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   Author  Topic: Question about "alternitive" therapy  (Read 10791 times)
Margi
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Re: Question about "alternitive" therapy
« Reply #75 on: Dec 10th, 2004, 5:10pm »
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I don't understand your post, Kevin.  My brain has apparently already left for the weekend...
 
could you re-word that please?  sorry.
 
edited to add:  ok, thanks Kevin - I get it now.  Duh.  Is it Miller time yet?  Sheesh!  I need a weekend.   Roll Eyes
« Last Edit: Dec 10th, 2004, 5:17pm by Margi » IP Logged

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Re: Question about "alternitive" therapy
« Reply #76 on: Dec 10th, 2004, 6:21pm »
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on Dec 10th, 2004, 3:45pm, Margi wrote:
We, at OUCH Canada, were the first OUCH to publically discuss the treatment.  I am the webmaster for OUCH Canada, Ueli.  I hold the power to the delete key there.  Never once has any talk of shrooms or busters been deleted.  We, at OUCH Canada, believe in bringing every available treatment option to the table for discussion for clusterheads.  I think that's a pretty fair and non-biased attitude, don't you?
Yes, I do. That's why I wrote:  
on Dec 10th, 2004, 3:24pm, Ueli wrote:
... this, and the Canadian, web site have also helped many clusterheads to learn about psilocybin ...

Margi, is my English that bad that this lengthy justification of OUCH Canada was needed? I thought I made it clear enough which I consider the good guys and which the bad ones.
 
Margi, I'm with you having a disturbed attitude about people that claim anything as a cure for CH, they are simply snake oil peddlers. But I can't remember anyone ever claimed shrooms as a cure, ending CH once and for ever. In the contrary, from the very first posts of Flash ( 1998-06-28 ) an attentive reader could learn that a (about) yearly maintenance dose was needed.  
As for the screewing up: That not only happens with shrooms. How often did we see a ridiculous low dose of Verapamil? How many had only success with oxygen on the second, proper attempt (Ask your witness Jonny how I had to kick his ass to try oxygen the right way, now it's his second love)?
Margi, I know you know all this, but I wrote it for benefit of less informed. Smiley
 
Jmin wrote a list good reasons to try shrooms. He didn't claim it a cure, he didn't question the reasons of those who won't try it, he didn't claim a 100% success rate, nor did he clobber those not willing to learn from the experience of others and make a second attempt. And yet, Margi chose to tear his posts to shreds. What conclusion was nearer than Margi changing over to the Bob P side, because of the failure of Mike's second attempt?
 
PFNADs, Ueli                 smokin
 
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Re: Question about "alternitive" therapy
« Reply #77 on: Dec 10th, 2004, 6:37pm »
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Ueli Smiley  you and I are indeed arguing some of the same points, indeed.  So let's stop.
 
I didn't mean to tear Jmin's post to shreds, as you say, I more meant to challenge some of his points.
 
My biggest pet peeve is the general attitude that those who won't try ENJOY the pain of cluster.  THAT really rubs me the wrong way.
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Re: Question about "alternitive" therapy
« Reply #78 on: Dec 10th, 2004, 6:54pm »
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I may have seemed to be picky with word choice on this thread, but there are certain "words" which seem to reinforce the establishing of polarity on the subject as opposed to realizing the common ground that has been acknowledged.  Agreeable comportment is, at this time, apparently a factor.  
 
 
 
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Re: Question about "alternitive" therapy
« Reply #79 on: Dec 10th, 2004, 7:06pm »
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Quote:
What conclusion was nearer than Margi changing over to the Bob P side, because of the failure of Mike's second attempt?
Since Margi and BobP both endorse and encourage the trying of the alternative treatment, what side is it you are speaking of Ueli?
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Re: Question about "alternitive" therapy
« Reply #80 on: Dec 10th, 2004, 10:04pm »
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on Jul 1st, 2004, 8:24pm, Margi wrote:

 
what about detoxing and then coming home for a couple of days, every couple of months?  Cat, you're chronic.  You've already proven to yourself that shrooms put you in remission.  Chronics need to dose more regularily than episodics.  I'm betting that in late June of 2003, had you dosed again, you might not be doing the med ballet that you're doing now.  Do they drug test wives at Clark's base?  Usually, if they do drug testing, they don't test for psilo unless there is suspicion of use.

 
Home is referred to as the country of Canada because of the implications of trying shrooms here.  
 
Just thought I would put this up here, it's from OUCH Canada board.  Margi is FAR from anti alternative as is witnessed above.
 
Everyone has their reasons for choosing or not choosing a med.  In my case, I refused pred treatment this last round of med tampering because of the horrible side effects I had with it last time.  I also chose not to undergo the surgeries being suggested.  That doesn't mean I like the pain.  
 
I understand that the busters are frustrated when someone won't even inform themselves about the shrooms though.  When someone closes a door on a treatment option without even hearing or learning about the treatment, that I don't understand.  If once you've learned about it and you determine it simply isn't suitable to your life, then that's a different scenario, and that should be fine too.  
 
I personally think that with the Harvard studies going forward, that everyone should learn as much as they can about this treatment the same as they would any other treatment.  PinkFloyd will be the first to tell you that he has told some people that this treatment simply is not for them.  It isn't for everyone.  There are pro's and con's to consider same as for any other treatment out there.  
 
My 2 cents
 
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Re: Question about "alternitive" therapy
« Reply #81 on: Dec 11th, 2004, 6:23am »
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Interesting page 4.  
     Mostly unhelpful but if one can read between the lines there is some very useful information.
     In a previous post I described CH as becoming dominant and important in peoples lives. This was not  in anyway meant to mean that people enjoy it, only that the effects of Ch can be overpowering, forcing people to worry primarily about getting through the day as pain free as possible at any cost. I may have offended some people and for that I apologize.
     A routine is a routine and if the consequences of breaking that routine mean excruciating and debilitating pain then the routine can be impossible to break.  
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Re: Question about "alternitive" therapy
« Reply #82 on: Dec 11th, 2004, 8:48am »
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I never thought I'd see the day where there were very pro shroom people arguing with merely pro shroom people LMAO this is a big change from 1998 when there were people threatening to send the police to my door.
 
Margi the issues that I have with your points are as follows:
 
1.  "The treament is the most affordable treatment that has ever been effective for clusters."  
We pay $20 a month for oxygen when Mike is in cycle.  Out of cycle, we keep the tank for free (only pay to refill it) - and this is entirely reimbursable by our medical insurance.  Granted, we didn't grow the last time Mike tried the treatment, but it cost us $50 on the "black market".
 
 
Once someone has the basic equipment they can in theory produce a never ending supply by making their own spore syringes.  Then the only cost is the rice.  Anyway this whole point is pedantic.  
 
2.  The treatment, unlike others, does not become inaffective over time.  
Beg to differ here.  We THINK it kept Mike in remission (or at least changed the length of his remission) but when the cycle did finally come back, the treatment made everything worse.  He was - I REPEAT - completely med free at time of dosings.  We think he did build an immunity to it.  Our opinion only.
 
 
I've been through this particular instance with you before.  For starters he skipped his maintenance dose.  Secondly he dosed at peak cycle, thirdly one or two doses is not almost never enough to function under those circumstances.  Fourthly there was no attempt made to try an alterative size or frequency of dose.  Under those circumstance sipping often sorts things out.  Fifthly conventional meds were used, and has been demonstarted many times these have a tendancy to prolong episodes.
 
All in this hardly consitutes the treatment stopping working, more just a sesation of it working miracles.
 
3.  The treatment has provided a PF existance to MANY long term chronics who have tried the entire spectrum of other known treatments.  
I know of three chronics who either worsened or felt no effect after treatment.  One of them became chronic after dosing and she had been episodic prior to this.
 
 
I know of two.  In one instance the person bought street shrooms and judging by the effects and description of their appearance they were not psilocybe mushrooms but possibly panther cap amanitas.  So we'll chalk that one up as a failure I guess???  
 
There was a gentleman about a year ago that was really suffering and the treatment didn't seem to do much, although he made a good attempt.  This was at the same time as D and Lee (I think).  This person was doing the larger doses a few days apart.
 
Right now there is a lady on the CB forum that is really struggling, but she's putting up the m*th*rf**k*r of all fights.  Hats off to her.  Right now it's looking pretty grim, but she's nowhere near ready to throw in the towel just yet.  With an attitude like that there is every chance that ultimately she crack this thing, and learn an awful lot in the process.
 
Please provide full details of the other one as we can possibly learn something here.  
 
Personally that people try sipping as their first attempt and only go for the bigger less frequent whacks should that fail.  Better still a small dose between episodes where the subject is episodic.
 
So apart from your third point I'd say you were on shaky ground.  If you look back through my 250 odd posts (VIRTUALLY ALL OF THEM ON SHROOMS) you'll see that I've had my ups and downs as have most of the clusterbusters group, but perseverence pays off in spectacular fashion.  This treatment is not always easy, there are huge problems with it, that's why it needs it's own support group!  
 
As pinky mentioned earlier in this thread the shroom treatment does seem to attract some of the worst and most hopeless cases of CH.  It also attracts a lot of half assed attempt where people decline to detox first.  Even after almost 12 years we still don't know the optimum dose and frequency of dose.  Were this treatment to have several million dollars lavished on it then I have no doubt that most of these so called 'failures' simply wouldn't occur.
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Re: Question about "alternitive" therapy
« Reply #83 on: Dec 11th, 2004, 1:48pm »
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You know what, Flash?  I give up.  I am sick to death of rehashing this with you about Mike's last treatment.  You weren't here.  I was.  I know how things went.  I was the one to watch him suffer in agony as the shrooms made things worse for him.  You weren't.
 
But...you're right.  We must have fucked it up.  Yep, you win Craig.
 
Happy?
 
Should I tell all those people I've been encouraging to try this treatment that they'd best have you there by their sides before they try?  
 
I'm done with this shit.
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Re: Question about "alternitive" therapy
« Reply #84 on: Dec 12th, 2004, 9:18am »
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on Dec 11th, 2004, 1:48pm, Margi wrote:
I was the one to watch him suffer in agony as the shrooms made things worse for him.  You weren't.

 
Yeah like I don't know cluster headache feels like?  Doh!
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Re: Question about "alternitive" therapy
« Reply #85 on: Dec 12th, 2004, 10:23am »
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It really frustrating to see this discussion turn into a pissing contest. For what?  
It is the first constructive thread I have seen that deals with this. I'm sure I'm not the only one that has been helped.  
What a fuckin shame it.
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Re: Question about "alternitive" therapy
« Reply #86 on: Dec 12th, 2004, 10:33am »
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No you are not the only one frustrated with that Karma, but I see both sides to the arguement.  
 
All I know for sure is that it doesn't do any good for anybody to bite at anyone's heals over this.  
 
For anyone weighing the issues in regard to trying this avenue, all the fighting doesn't help matters.  No one screams foul if someone says that 02 didn't help them even if they did it right.  So please stop the bickering over this.  
 
It doesn't make the decision any easier for those of us struggling with all the issues.
 
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Re: Question about "alternitive" therapy
« Reply #87 on: Dec 12th, 2004, 10:52am »
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on Dec 12th, 2004, 10:23am, karma wrote:
It really frustrating to see this discussion turn into a pissing contest. For what?  
It is the first constructive thread I have seen that deals with this. I'm sure I'm not the only one that has been helped.  
What a fuckin shame it.

on Dec 12th, 2004, 10:33am, Redd715 wrote:

It doesn't make the decision any easier for those of us struggling with all the issues.
 
Pegg

 
There is so much good that goes on throughout these boards....for the most part true support, yet this "issue" becomes such a spark for debate.
I don't get that either.
 
It's a real bitch!!!!
 
I think you guys nailed it !!!!!
Hard decisions to make with all the shit we put into our systems regardless of chemical or natural.
 
The only guidance many of us have is from here because our doctors seem to be clueless despite all their years of helping Clusterheads......
 
Who knows....
 
Do what works for you but don't knock what works for others.
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Re: Question about "alternitive" therapy
« Reply #88 on: Dec 12th, 2004, 11:04am »
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Quote:
Do what works for you but don't knock what works for others.

 
Spoken like a true diplomat.
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Re: Question about "alternitive" therapy
« Reply #89 on: Dec 12th, 2004, 12:33pm »
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Sorry I have not acquitted myself particularily well especially with my last couple of posts.
 
It's frustrating for me that BobP and Margi continually dredge up the same cases over and over without providing any contextual or qualifying details AND do so in the guise of supporting this treatment.  Personally I feel I've got the choice between letting that go unchecked or debunking it.  Someone that's never encountered this topic before either gets fed incomplete information or encounters a flame war.
 
Now I would quite happily have each of these disputed instances of failure dragged right out in the open for a proper debate, as opposed to statements like "I was the one to watch him suffer in agony as the shrooms made things worse for him." which only serve one purpose.  So yes by all means drag Mike's failed attempt into a thread such as this, but at least have the decency to present it in such a way that people can reach their own verdict.  In other words provide ALL the details... and perhaps also list the times it did work and provide details of those too.
 
Nobody is disputing that there have been failed attempts.  The clusterbusters are NOT claiming that this will work for everyone - we're just pointing out that it's too early to tell.
 
Perhaps we should just start a thread where we fully, openly, and fairly debate any disputed instances of success or failure, then we can simply cut & paste a link to that thread.  Turning on each other doesn't solve anything.  Putting negative spin on the treatment for whatever reason is only going to damage it.  
 
Why is it so wrong to assume that if the treatment didn't work then perhaps there's a way round that next time?  Why is it so wrong to want to exhaust every possible avenue?  If there are instances of the treatment backfiring then we do need to examine those in detail.  I raised the possibility that such a thing might occur 3-4 years ago BTW.  But so far in each of these instances there are several other factors at work, such as conventional meds... and we know for a fact that those can make CH much worse.  So unless we take those out of the equation it's unfair to state that shrooms are to blame, it's probably not even fair to speculate with so little data.
 
There is also the Internet to take into account, and with all due respect there are some very strange people get their jollys on the Internet.  I still remember how someone died and came back to life and that's not an isolated incident.  So for that reason I'm always sceptical of even the smallest coincidence.
  
« Last Edit: Dec 12th, 2004, 12:35pm by Flash » IP Logged
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Re: Question about "alternitive" therapy
« Reply #90 on: Dec 12th, 2004, 3:12pm »
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Well, I'm still here and watching this discussion with great interest. The conclusion I have come to in my case is, I would be a fool not to give this treatment a chance.
I am med. free---out of cycle---don't have insurance and if I did I would not go back to the triptons, beta blockers, or topamax. The postman rang twice----so the progress has begun.  Now I wait and see. See what the New Year brings. Nothing can be as bad as the 6-7 months of this year's episode.  Wishing you all a half way decent holliday season and a tolerable new year.
      Sophie   Smiley
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Re: Question about "alternitive" therapy
« Reply #91 on: Dec 12th, 2004, 4:30pm »
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on Dec 12th, 2004, 3:12pm, Sophie wrote:
I would be a fool not to give this treatment a chance.

 
Absolutely, Sophie - I hope you do and that you find good success with it.  
 
I hope no one lets the character assassinations cloud the issue here over a treatment that has brought success to a lot of clusterheads.  
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Re: Question about "alternitive" therapy
« Reply #92 on: Dec 12th, 2004, 9:40pm »
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on Dec 12th, 2004, 12:33pm, Flash wrote:
BobP and Margi...
 
...in the guise of supporting this treatment.

 
 
I guess opinions will continue to differ, do to statements as above
Quote:
without providing any contextual or qualifying details

 
there appears to be an "alternative" interpretation, of less narrow perception.
 
 
 
Kevin M  
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Re: Question about "alternitive" therapy
« Reply #93 on: Dec 12th, 2004, 11:02pm »
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WOW, there definately are some passionate opinions on this subject.  I am not a sufferer I am a supporter, so maybe, well most definately, I see things from a different view.  I noticed a few things while reading this thread.  First, the two people who seemed to speak the strongest in this thread, for the treatment working med free,  Flash and Jmin, if I understood correctly, both had not used any type of meds themselves prior to trying the treatment, or atleast not for quite a long time.  Is it possible that, that contributed to them seeing better, quicker results from the treatment, and since they weren't on any meds they didn't have the fear of giving them up so they can't understand that, they can only speak to the great results that they got that came from being med free, hence thier passion and point of view.    
     I also have to wonder... If the people who speak out so passionately in favor of the alternative treatment aren't really trying to help others find the same freedom that they have found, then what is thier motive?  As I mentioned, I am only a supporter, and I am a supporter of someone who has found and successfully used the treatment, and I have to tell you, after seeing his expected cycle come and go, with no real clusters to speak of, and after not having to watch him go through that, I started preaching the good word to others at cluster gatherings.  I found myself having to back off because I was so passionate about it.  
 I can't speak to what is best for anyone else but I sure know that NOONE should have to go thru what u guys do.  And I know that with this treatment, some now don't have to.  Doesn't that alone make it worth a good solid, med free try.  Best of luck to you all, whatever u decide.
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Re: Question about "alternitive" therapy
« Reply #94 on: Dec 13th, 2004, 8:41am »
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Quote:
Right now there is a lady on the CB forum that is really struggling, but she's putting up the m*th*rf**k*r of all fights.  Hats off to her.  Right now it's looking pretty grim, but she's nowhere near ready to throw in the towel just yet.  With an attitude like that there is every chance that ultimately she crack this thing, and learn an awful lot in the process.

 
I've not had a ch since 12/8.  That day I had 4 clusters with one going to a kip 8.  That was the last time I dosed as well.
 
Has this been easy?  No
 
Were there worse times prior to good times?  Yes
 
Was I ever ready to quit?  No
 
Am I having shadows or any sign of the beast still alive?  NO, and I have a sinus infection right now.
 
Did I have failures by having to use pain meds?  Yes, but only temporarily as I never gave up.  I did what I had to do to retain my sanity and then got back up and started fighting again.
 
Do I regret anything.  HELL NO!
 
I may not be finished with the fight, who knows, but I continued to fight and will continue to fight as I have been chronic for 8 years and suffering since 1981.  It has been a MF fight but the KO is coming soon if it has not already occurred.
 
A cold front came thru here last night.  Normally the biggest trigger for me.  Did I feel any sign of the beast?  NO
 
I now find myself wondering what to do.  Where to go.  My life is suddenly changing.  I was able to plan to attend a birthday party this weekend without fear of being hit.  The party was GREAT!
 
5 days pf with no meds.....I should have tried this treatment years ago.
 
I hope all are able to have some pf times as it is quite awakening to a chronic to wake up and not have my life controlled by the beast.
 
Happy Holidays,
Renee
 
 
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Re: Question about "alternitive" therapy
« Reply #95 on: Dec 13th, 2004, 9:30am »
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SWEET!
I hope you can modify your tag line soon.
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Re: Question about "alternitive" therapy
« Reply #96 on: Dec 13th, 2004, 9:42am »
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I didn't say any specific person or thread.
I repeated the use of 'steamrolling'.
I am not in a 'pissing' match, nor any other kind of match.  
Maybe what it boils down to is people wanting their egos stroked.
*pl&e*
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Re: Question about "alternitive" therapy
« Reply #97 on: Dec 13th, 2004, 9:44am »
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BTW
 
*YAY* and *happy dance* Renee!!!!  May you count the p/f days for eternity.
*pl&e*
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Re: Question about "alternitive" therapy
« Reply #98 on: Dec 13th, 2004, 10:15am »
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and I'm thrilled for Renee!
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Re: Question about "alternitive" therapy
« Reply #99 on: Dec 13th, 2004, 10:34am »
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Great it looks like the treatment has finally gained a foot hold.  From previous experience with other chronics, it's extremely likely that the hard part is over.  You may get hit again but will probably be able to control it with small maintenance doses, and slowly stretch the time between doses farther apart.  IMO keep the maintenance doses small BTW - this is where it becomes a delicate balancing act.  There's also the possibility that you won't get hit for quite a while, there's no way of knowing.  
 
It is very unlikely that things will take a significant turn for the worse, provided you keep on top of it.  The best strategy is to wait and see how long till the next serious twinge comes, if it takes 10 days then thereafter dose every 9 days for a while with 1/2g, then after a month or so try and stretch it out a little longer.  This is not an exact science, it's like trying to stay within the eye of a moving hurricane.
 
It can be pretty scary when you get slammed hard after those inital doses can't it?  It's easy to see why some people reach for the trex at that point.  I'm beginning to suspect that is also the WORST possible time to hit the trex.  Make sure you remain well stocked up on the medicine, as the worst thing that can happen at this crucial point is to run out.
 
To answer someone else's question:  Yes the treatment works extremely well for me.  I have been using it for coming on 12 years and would have experienced in the region of 24 x 1 months episodes during that time, a total of 2 solid years of pain.  Instead I've escaped with 4 episodes totalling only 2 months of pain.  Each of those instances are attribute to either lack of shrooms, or my own experimentation with when and how to dose.  
 
on Dec 13th, 2004, 8:41am, Renee wrote:

 
I've not had a ch since 12/8.  That day I had 4 clusters with one going to a kip 8.  That was the last time I dosed as well.
 
Has this been easy?  No
 
Were there worse times prior to good times?  Yes
 
Was I ever ready to quit?  No
 
Am I having shadows or any sign of the beast still alive?  NO, and I have a sinus infection right now.
 
Did I have failures by having to use pain meds?  Yes, but only temporarily as I never gave up.  I did what I had to do to retain my sanity and then got back up and started fighting again.
 
Do I regret anything.  HELL NO!
 
I may not be finished with the fight, who knows, but I continued to fight and will continue to fight as I have been chronic for 8 years and suffering since 1981.  It has been a MF fight but the KO is coming soon if it has not already occurred.
 
A cold front came thru here last night.  Normally the biggest trigger for me.  Did I feel any sign of the beast?  NO
 
I now find myself wondering what to do.  Where to go.  My life is suddenly changing.  I was able to plan to attend a birthday party this weekend without fear of being hit.  The party was GREAT!
 
5 days pf with no meds.....I should have tried this treatment years ago.
 
I hope all are able to have some pf times as it is quite awakening to a chronic to wake up and not have my life controlled by the beast.
 
Happy Holidays,
Renee
 
 
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