny on Jun 3rd, 2005, 7:54pm on 06/03/05 at 19:12:32, BikerBob wrote:
Everyone dies, its just a matter of when and why....No? Cant beat that stat ;;D |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Kris_in_SJ on Jun 3rd, 2005, 7:54pm Wow - I've been away for a couple of weeks. Looks like I need to play a little "catch-up!" I just think we all need to pursue what seems best for us at certain times of our lives. There might be some unwilling to try alternative treatments because they have children in the house, bad past experiences with recreational drugs, etc., etc. Each and every day, I thank my higher power that I'm episodic and have time to absorb all the new info that appears here and at clusterbusters. I'm keeping all options open for the next time around. Without meaning to sound like a mediator and the Libra that I am, can we all agree to disagree sometimes? Just listen to each other and learn? Thanks for the thread Eric, Kris |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Langa on Jun 3rd, 2005, 7:56pm E2 you stole my idea...I was going to start a thread like this since there's so much infighting about meds vs. alternative. ;) For me, my poison is alternative...LSA seeds to be exact... ;;D And whether people like it or not, I need to be happy about being PF - absolutely a personal choice - oh by the way, 7 weeks PF yesterday ;;D - especially when prior to that I wanted to crash into a tree I was so fucking miserable. And i'm going to shout to the world i'm PF if it means others will have a chance to be too... Love, Langa |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Jonny on Jun 3rd, 2005, 8:28pm on 06/03/05 at 19:54:31, Kris_in_SJ wrote:
:-X .....Meaning......Nuff said! |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by sandie99 on Jun 4th, 2005, 4:00am on 06/03/05 at 18:49:10, LeLimey wrote:
That sounds good... :) |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by karma on Jun 4th, 2005, 7:32am The meds. vs. alternatives question is a good and valid one. Its unfortunate that the discussion ALWAYS deteriorates into a pissing contest. A handfull of people from both sides seem to derive great pleasure in dergrading the discussion by playing with words or short sentences and completely ignoring the intent of a reply. When I first came here, not long ago, I brought up this very same discussion. I did it because I followed what seemed to be pretty sound advice on treatments and prevents. (Yes I did do it through a doc) The result? I got hit worse and longer than ever before. I quit the meds and soon reverted to what I was accustomed to. I read and read and soon realized that those that have CH the worst are taking the most medication. That is a FACT. Why that is, is an important question that needs to be answered. I began to ask questions from the non traditional side of the fence and got called everything from a tree hugger to a brain dead hippy type. Whats the moral of my story? You can't teach and old dog new tricks and if you back it into a corner it will try and bite you. I'd rather walk around the dogs than through them but sometimes there mighty hard to ignore. |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Chillrmn1 on Jun 4th, 2005, 8:15am Hey BobP, Where are you? This thread is a perfect instrument and opportunity for you to explain to us whom don't understand what your program or agenda truly is. I am confused by you. You seem very kowledgeable and sure you are, but you make certain valid statements during one post and then completely turn tables on your next and contradict the previous. Is this a bait-and-switch? Regardless of your feelings on traditional, alternative, or other treatments, you have made certain statements that may influence others away from a treatment that would have or could be effective for them when no other is. Maybe it's just a case of not being able to articulate your thoughts appropriately, and I'll quote from your previous posts: "You guys are a really bigger bunch of morons", "I think the drivel you idiots spew", "Makes you a total A*S*S*H*O*L*E", and "Now all the touchy/feely types" for example. This is not a personal affront on you by me and should not be construed as such. I am just asking you to clearly explain your position or agenda on these various treatments to clear up mine and others confusion with you. I've read your posts for years, although I only registered on the site last year, I'm not new here. And BobP, I sincerely wish you relief from this disease and pain free time. Now, will you come out to play today? Bob |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by wetdogtwo on Jun 4th, 2005, 1:18pm My feeling is that the issue is distinguishing between hard statistical data and personal experience. The problem is, there haven't been a lot of clinical trials on alternative therapies. For those of us who are exploring this path, there isn't a lot of information available. So we look here. For me, this board is about sharing personal experiences. I'm not a doctor or scientist and I know that most people here aren't. Yet many people post their opinions as scientific evidence or dismiss other people's success stories as hogwash which leads to fiery barrages of angry posts. I am not running clinical trials with little CH-suffering mice, but I know that I have found success with alternative therapies. I dropped some LSA and am taking kudzu. I don't know which one is working (it's my first time doing either) but I don't care because I haven't had a headache for a week and a half. I know these herbs are drugs and have side effects, but based on my limited research, they seem safe to me. So far so good. Your results may vary. Maybe there should be a disclaimer in the Meds section that explains to readers that they should be cautious and consult doctors, etc. Does anyone actually read disclaimers? Anyhow, all I know is that if it weren't for this message board, my thigh would be covered in Imitrex bruises and I'd be banging my left eye while in the fetal position right about now. People sharing their experiences with all kinds of therapies helped me gauge what might be effective and within my comfort zone of experimentation. And it worked. So thank you all for sharing. Marty |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Jonny on Jun 4th, 2005, 2:30pm on 06/04/05 at 08:15:17, Chillrmn1 wrote:
Shhhhh...hes sleeping, you dont want to wake the big dog......he bites ;;D |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Marc on Jun 5th, 2005, 1:34am Quote:
Nahhh, he just asks a lot of questions and won't accept "fluff" and glittering generalities for answers. Besides, who else can get otherwise sane and rational people to start acting like screaming lunatics so darn quickly? ;) It's just that some folks don't recognize the difference between a foil and a broadsword – or perhaps, when to use which..... Marc |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by karma on Jun 5th, 2005, 8:23am Quote:
This isn't about one person. There is a predictable lack of participation from the antoginists on this thread. Not really surprising is it? |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Jonny on Jun 5th, 2005, 10:04am on 06/05/05 at 08:23:15, karma wrote:
YEAH!!!.....Those Bastards! ;;D |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Candycane on Jun 5th, 2005, 6:35pm Mine is also the alternative, WHY? Because it worked. I find it all kinda funny sometimes here reading everyone fighting back and forth since we are all in the same place? But we do live in the good old USA ;;D Still PF by the way 8) |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by lionsound on Jun 5th, 2005, 7:27pm Bravo, EE !!!!! TO ME a drug, is a drug, is a drug, from scripted meds to alternatives to natural remedies to vitamins to alcohol, caffeine and nicotine. Anything can interact with anything else and cause side effects and we'd better be careful and we'd better informed no matter what we dare to try. Everyone has their own personal road to Pain Free Happiness. How they arrive or attempt to arrive in the PF zone is their choice entirely. I don't know about everyone else, but part of my treatment plan is support....ch.com and the friends I've made here are directly responsible for me feeling better even when I feel like crap. Be well and PF, Rori |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by E-Double on Jun 5th, 2005, 7:35pm on 06/05/05 at 19:27:09, lionsound wrote:
That's what I'm talking about!!!! |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by burnt-toast on Jun 5th, 2005, 11:29pm Facing the facts of this lifestyle disaster we all live, there is basically nothing to treat CH that was specifically developed to treat CH. We are simply too low a sample of humanity to spend a lot of resources on. GOD, some neurologists still haven't even a clue about this condition. Our current lot in life is to accept second hand cast off meds., alternative treatments and surgeries that work for some but not for all - Treatments developed to treat someting else but somehow used in treating us. Hopefully through this site a few lucky folk find someting that ends up working for them. Meds, Alternatives, Surgery = no difference, the truth be told relief, no matter how obtained would be sweet. |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Pinkfloyd on Jun 6th, 2005, 12:27pm on 06/06/05 at 11:19:46, Bob P wrote:
Thanks Bob. So I guess you have all the answers to your questions then. I might as well close up shop. You seem to have missed a couple of my questions though...wanna give it a shot? on 06/06/05 at 10:45:57, Pinkfloyd wrote:
When you're done answering MY questions for a change, maybe you should read the selection criteria for ACP-103 and ask yourself why some of them regarding the patients recent medications exist. Now, if you'll excuse me, I'm going to get back to researching treatments for cluster headaches. thanks in advance for your answers Bobw |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Pinkfloyd on Jun 6th, 2005, 12:48pm on 06/05/05 at 23:29:35, burnt-toast wrote:
That may be what some people here want you to believe but that just isn't the truth. If YOU want to accept hand me downs that work poorly in many cases, that's your [collectively] choice. If you want to use what is currently available from the medical establishment, that is fine, and understandable and obviously your choice. Some of us find that *unacceptable* and are searching specifically for new medications that treat cluster headaches. You don't have to use off-label medications and consider that acceptable. You don't have to use the current list of alternatives and consider them acceptable. Those working on making them even more effective, whether it be psilocybin, LSA, Kudzu, magnesium, don't find the current results or availablities acceptable. Not trying to be argumentative. Just take acception to your use of the word accept. For the most part, your description of what your doctor can write a script for, is accurate. You [collectively again, not you personally] can sit back and take what "they" give you or you can go open up a window and shout at the top of your lungs, "I'm mad as hell and I'm not going to take it anymore." be well, Bobw |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Bob P on Jun 6th, 2005, 1:01pm Hey chillermn (Bob). 27 year CFC sucker here too. Where do I stand? I want everyone to be pain free by whatever means they choose. Even though a lot of people seemed to identify with it, the Ahole remark was aimed at one post in that thread which I interpreted to be an in your face instead of an honestly glad to be painfree comment. I have never said anything against the alternate treatments. I've used shrooms & kudzu and will try seeds in the future. I don't agree with what was an attitude in the past and still don't swallow a lot of the assumptions and hypothesis that are often professed as absolute fact. I will ask where they came up with that stuff and challenge them where I think they are not making factual point. Quote:
These statements aren't aimed at everyone. Nor are they aimed at those who use alternate treatments. They are aimed at the ones I speak of in the preceding paragraph (I did go a step or two farther than I normally do). I apologize for not being specific. That's about all there is to it chillermn. Now I've got to work on a replacement for a cascade ammonia system at our dairy. Any suggestions? Oh, and Marc is right. Sometimes I do it just to get everyone worked up. Why? Because it puts some life in the board and maybe even causes some to think a little deeper. Now I'll sit back and wait for comment from that idiot, moron, Flash! |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Margi on Jun 6th, 2005, 1:20pm I've been a pretty good girl keeping my mouth shut over this issue but I do have to speak up now. I've struggled constantly with some of the clusterbusters attitude that we must have "done it wrong" because the shroom treatment ultimately failed my husband. Personally, I take great insult at that summation and always will. I wouldn't be surprised to see either Pinkfloyd or Flash reload and shoot at me again, just to reiterate that Mike and I are too stupid to have done the procedure correctly. It honestly takes everything I've got not to re-enter the continual pissing match here when I see that pat answer: you didn't do it right. It's like fingernails on a blackboard for me! The perception I am left with is that some of the clusterbusters cannot and will not accept or believe that the treatment doesn't work for everyone. NOTHING works for everyone. Why is that such a difficult concept to swallow? Every single cluster sufferer or supporter here wants to find a way to end the pain. I read with great delight when I see Miapet posting that D is having continual success with shrooms, or that Nani is still pain free because of the Kudzu, or the recent success stories with the HWBR seeds. When we find our own personal magic bullet, we do tend to crow about it and urge others to try it. I admit that I, too, have fought tooth and nail to get others to try the lithium pulsing method, the water treatment, oxygen therapy, and, yes, shrooms, etc. Because those treatments HAVE worked for Mike in the past and I want others to experience relief too. However, all of these treatments have also failed Mike at one point or another, just as most cluster treatments fail most sufferers after awhile. What's the point of my post then? Keep searching for YOUR magic bullet, folks, and don't trash others for finding theirs. Accept your own personal defeats graciously and move on to the next weapon in your arsenal. Find your balance but don't chastize those on whom YOUR magic is lost. It's like that old adage: never try to teach a pig to sign, it will only frustrate you and just end up pissing off the pig. (I consider myself a pissed off pig after our experience with some of the clusterbusters.) edited to not paint the entire clusterbuster group with the same brush - the research and continual support they offer the successful participants truly is amazing. |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by seasonalboomer on Jun 6th, 2005, 1:27pm I'm scratching my head wondering where the old adage, "never try to teach a pig to sign, it will only frustrate you and just end up pissing off the pig." comes from. And I'm thinking who would ever try to teach a pig to "sign", they don't even have fingers or thumbs -- just those little hooves. Finally the typo revealed, it's "sing" -- which also seems silly, but more possible than "signing". |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Margi on Jun 6th, 2005, 1:31pm no, seasonal, I meant "sign". I think that would be even more frustrating than to teach a pig how to sing. Actually, I did it just to piss YOU off and see if you were paying attention. wondering why, though, you didn't jump on the fact that pinkfloyd doesn't know the difference between "accept" and "except". |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by seasonalboomer on Jun 6th, 2005, 1:37pm well then that would be the "new adage" as opposed to the "old adage".... ;) You got me! Maybe we should all just throw out old adages and make up new ones nilly willy, and always preface by saying "You know what they always say, early bird gets the paper from the driveway", or "Better a bird in the hand, than to flip someone the bird." ;;D would have mentioned the except/accept problem, but my spelling of those two words isn't always that acceptional itself. |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by vig on Jun 6th, 2005, 1:43pm Here's the lingering problem as I see it. BobP made these two claims and lets them stand looking like facts: "Because the psilocybin didn't work. Because the kudzu didn't work. " However, before that, here's what else he said... ----------------------------------------------- PSILOCYBIN = 5HT2 agonist KUDZU = 5HT2 antagonist Take 'em both at the smae (sic) time and no cigar for you. Margi asked: so, Bob, does that mean that they would cancel each other our, or does it mean that it's dangerous to take both? Guess it would be more like a race. Whichever one gets there first wins. Don't know that it would dangerous but probably not very productive. I'd say, like Floridian, pick one and give it a shot. ---------------------------------------------- well he not only did those two consecutively, knowing full well it would either be dangerous or ineffective, but he was also taking melatonin, cafergot, verapamil, and Amitryptaline. He ignored Nani's Kudzu advice, ClusterBuster's psilocybin advice and I'm assuming, his doctor's advice on proper drug use. He even ignored his own advice. How could he possibly know what worked and what didn't work? Which facts are incorrect Bob ? (You were the source of all the information) |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Bob P on Jun 6th, 2005, 1:46pm Quote:
Ya see chillermn. This is what I'm talking about. A complete lack of facts. I did do them consecutively. Not at the same time. How does that differ from what I said in what Vig quotes, where I talk about taking them at the same time. As for the other meds he mentions, I have taken them at one time or another. Sometimes even with the the shrooms or kudzu. As for shrooms and kudzu not working for me, they didn't. Are you to tell me I did it wrong Vig? |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by vig on Jun 6th, 2005, 1:49pm (that all came from the Kudzu thread) and if you can straighten out which drugs you took when it would be a great help. I'd love to see the overlaps more clearly and how much/when/of what you were taking. We at least know you took: Psilocybin (9 x .5g doses in a week of old stock) Kudzu Melatonin (9mg nightly) Cafergot (3 or 4 tabs a week) Verapamil Amitryptaline Oxygen Magnesium Imitrex Amerge AND Prednisone... I also noticed 'max 10g" and 'max 5g" Topamax too? for two days? all in the first month of your last episode, not just "at one time or another". So, again, how can you possibly KNOW what works and what didn't manner? |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Pinkfloyd on Jun 6th, 2005, 2:23pm on 06/06/05 at 13:31:24, Margi wrote:
This is great. Now we're getting grammer lessons. First BobP tells us we shouldn't use the word detox and now this.... [smiley=laugh.gif] I know the difference...do you. Since you won't accept my interpretation, I'll quote the dictionary. ac·cept ( P ) Pronunciation Key (k-spt) v. ac·cept·ed, ac·cept·ing, ac·cepts v. tr. To receive (something offered), especially with gladness or approval: accepted a glass of water; accepted their contract. To admit to a group, organization, or place: accepted me as a new member of the club. To regard as proper, usual, or right: Such customs are widely accepted. To regard as true; believe in: Scientists have accepted the new theory. To understand as having a specific meaning. To endure resignedly or patiently: accept one's fate. I was referring to the definitions in bold. ::) Bobw P.S. Yeah Bobp, we believe your motives. Answer my questions will ya? |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Bob P on Jun 6th, 2005, 2:36pm Vig, Here's the link to my diary. I haven't updated the online version in a while but the one on my PC is up to date. I'll update it tonight: http://www.pahlow.net/ch/ch_diary.xls |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Margi on Jun 6th, 2005, 2:42pm on 06/06/05 at 12:48:46, Pinkfloyd wrote:
Pink, I was taking exception to your use and spelling of the word "exception". It was actually a veiled shot at Seasonalbloomer because he's always so quick to point out my typos, but hey...thanks for taking the time to print out the dictionary proof of your error for me. with love, The Pissed Off Pig |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Marc on Jun 6th, 2005, 2:46pm I'm a little surprised that people even have to ask "Why try the alternative treatments without weaning off the other meds first" Any real Clusterhead who knows what a TRUE K-10 is like can answer that. The fact is that doing anything that is likely to bring on a "perfect 10" scares the shit out of me. Do the Verapamil/Triptans keep the beast at bay? Nope, he breaks through now and then, but I can generally avoid the biggies. Awhile back I got sick of taking all of this crap, so I started tapering off. Wow, was that an experience in testing my personal limits. I've got a couple of bags of seeds. They are damn near free, so why NOT try them in conjunction with the conventional meds? I'm working the doses up very slowly, I'll let you know if it works. If it doesn't, I'll have to take the next step of weaning off the Vera/Amerge just to see....... In the mean time, I'll call you an F'n idiot if you ask me why. Go ahead, try it...... Respectfully, Marc |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Margi on Jun 6th, 2005, 2:52pm psst, Marc, better get ready to be told you're doing it wrong. ::) I feel like Radar on M*A*S*H: wait for it, it's coming. |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Marc on Jun 6th, 2005, 2:55pm Margi, Actually I've discussed it with some of the folks posting here. I was given good solid advice that anecdotal data shows that it may not work. Fair enough. My whole point is that I'm doing it my way. If someone can't understand why, then they probably have never met Mr. 10 up close in person. Let alone of three of them back-to-back. Marc |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Margi on Jun 6th, 2005, 2:59pm on 06/06/05 at 14:55:39, Marc wrote:
I'm so sorry that you have, my friend. :( your continued strength is truly amazing and I hope you find your magic bullet soon. HUGS, Margi |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Racer1_NC on Jun 6th, 2005, 3:00pm Quote:
Well I'd say you are not one of the "touchy feely types" that BobP refers to in his earlier posts. Let's just all whip each other's a$$es into a lifeless, bloody pulp. That would be one cure for CH that would work on every one of us. And the best part, no one would be left to argue spelling or symantics for the obits.... Bill |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by seasonalboomer on Jun 6th, 2005, 3:03pm on 06/06/05 at 14:42:10, Margi wrote:
veiled shot? I only point out the ones that end up being entertaining. |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Pinkfloyd on Jun 6th, 2005, 3:07pm on 06/06/05 at 14:42:10, Margi wrote:
Actually I was admitting him into the club of those people that accept their fate.. ;;D "To admit to a group, organization, or place: accepted me as a new member of the club. And BTW, maybe you'd like to explain again why you're so pissed off at me. I'd rather not just accept the fact that you are. Is it just because of this ongoing spat with BobP? You seem to take it harder than he does. When did I ever blame you or your husband for any of the failures of his treatments? Why do you and Bob get so pissed when someone offers you advice? When your husband goes to the doctor and says, for instance, "the lithium isn't working" and the doc says, "let's try a larger dose" or other change, do you also get personally offended and think he's blaming him? Do you shout..."we didn't do it wrong?" Just wondering. I'm not taking that shot at you that you predicted in the other post. I'd really like to know what I've said that has been so offensive. Ya never know, I might even apologize if I can understand the complaint. Bobw |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Margi on Jun 6th, 2005, 3:25pm BobW, I'm just sick and tired of my posts being picked apart and criticized. I post facts of what has and hasn't worked for Mike and you always seem to feel the need to criticize/argue/augment what I've said. I didn't say anything about your spelling until Seasonal brought up a typo I made. Yet you chose to jump on me, for asking him why he didn't point your error out as well? Statements like you just made here: "When your husband goes to the doctor and says, for instance, "the lithium isn't working" and the doc says, "let's try a larger dose" or other change, do you also get personally offended and think he's blaming him? Do you shout..."we didn't do it wrong?" - well, you know what, Bob - whether it's your intent or not, I take offense at you assuming something like that about us. Call me oversensitive, but I find that to be extremely rude that you're assuming Mike and I are like that. You don't even know us! It's got absolutely nothing to do with all the crap that BobP continually receives. (Although he and I do have similar motivation for our frustration as we both have been repeatedly bashed because our results don't conform to clusterbuster doctrine - and we both were part of the original group of cheerleaders for shrooms.) I can't speak for BobP here - but I know it sure would be nice - just once - to hear a clusterbuster say 'hey, you gave it a good try. Sorry to hear it didn't work for you.' I guess that's MY biggest beef. |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Bob P on Jun 6th, 2005, 3:55pm Quote:
Yep. One of the many reasons I call him friend. Ain't nothin' worse than having a good, heated discussion and have a bunch of panty wastes jump in like Rodney King. "Can't we all just get along?" Like they're afraid of confrontation or something. Heck, we don't jump into the touchy feely threads and tell everyone to step it up a few notches (we just hijack the thread instead). Looks like stomper is getting some relief from the seeds while taking trex). We'll just chalk him up as a fluke like Sewell's patient who says the shrooms work better while on verap. Wonder if it's better to be a fluke or do it wrong? |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Margi on Jun 6th, 2005, 3:58pm on 06/06/05 at 15:55:46, Bob P wrote:
it's "panty waists", Bob. "Wastes" means.... Wait...maybe you know something I don't. Never mind. As you were. WTF. Over? |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Bob P on Jun 6th, 2005, 4:02pm What's a panty waist got to do with anything? I like the poopy pants angle. |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by seasonalboomer on Jun 6th, 2005, 4:09pm Please use the term in a sentence: "When the panty waste started flying, everyone was sure to duck so they didn't get any on them." |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Margi on Jun 6th, 2005, 4:12pm pant·y·waist (pnt-wst) n. 1. A child's undergarment consisting of a shirt and pants buttoned together at the waist. 2. Slang A boy or man who is considered weak or effeminate. ------------------------------------------------------------------------ panty·waist adj. The American Heritage® Dictionary of the English Language, Fourth Edition copyright ©2000 by Houghton Mifflin Company. Thesaurus Synonyms Related Words Antonyms Noun 1. pantywaist - a timid man or boy considered childish or unassertive milksop, Milquetoast, sissy, pansy coward - a person who shows fear or timidity. Personally, I prefer the term Milquetoast. It sounds so much more dignified. hey, dictionary quoting is pretty cool! |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Bob P on Jun 6th, 2005, 4:14pm Quote:
Both of which Michael Jackson is very familiar with. The Jackson/KMart bluelight special - Little boys underwear half off. |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by seasonalboomer on Jun 6th, 2005, 4:16pm throw many more definitions like that around and you're going to get sent to sensitivity training! |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Marc on Jun 6th, 2005, 4:31pm Man, I love this neighborhood! (Sorry Bob ;;D) |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by karma on Jun 6th, 2005, 4:36pm Quote:
Would this be it? Quote:
Quote:
Pretty neat trick this copy/paste thing. You can pretty much make it say what you want. No offense intended BobP. Glad you guys stepped up to the plate. There's allot of history here. |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Bob P on Jun 6th, 2005, 4:40pm Yep, that was it Karma. |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Jonny on Jun 6th, 2005, 4:45pm on 06/06/05 at 15:00:00, Racer1_NC wrote:
Please tell me I didnt miss the fun....Please! ;;D BTW..Did ya know that 02 causes rebounds?....But only if you do it wrong....LMMFAO...I kill me[smiley=laugh.gif] |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Bob P on Jun 6th, 2005, 4:48pm Quote:
Putting it in the wrong end again Jonny. Still missin those indo bullets I guess. |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Jonny on Jun 6th, 2005, 4:57pm on 06/06/05 at 16:48:46, Bob P wrote:
Yep, thats why im turning to the good stuff ;;D http://www.m90.org/view_image.php?image_id=5562 |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by thomas on Jun 6th, 2005, 5:09pm on 06/06/05 at 13:20:59, Margi wrote:
As far as I am concerned that's about all that needed to be said in this whole damn thread. Not picking sides here, Margi, love ya babe. And Bobw, I owe you more than I can ever repay. |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Lizzie2 on Jun 6th, 2005, 5:39pm on 06/06/05 at 17:09:06, thomas wrote:
That, and when something pisses ya off the first time you read it - maybe take a step away from the computer, take some deep breaths, count to 10, browse another site, go get a cup of coffee...something. :) If it still pisses ya off...then write what ya think - but sometimes I think we all realize a little after the fact that we may have misinterpreted something as an attack when it wasn't...or just didn't see it through the same lenses we saw it through later on. I'm not saying that's the case for everyone - but it does happen sometimes. :) I do like to go take the deep breaths once in awhile. ;) L2 :) |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Pinkfloyd on Jun 6th, 2005, 5:40pm on 06/06/05 at 15:25:43, Margi wrote:
I know the following statement can be now be viewed as arguing but....I think you have me confused with someone else. Just because you say it doesn't make it a fact....just ask BobP. It seems that I'm not the only one. Next time you want to get back at Seasonal, please leave me out of it. on 06/06/05 at 15:25:43, Margi wrote:
I'm sorry. I'm sure it was just a coincedence that it was my spelling you used to get back at SB. I'm sure there were only a couple spelling/grammer errors to choose from here. Sorry again. on 06/06/05 at 15:25:43, Margi wrote:
I know that Margi. It was a rhetorical question. I'm sure you don't act like that with your doc. My question was why do you take it as a personal afront when anyone here gives you advice. Or is it just advice from any clusterbuster's? If you don't ever want any advice, just say so. Thats cool. on 06/06/05 at 15:25:43, Margi wrote:
LOL....at least he never gives any. Have you ever told him that he used a "low blow"? on 06/06/05 at 15:25:43, Margi wrote:
OK, well here goes, but I thought that the shrooms did work for Mike for a while. Anyways...in all seriousness, hey, you gave it a good try. Sorry to hear it didn't work for you. Bobw P.S. what the hell kind of name is Seasonal Bloomer anyway? What blooms out of season? Isn't the name itself redundant? |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Bob P on Jun 6th, 2005, 5:42pm Ya see. Even in a "Vent" thread, here they come! So now, just how does a calcium channel blocker interfere with a 5-HT2A agonist? |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by thomas on Jun 6th, 2005, 5:50pm It's actually seasonal boomer. I think it means he gets hit when the seasons change. But I am probably wrong as he loves to point out anyway. |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Margi on Jun 6th, 2005, 6:02pm on 06/06/05 at 17:40:24, Pinkfloyd wrote:
Once again, thanks for illustrating my point about how you dissect and augment my posts. I've taken lots of advice here - from clusterbusters and others. Otherwise, my husband would be dead. That's it. That's all. I will ask you one last time, Bob - please stop putting words in my mouth and assuming the black/white opinion that you obviously do of me. (I refer to your "if you don't ever want any advice, just say so" sentence.) FOR THE LAST TIME: Yes, maybe shrooms did work for awhile for Mike. I've never denied that. I know that when he was using them, he did get a longer remission than in past years. But that remission ended. And it ended violently. In our opinion - because of the shrooms. Cluster activity drastically increased and Mike ultimately sought out prescription drugs, a month after last dose - something he had NEVER had to do in the past. He had been med free nearly 20 years before he tried the shrooms, so obviously "detoxing" wasn't an issue. We worked very closely with Pinksharkmark and Flash during his last dosings and followed their instructions religiously. In our opinion, Mike - for whatever reason - built an immunity to the shrooms and they caused a definite change in the length of his cycle and voracity of his attacks. Please note the repeated use of the words: "in our opinion" - we are entitled to that. We are also entitled not to exercise the option of trying this treatment again because of the disastrous results Mike experienced. Go ahead and respond, Bob - I'm giving you the opportunity to get in the last word here. I've had mine. |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by thomas on Jun 6th, 2005, 6:12pm on 06/06/05 at 17:42:35, Bob P wrote:
It exponentially increases the heat of the meat, whilst inversely dercreasing the angle of the dangle. |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by burnt-toast on Jun 6th, 2005, 9:46pm Pinkfloyd Didn't take your response as argumentive and in fact agree with the points you made. I should have worded my post better because the lack of good/specific treatments and specific research (lack of interest maybe?) from the medical community disgusts me. Thats what I was attempting to get across. I fully believe that relief through meds, alternatives, surgeries, etc. really shouldn't matter because relief is the ultimate goal and with CH its obvious that everyone responds to something different. (at least from current limited selection of chosen poisons) I have yet to find anything that works for me that I am comfortable with but I'm still looking. |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Pinkfloyd on Jun 7th, 2005, 1:09am on 06/06/05 at 17:42:35, Bob P wrote:
I don't know BobP. Maybe the same way a "benign" 5-HT2A antagonist can cause Stevens-Johnson syndrome, gingival enlargement, lymphatoid papulosis (possible early stage of cancerous lymphoma), bradycardia and hypotension. Maybe we'll have a better answer for you when the first paper is published. Maybe reducing the flow of calcium is in some way reducing the effectiveness. Calcium certainly plays more than one role. Maybe it's effecting the one of the other 5-HT subsets in a way that is not yet understood. Psychedelics that have a positive effect on cluster headaches work in many more than just the 5HT2A. Maybe the fact that best results with verapamil are acheived by timing the dosages throughout the day and increasing at night, indicates that in some way, that the hypothalamus (or what it is trying to do in setting the body clock) is effected by verapamil. Maybe...just maybe, verapamil itself doesn't specifically negatively or positively effect the psilocybin treatment. Maybe it's only a secondary effect if any at all. I think you'll find some of the answers (plus more questions to ask) once we get the paper published. I think you'll find it interesting. By secondary, I mean this, and this is only an example and not a theory...assumption etc... Maybe people on verapamil drink less water for some reason thereby changing the electrolytes in the system. Maybe it makes a difference in how high the verapamil dose is or how long someone has been on it. It "appears" that the longer people have been on imitrex, the more difficult it is to see good results. Maybe people that detox from verapamil, also add magnesium (as we suggest) and its the added magnesium that makes the treatment work more effectively. Everyone is different. Everyone reacts differently to different medications. Most people take varying sizes of doses of medications, in differing combinations. Multiply that out and you have a very large number of variables. There are no easy questions or easy answers that apply to everyone, let alone any one particular person. I'm sure you know that and I'm sure it's a point you are trying to make. I'm not disputing that fact. And i do believe that to be a fact. Many of the drugs that we are prescribed for clusters have no proven basis for why they work. Our docs just tell us try this, it may work. We don't know why but people have had success with it. You know that to be true. Why do anti-seizures work for some, anti-depressants for others, antimanics for others? We may sometimes be misinterpruted (IMHO) as presenting theories as facts. What we *try* to do is present what we feel is the best way to get good results, based upon what "numbers" and experiences have been teaching us. Numbers won't always apply to an individual asking questions but we can quote what has been the most effective to date. We try to apply what we have learned. Before advising people on what we feel will give them the best results, we try to get as much information as possible and try to get them to read as much as possible so they can apply what we know, and what they know about themselves. As you have seen, some people don't want to know any more than where to buy the stuff. We can't control that if we want to continue discussing this on a public message board. We could of course do all of this, with the people we have, and not come out of our cave for 30 years when the FDA approves a pill. Clusterbusters thinks we can prevent a lot more pain and suffering by staying public. With that, we are willing to withstand the occasional slap upside the head. All I can tell you is this. Many people have not been able to get over the hump, so to speak, until they've stopped verapamil. Once they stop it, the treatment works better. Now, you can help us find out why that is if you'd like because I think the answer to that question very well may unlock some important doors. I've said all along that the information on what doesn't work is just as, or more important, than what does work. You often learn more from failure than success. If you don't believe that it makes a difference, fine...prove it. Then I don't have to worry about proving it one way or the other and can concentrate on the other thousand variables. I'd be happy if you could prove it doesn't negatively effect the outcomes. We had to start somehwere, and we have. Now we need to continue to refine things and zero in on the whats/whys/hows. Please feel free to jump in any time. Bobw |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by jokrs2 on Jun 7th, 2005, 2:33am Thanks Eric. Joe's turn to chime in. My choice is alternative. NONE OF THE OTHER STUFF WORKED ON ME! [smiley=huh.gif] I was shocked when I saw that Eric was talking about me and my other thread, (that's what I get for being away from the site for a few days). I have done 2 higher doses just out of curiosity...EXCUSE ME... I would NEVER recommend that to anyone else. I am not going to say a thing about how many times a person sticks a needle in their arm to fit some trex in a day, a person get's relief the best way they know how. My last dose on friday was just 5 seeds but it produced a trip level 4 out of 5 and was very pleasant 8). I guess it's like a box of chocolates, each dose is a little different than the last. It's the pain free, shadow free time that is of interest to me. Please feel free to get yours any way you see fit. I used to do Owsley acid when I was a teenager...so please don't worry about me and my little voyages...as they are nothing compared to the Owsley. All God's blessing's, Joe |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by seasonalboomer on Jun 7th, 2005, 8:09am on 06/06/05 at 17:50:51, thomas wrote:
Thomas, I now feel as though you "get me". I have been laid wide open for the cluster community to see. I'll probably never disagree with anything you say from now on as it appears that you've taken it so seriously ;;D And for me to have been so insensitive, to someone who "gets me" so well. What was I thinking? Scott |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by thomas on Jun 7th, 2005, 9:20am on 06/07/05 at 08:09:17, seasonalboomer wrote:
What kind of fun would that be, you've just ruined my day. |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Flash on Jun 7th, 2005, 12:15pm TrollP - yes you took all those treatments consecutively... err like on consecutive days LMAO! *** Margi - The problem I have with you is more complex. And for the first time I'll reveal the full extent of my concerns. Firstly you have stated time and time again that "The shrooms didn't work for Mike". Only when pressed extremely hard do you conceed that this is not the whole story. That's why I am compelled to pop up and recommend people to check out your old posts for the years that Mike was PF. Furthermore you are now classing the PF time as "a longer than usual remission". But in the original posts you in fact claimed that the shrooms had aborted active episodes just after their onset. Hmmm. Your asking DJ to strike all your old posts from the record... that really bothers me. Thank God for quotations! Each aborted an episode should be counted as a success. Now from memory I recall there were (yawn how many times have I typed this over the last 2 years) 4 aborted episodes. Then there was an episode that you failed to abort with the shrooms: Shrooms 4-1 Beast Many clusterbusters have had instances where the treatment has initially failed to abort an episode. In some cases they had had success by swtiching to another strain of shroom, or using LSA and even LSD. In other instances they've juggled with the dosage and frequency of dosing. Even then we have seen some total failures... only for the shrooms to work again next time around. While you go on to say that this was Mike's longest and worst ever episode, you also neglect to mention that conventional prescription meds were quickly thrown into the mix including Imitrex. Imitrex has been strongly implicated in making things worse and longer. And... oops there's more... you neglected to mention that unlike the previous attempt on this occasion Mike delayed taking the shrooms until the episode was well under way. I have done this twice, and here's what happened to me: On both occasions I experienced 5 days of sheer and utter kip10 hell with the episode finally terminating 7 days after dosing. I avoided all other meds bar O2 during that time. I also avoided redosing too soon. Now for the Big Bad Flash part of this post. I am ALWAYS sceptical of events that occur on on-line forums. You know like when Monique died of cancer then came back to life. The thing bothers me here is how the shrooms were working perfectly well for Mike until "THEY DID JACK SHIT" for BobP. Then it all went pants for Mike. This may be a coincidence but it makes me uneasy. It especially makes me uneasy given all of the stuff detailed above. Should you ever wish to avoid my reiteration of these facts then all you have to do is state: "The shrooms worked for Mike on 4 episodes then failed once. We don't know why they failed but he hasn't taken them since because he fears that they may have made that last episode worse." Which is the truth. *** Marc - Yes I have experienced Kip 10s. I aquired CH at age 16 in 1986. I went undiagnosed until 1989. My GP didn't know of any treatments other than paracetomal (which makes CH worse) so that's all I got. There was a 28 month remission from Jan 93 until April 95 due to recreational LSD usage. During this time I was finally diagnosed by neuro after waiting 2 years for an appointment. At that point I finally qualified for ergotamine or methysergide should my remission end. It did but I delined those medications after reading up on the side effects. After all I had suffered a total of 12 months of CH pain by that time including and had gotten used to it. Instead I opted for something safe and ineffective... Propnaolol which almost killed me. Then in September '95 I discovered the shrooms. So I will force myself to tolerate a Kip 10 rather than resort to prescription meds. I will unhappily endure the odd week of 6 x kip 10 headaches a day, each attack lasting 3 hours. See I know that the headaches won't kill me... but I'm not so sure about the drugs. So for me, and others like me, detoxing is not that big a deal. CH has existed since before there were drugs to treat it, and back then people somehow coped. Detoxing is a small price to pay for living a painfree life. And episodics needn't even detox provided they take the treatment early enough. |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Margi on Jun 7th, 2005, 12:54pm ok, I'm deleting this awful post I made. I apologize for letting my temper get the better of me. DJ, thanks for letting us have unbelievable freedom of speech here. No wonder you're bald, man. |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Bob P on Jun 7th, 2005, 1:11pm Quote:
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Margi on Jun 7th, 2005, 1:12pm on 06/07/05 at 12:15:18, Flash wrote:
Are you finished editing yet? I said that repeatedly, Flash, yet you still feel the need to regurgitate. But just to satisfy your little pea brain, here you go. We feel that shrooms extended a remission for Mike to two years, during which time he should have had approximately 4 cycles. Was it the shrooms, or was it just that his pattern was changing? We tend to think it was the shrooms. However, shrooms did ultimately fail him and he hasn't had the courage to try them again and I don't have the heart to ask him to act as a guinea pig again either. He has found that other conventional methods control his cluster pain in a more effective way. That's all you're gonna get, Flash. Fucking deal with it. >:( |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Flash on Jun 7th, 2005, 1:17pm That wasn't so bad now was it? Just for the record: BobW (Pinkfloyd) was the originator of Clusterbusters not me. I joined after it's inception. He's the guy that's done all the hard work! |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Margi on Jun 7th, 2005, 1:21pm wow, good comeback. ::) Regardless, you were the one that brought this treatment to this community initially. So, turn about is fair play, right? I will shut up if YOU will kindly return the favour. "you guys gave it a good try. Sorry to hear it didn't work for you." Come on, Flash - I played your game, now you play mine. |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Margi on Jun 7th, 2005, 1:38pm yep, that's what I figured. no response. Your class is showing, Flash. Too bad it's all "third". ::) |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by jokrs2 on Jun 7th, 2005, 4:27pm Just wanted to send Margi a hug and a smile...Gusfrabah. :) Blessings, Joe |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by SteCo on Jun 7th, 2005, 4:49pm Bobp...I took the liberty and had a look at your HA chart. BTW good records. Ever had any silent hits before? SteCo |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Bob P on Jun 7th, 2005, 5:07pm SteCo, Not that I can recall. That one had the teary eye, runny nose but no pain. Doc Sewell noticed that too. I particularly like the entries (or should I say no entries) for June 6. Sure looking forward to sleeping through the night and taking a nap on the couch on a Sunday afternoon! |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by SteCo on Jun 7th, 2005, 5:28pm Quote:
Noticed tax day, like the rest of us, was an open invitation for the beast. Is week one open for discussion, in regard to the silent hit? Very well could have stumbled onto something with this for you, just by looking at your chart. BTW....I have had the silent hits too. SteCo |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Chillrmn1 on Jun 7th, 2005, 6:30pm Hey BobP, Appreciate that you responded back. What really lifted my relief valve was this: "I think flaunting your pain free status to other clusterheads who are still suffering makes you a total a*s*s*h*o*l*e!" I'm over it now. At the time, just couldn't understand how you or anybody could think this. You see, I've seen nothing but support from all sufferers of this disease for others on this forum, and when people exclaim pain free time it was/is always followed up with how this was achieved so maybe others could be also. So you see, never once have I ever felt somebody was flaunting their success in the face of another's misery. Like I said, I'm over it. SteCo brought up a very interesting phenomena, the phantom attack/pain free attack. In 28 years, I have had only one and that was 5 days after seed dosing. And if anybody's interested, LSA is still working for me after only 1 dose, now at 3 1/2 weeks pain free. Eric, you did a fine job with this thread, and that's sincere. ;-) Peace All, Bob |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Flash on Jun 8th, 2005, 6:08am on 06/07/05 at 13:38:06, Margi wrote:
No I went home because I had a dinner engagement. Margi this is nothing personal I'm just doing a job of work. I have nothing but respect for anyone that tries using hallucinogenics to treat CH. They are powerful drugs and the side effects although usually 'harmless' can be terrifying. All data is good data whether the subject reports positive, neutral, or negative results - those results are important. I fully appreciate that both Mike and BobP have taken hallucinogenic drugs on several occasions. That alone takes guts (or desperation AND guts). It is unfortunate that the desired result has not been achieved for whatever reason (and we really don't know the reason). My issue has only been with, what I perceive to be, the negative and dimissive way that these facts have been presented in the past. Most of the Clustebusters including myself search for an explanation where the treatment fails to produce the desired result. Some people perceive this as making excuses. That is not the intention. Sometimes this also involves asking too much of people in terms of detoxing, staying off meds for what may turn out to be weeks on end, and trying every permutation of the treatment. Few people are prepared to do this. Under those circumstances all I ask is that they provide summary details of their attempt (this can be as simple as linking to the original thread or posts), so that others can make an informed decision before embarking or the treatment themselves. It's only when someone fails to do this that I'll dredge up the details myself. And if that provokes an outraged reaction... then I'll proceed on the offensive. I hope this explains my drivers. Sorry that I upset you. Flash |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Margi on Jun 8th, 2005, 9:52am Thank you, Flash. I, too, apologize for venting on you yesterday. Heat of the moment, buttons pushed, history rehashed ad nauseum - guess I reached my boiling point. I understand your frustration too and I do have huge respect for all the work you and the busters have done in bringing relief to many clusterheads. I'll take back the "third class" shot I took at you. But I ain't gonna kiss you, though. ;) |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Flounder on Jun 8th, 2005, 10:17am aaaaawwwwww Now, don't we all feel better now. :) Come on BobP, group hug and give us a smooch! |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Bob P on Jun 8th, 2005, 10:30am I'd kiss Flash, if it weren't for the acne! (and Hub would get jealous) |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Margi on Jun 8th, 2005, 10:31am well, Bob, you can take things to clear up your acne you know. I don't think he'd really catch anything from you. |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Bob P on Jun 8th, 2005, 10:33am Uh huh. So that's the way it's gonna be today Magoo? |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Margi on Jun 8th, 2005, 10:44am yep, turnin my guns on you today, Boob. Haven't taken a shot at you for a really long time! How are those man boobs coming along? |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Bob P on Jun 8th, 2005, 10:46am My acne consists of the occasional butt zit from too many hours in the saddle of my hawg. Quote:
Jealous? |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Margi on Jun 8th, 2005, 10:49am on 06/08/05 at 10:46:45, Bob P wrote:
yeah, lil bit. But I would never infringe on Hub's territory though. He scares me. |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Chillrmn1 on Jun 10th, 2005, 12:57pm Dangnamit BobP! Now I know yer a smart ole rat and biggin too with man boobs, butt zits from ridin hawgs and somethin about a guy named Hub...all this ccordin to fine folks like Jonny and Margi and hell even yerself....had to question yer motive on the "flauntin pain free time"....ya know which one...think I understan....don't agree with ya....but think I understan.....but don't understan why ya keep insistin on mixing yer remedies with those alternatives...son, it just don't seem to work well that way.....the fine folks o'er at my hollow...yea I reside at the bottom of the hill near the south side of the ridge..... well anyhoot, they suggest me to stop takin my remedies fer a spell and then try the alternates.... also sum good readin material o'er at clusterbusters.com....well any hoot... bein the stubbern catankerous ole ass I am.....reckon I ought to listen, been a hurtin too long and too bad......tried it their way and it worked....worked like majik I tell ya!! BobP, hope ya had a laf and please don't ridicule me on my speak.........I was born in West By God You Know Where.....but do hav some advice fer ya.........if ya see some mean big bastards in white carryin big ole nets with em........run like hell, they mean serious bizznezz! ;-) Bob |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Bob P on Jun 10th, 2005, 1:15pm Just exploring. The busters use the "one thing at a time" approach. I'm trying out the shotgun approach. Take everything you can get your hands on to stop the pain. Then eliminate them one by one until the pain returns. There's your magic bullet. I'm still getting hit but I'm gonna start tapering down the verap as of today and see if I can abort all attacks with O2 (no cafergot). I'm on the tail end of this cycle now and, if they stay true to schedule, I should be in remission for close to 4 years once they do stop. Hub is a guy who has zits you'd mistake for boobs! |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Chillrmn1 on Jun 10th, 2005, 1:33pm Hey BobP, Seriously, hope you get pain free and your cycle ends soon. Bob |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by SteCo on Jun 10th, 2005, 2:12pm LMAO Chillrmn1!!!!!!!...... ya prolly got some good vittles in dem parts. we kepe hidin' the hooch from granie, but shi is real gud at hidnseake, so the pigparts kep gittin burnd at fedin time.... Bobp...4 year remission..pretty darned sweet....the silent hits, have disussed them a little with the good doc too. AND this is all IMHO, these are a GREAT sign with mushrooms. My past cycles have shown that when they show up, the end is very near and I stop everything, so as to not upset anything good going on in there..and things "get in balance" for a lack of better words... and the cycle is soon gone....again my personal theory and experiences. With that said.. with this years cycle I did not have them (and yes I got worried), but instead they left under shadowing and finally terminated. So in other words, not necessary to have them to show the mushrooms are doing something good. Maybe this would apply to your silent hit, maybe not...... could be a good indicator maybe. HTH SteCo |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by Margi on Jun 10th, 2005, 3:04pm on 06/10/05 at 14:12:42, SteCo wrote:
interesting, SteCo. Here's another angle on the silent hits. Mike had a 2+ year remission, we think due to shrooms. Then he had the longest cycle of his life - 6 months. When that cycle finally ended, he started into a pattern of daily silent hits that continued until his next cycle, through the next remission and he's in cycle again now - again, approaching the 6 month mark. But the silent hits stop while he's in cycle, then reappear during remission. It's like he's become "silent chronic" (if there is such a thing). Always at the same time every day, too - 4:30 - 5:15 p.m. His cluster eye pupil constricts and the other one doesn't. He feels no pain but does get slightly congested. Always, after 45 minutes, the constriction is gone and he's back to normal. Hopefully, he should be ending this cycle soon too. No silent hits yet though. It will be interesting to see if they come back during this next remission or not. I tend to think that the shroom dosing really hasn't had an influence over the appearance of silent hits for him, since he hasn't dosed in a long while now. His remission/cycle pattern has definitely changed too (longer remissions, but longer cycles) - maybe that's just the natural evolution of cluster? I dunno. Strange science. |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by vig on Jun 10th, 2005, 3:31pm on 06/10/05 at 13:15:01, Bob P wrote:
I feel for you Bob, but that's dangerous and absurd. :-/ |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by SteCo on Jun 10th, 2005, 5:05pm Hi Margi, Quote:
Dang.....that is odd. Thank goodness they stay silent. The silent chronic notion sounds very logical to me. Quote:
SteCo |
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Title: Re: VENT: What's your Poison: Meds or Alternative? Post by jokrs2 on Jun 10th, 2005, 5:24pm Hey SteCo. I have to do the maintenance dosing right now as the beast is marching around the castle and I know he's there. A small glass of juice with LSA in it 1x per week or 1x every 2 weeks is much better than swallowing a handful of something else with rebound written all over it every day. Just what's working for me ;;D. Getting ready to take a sip now because I've had tension migraine from overlifting :-X (weight training on my Bowflex) for a few days now, and it feels like the beast is nearer than normal. I know I'll be doing great tonight. Blessing's Joe |
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