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Sophie
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Question about "alternitive" therapy
« on: Dec 3rd, 2004, 2:32am »
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If the psilocybin treatment is as successful as it sounds, why aren't more of us trying it? I visit here alot and read the posts----I'm PF at the moment---but won't be forever. I had a hellish last two years with the R/Xs and Dr.s. It just seems to me it would be logical to try another way, but as I read the posts it doesn't seem to me that many others feel that way. Is there a reason, other than the legality? What is is sucess rate? Are there drawbacks? Is it worse than spending thousands and not tolerate the meds.? Just wondering and would be grateful to hear some opinions. Thanks--Sophie Huh
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Re: Question about "alternitive" therapy
« Reply #1 on: Dec 3rd, 2004, 7:47am »
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Sophie,
     I sincerely hope that your questions can get answered.  
My own take on this is  
Primarily people trust doctors and medications. People are raised to belive that doctors are gods and right or wrong they are always right.
Secondly this treatment will not be brought up by a doctor because it is not FDA approved and illegal.
Thirdly the treatment itself has allot of stigma attached to it. It is thought that you need to get ready for a potentially uncomfortable psychodelic ride. It is becoming more apparent that much smaller doses will do the trick.
Fourth people that have had success will not publicize it much because it is illegal
Fifth because it is illegal, people just don't know about it unless they find sites like this.
Sixth some people just cannot take the risk because of their jobs or are afraid.
     I've tried nothing and suffered. I've tried the meds and suffered worse. I've not tried the fungi yet but my cycles are usually a couple years apart and this year is the first I heard of this. You can bet I will give it a try next time around.
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Re: Question about "alternitive" therapy
« Reply #2 on: Dec 3rd, 2004, 8:35am »
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Somewhere in the region of 200 of us have tried this treatment.  Those that  have are usually transferred to ClusterBusters internal message board.  The people that are left behind here are mainly the ones that are not using this treatment.
 
The success rate is extremely high.  It's certainly better than the success rate for any conventional meds.  I wouldn't like to put a percentage on it.  We are running a survey and I posted the current batch of results on this message board - cannot remember off the top of my head what they were.
 
There are no known side effects, especially if you undertake the sip method which closely mirrors the dosing patterns of conventional meds.
 
Hallucinogens do not form part of the standard drugs tests, and are undetectable within 36 hours.  In fact the small doses used by the sip method may be undetectable altogether.
 
 
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Re: Question about "alternitive" therapy
« Reply #3 on: Dec 3rd, 2004, 9:10am »
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I think Flash and Karma have a pretty good explanations.  I would just add to Karma's third point about stigma.  Psilocybin is classified as Schedule I  
Quote:
(a) The drug or other substance has a high potential for abuse.
(b) The drug or other substances has no currently accepted medical use in treatment in the United States.  
(c) There is a lack of accepted safety for use of the drug or other substance under medical supervision.

Since the government (I mean primarily the US, but it may apply to many others) has started a war on drugs, there has been a "brainwashing" that certain drugs are "evil."  Reefer Madness comes to mind.  Most of us were brought up hearing that these drugs are horrible, life-ruining, sanity destroying, anti-American substances and should not be used. NO EXCEPTIONS aka zero tolerance.  The government spends billions of dollars sending and enforcing that message.  
 
It's hard to get past a lifetime of hearing this,  but a few painfree months will do the trick.  
 
 
Jesse
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Re: Question about "alternitive" therapy
« Reply #4 on: Dec 3rd, 2004, 9:32am »
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There's actually a study going on at Harvard right now that may help remove the stigma about this treatment. For me it's a matter of having young kids in the house. I do not like the idea of going out and buying something on the street that I'm not sure about. The alternative would be to grow my own. I can't imagine how I would explain the cooler in the closet to my 11 or 9 year old without sounding like a hypocrite.
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Re: Question about "alternitive" therapy
« Reply #5 on: Dec 3rd, 2004, 10:10am »
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I think Nani has put forth the major reasons.
 
Most of us haven't been in the street drug scene for many years and wouldn't even know how or where to start looking for shrooms on the street.  Also the uncertainty of what you are getting if you do find them.
 
Find them in the wild and pick your own - most are inexperienced and afraid of poisoning ourselfs.
 
Grow your own but the kids in the house factor limits that.
 
The true success rate won't be know until a real double-blind study is done.  Flash says 200 have tried it with something like an 85-90% success rate.  What he is really saying is about 200 have filled out the questionaire and most of those were successful users.  How many tried it and it didn't work so they just blew it off and moved on to other things, not bothering to fill out surveys?  Don't know and won't know until the study is completed.
 
All that can be said right now is that it looks promising, and if one is of the mind to, it's worth a try.
 
Bob P (tried it, didn't work)
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Re: Question about "alternitive" therapy
« Reply #6 on: Dec 3rd, 2004, 10:46am »
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I understand the reasoning of being afraid to try and explain it to your kids but I don't agree. I also have children.
My boys would much rather see me try something that eliminates the horrors of a ch than go through 3-5 weeks of agony. I have no problem explaining to them what the deal is.  
Thinking you need to find a local dealer for the fungi is crazy. Grow your own.
If your Pinning hopes on FDA approval then you may as well forget about it for at least 10 years. Just look at the recent congessional debate on medical ganja.  Having said that we all need to support any study that deals with this in a controlled environment. You can't run before you learn to crawl.
 
One more drawback to trying this method, particularly for chronics, is that your body needs to be free of triptans and some prevents. This can be real hard for some to accomplish.
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Re: Question about "alternitive" therapy
« Reply #7 on: Dec 3rd, 2004, 10:49am »
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on Dec 3rd, 2004, 9:32am, nani wrote:
There's actually a study going on at Harvard right now that may help remove the stigma about this treatment. For me it's a matter of having young kids in the house. I do not like the idea of going out and buying something on the street that I'm not sure about. The alternative would be to grow my own. I can't imagine how I would explain the cooler in the closet to my 11 or 9 year old without sounding like a hypocrite.

 I would tell them that it's simply medicine and they must have seen what you go through. It can be used or abused like any other med from a MD or not.  I told my kid long ago and she understands it all and hopes I can find mushies instead of say prednisone.(that really spins me out)  So I don't see how you are being a hypocrit at all as u aren't runnung aroud the house tripping mad but taking a natural med in a responsible doseage. Use and abuse, very different.  But what you tell your kids is very individual of course.
 
 peace  love
 Andrew
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Re: Question about "alternitive" therapy
« Reply #8 on: Dec 3rd, 2004, 9:27pm »
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Hi Sophie,
 
I think everyone above has explained it well.  
 
Personally, I'm hoping that by the time my next cycle comes around (usually 3-4 years apart), that the U.S. studies will have shown some definite results.
 
Even if they don't, I've done my research at clusterbusters.com and by asking a few choice friends here.  I'm prepared to become a farmer if I must.
 
I "stick around" because I hope that in some small way, I can help other sufferers through this horror we all share.  At this point, I only know what meds and treatments have helped me in the past.  But, maybe those same things will help someone new to this horrible syndrome.
 
Hugs and Wishes for PFDAN!
 
Kris
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Re: Question about "alternitive" therapy
« Reply #9 on: Dec 3rd, 2004, 11:41pm »
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Thank you all for your responce to my question. I did not consider the "drug" test---I'd really hate to loose my $7.hr job--with no benifits in exchange for freedom from pain. However: it's interesting to know that this is undectable.
As far as the war on drugs--it's working great here in small town Nebraska----meth bust every nite on the news. I do not have an open mind towards chemical--manmade drugs whether they are made in a real lab or a bathtub. As far as sanity distroying, I think Topamax should be on top of the list.
Sounds like the pro's outweight the cons in my case. I don't have any dependents except a cat and she is stoned on catnip and won't ask questions. (she abuses)
I don't have a problem with that because it's a natural
plant.
I really don't have 10 years to wait for the FDA to give approval----I saw the post about Harvard---and thought I'd like to be in that study---but first things first---have to learn to be a farmer ---then Harvard.  
Who would have guessed that CH would lead to this!
I really do appreciate your information and I am so grateful to have someone to ask. My friends don't understand CH---let alone my quest for a special cup of tea---that just might have the majic to help with this
"special condition". I think it's worth the try---and it's worth the feeling of hope. I have done my homework at clusterbusters also ---next cycle due in April---so I think the time is right.
Didn't mean to write a book here---I most certainly feel for a chronic that would have to detox to try this----that's almost impossible and it's not fair.  
An uncomfortable psychadelic ride---can't be any worse than dry heaves---right???     Thanks again  Sophie
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Re: Question about "alternitive" therapy
« Reply #10 on: Dec 4th, 2004, 1:30am »
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Let us know how it turns out, Sophie. I hope you get permanent PF time... Smiley
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Re: Question about "alternitive" therapy
« Reply #11 on: Dec 5th, 2004, 10:51pm »
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uncomfortable?
 
NO!  Not as bad as a prick of a needle.
 
 
 
 Wink
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Re: Question about "alternitive" therapy
« Reply #12 on: Dec 6th, 2004, 9:14am »
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Some of the minority that claim lack of success on the shrooms apply different standards for measuring success compared to conventional meds.
 
For starters the active ingredient in shrooms is present is much smaller quantities than any conventional med.  Secondly your doctor will usually stop any existing meds prior to prescribing a new one.  Thirdly the doctor will quite often spend a few weeks determining the optimum dose.  Fourthly if you go back after the first 4 tabs and tell the doctor that it hasn't worked, you'll be told to give it a chance.
 
When it comes to shrooms we have an optimum operating range somewhere between 1/8th gram e.d.c. and 5 grams e.g.c.  To scale that to say verapamill that would be the difference between 25mg and 1000mg.
 
The optimum dosing frequency is somewhere between 8 hours and 7 days.
 
Then we also have the major known effective variations of LSD and LSA to take into account, let alone the minor known effective variations of various plants and shrooms that contain LSA, psilcybin, psilocin, and God knows what else to boot.
 
The there's the drug interactions.  We're still groping in the dark here.  Detoxing definately helps - that much we do know.  The question is whether this is because certain conventional meds interfere with shrooms, or aggrivate the CH conditions, or a mixture of both.
 
Then there's the question of mechanism by which the treatment works.  It certainly works better when taken as part of a holistic programme of sleeping, eating, and exercise... but this is probably the case with most drugs.
 
So with all that taken into account it's amazing that we've had ANY success.  That's why someone taking 4 hits at a fixed dose and frequency in conjunction with other meds then chalking themselves down as a failure doesn't really cut the mustard around here.
 
Yes there are medical trials (hopefully) about to take place, but those will initially be fairly limited.  Their main aim is to demonstrate that YES there is something worth investigating further.  In the meantime, and the meantime may last several years... it's still down to ClusterBusters, past, present, and future to attempt to figure out, as best as we can, what the fuck is going on LOL.
 
So we need all the input we can get.
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Re: Question about "alternitive" therapy
« Reply #13 on: Dec 6th, 2004, 9:47am »
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Gee, I guess I did it wrong (again)!
 
Thanks for the chuckle.
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Re: Question about "alternitive" therapy
« Reply #14 on: Dec 6th, 2004, 10:50am »
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Sophie,have you tried oxygen?
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Re: Question about "alternitive" therapy
« Reply #15 on: Dec 6th, 2004, 11:50am »
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on Dec 6th, 2004, 9:47am, Bob P wrote:
Gee, I guess I did it wrong (again)!
 
Thanks for the chuckle.

 
You and I have been through this before.  Unless you qualify the "failed" statement, then I'll feel compelled to put it in context.  At least on this occasion I did so with a little more subtlety than usual.
 
The bottom line is that you took a number of doses (off the top of my head I recall it was 4, but may have been more).  You took them one week apart, and they were substantial doses.  At that time we considered this to be the best approach BTW.  BUT during this time you were also taking prednisone and I believe there was at least 1 shot of sumatriptan along the way... contrary to accepted wisdom.
 
Since then we have observed that predisone plus shrooms results is an exceptionally high failure rate.  We've also observed that sumatriptan significantly reduces the chances of success AND has a tendancy to prolong the process.  It has also been posted here independently that some doctors and scientists now believe that sumatriptan can prolong the cycle and may cause episodics to become chronic.
 
Three years ago a couple of the pioneering clusterbusters attempted to break their cycles with substantial doses paced approx 1 week apart, and in those instances took many such doses.  As I recall the this was found not to be the optimum technique.  I think BobW personally knows quite a lot about this - and its all in the clusterbusters archive.  
 
Since then people have been using more moderate doses with greater success, and some people recently have been using extremely small doses very frequently also with a fair degree of success.  Many people have also been adopting the maintenance or preventative technique of regular moderate dosing between episodes and this has proved the most successful of all.
 
Four or so doses in conjunction with other medications is at best a flawed example, and certainly not one I'd hold up as a shining beacon of hope.
 
Next I suspect that we're going to hear from Margi, so to prequalify that tale I'll point out that sumatriptan, verapamill, predisone, O2, and topamax all regularily fail to prevent/abort attacks in the vast majority of people, but those sporadic failures are seldom if ever held up as examples of total failure.  In most cases the doctor will simply change tact regarding the dose.  
 
Someone using shrooms 4x in 4 years with one failure... well that doesn't necessarily mean they have stopped working.  That would be a very big conclusion to jump to however convenient.  It's asking a lot for any medication to halt an episode at peak cycle!!!  In fact, to the best of my knowledge nothing else can.
 
Shrooms should be measured by the same standards as conventional meds.   Those results that are ground out over a lengthy period, with varying doses, and frequency of dose, and with a detailed kip log kept on a daily basis and all other meds avoided are of more value in determining the effectiveness of this treatment.
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Re: Question about "alternitive" therapy
« Reply #16 on: Dec 6th, 2004, 11:52am »
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on Dec 3rd, 2004, 10:46am, karma wrote:

One more drawback to trying this method, particularly for chronics, is that your body needs to be free of triptans and some prevents. This can be real hard for some to accomplish.

 
I've been in cycle now for about two weeks after being PF for 2 years.  I've been reading for two days straight and am so confused I can't see straight.  I really want to try this alternative thearapy and am persuing locating some right now.  I am using Imitrex injections nightly.  I was on prednisone up to last friday and have been on a very low dose of topomax since then.  Do I need to stop the topomax and if so for how long before I make an attempt?  What about the trex?  I've asked for some O to get me through so I'd be willing to stop everything else if needed.  Any help here or via PM would be greatly appreciated.
Thanks
Kurt
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Re: Question about "alternitive" therapy
« Reply #17 on: Dec 6th, 2004, 12:01pm »
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In all honesty given the predisone, imitrex, and topomax I suspect that this would be a waste of time.  Best save the shrooms for a preventative role next time around.  For this episode at least it sounds like you've exhausted your options.
 
on Dec 6th, 2004, 11:52am, heprat wrote:

 
I've been in cycle now for about two weeks after being PF for 2 years.  I've been reading for two days straight and am so confused I can't see straight.  I really want to try this alternative thearapy and am persuing locating some right now.  I am using Imitrex injections nightly.  I was on prednisone up to last friday and have been on a very low dose of topomax since then.  Do I need to stop the topomax and if so for how long before I make an attempt?  What about the trex?  I've asked for some O to get me through so I'd be willing to stop everything else if needed.  Any help here or via PM would be greatly appreciated.
Thanks
Kurt
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Re: Question about "alternitive" therapy
« Reply #18 on: Dec 6th, 2004, 12:52pm »
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Ah, just like the good old days.  Flash's "facts" aren't always correct.
 
Quote:
It has also been posted here independently that some doctors and scientists now believe that sumatriptan can prolong the cycle and may cause episodics to become chronic.  
You fail to mention the shroom user who is sure the alternative treatment caused her to become chronic.
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Re: Question about "alternitive" therapy
« Reply #19 on: Dec 6th, 2004, 12:57pm »
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on Dec 6th, 2004, 12:01pm, Flash wrote:
In all honesty given the predisone, imitrex, and topomax I suspect that this would be a waste of time.  Best save the shrooms for a preventative role next time around.  For this episode at least it sounds like you've exhausted your options.
 

 Cry
Thanks for the info Flash...but my heart just sank.  My cycles can last for over 2 months and I was looking for some hope.  The pred and topomax have been no help.  The trex works but won't knock the cycle out.  I was under the impression that the alternative treatment was effective stopping cycles as well as preventing them.  Any idea how long the meds would linger?  If I were to switch to O2 only for the next week...might the treatment be effective?  I am willing to try anything.
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Re: Question about "alternitive" therapy
« Reply #20 on: Dec 6th, 2004, 1:53pm »
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Heprat,  
 
I can't speak for Flash, but I will give my opinion.  Detoxing will give you your best chance of success.  The longer you detox the better.  The sooner (into your cluster) you dose, the better.  But, there is still hope that it will work for you this cylce.  I think that there is nothing that would give you a better chance.  
 
My best guess would be to detox for at least a week and longer if you can stand it.  As for your question about the topomax,  you say it's not helping so you may as well detox off that too.  (As always talk to your doctor...)
 
Knocking out a cluster that is already established can be a discouraging and painful few weeks, but when it works....
 
Click on this link ( http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1069040412;start=0 )for a very interesting thread on the use of shrooms and how tough and rewarding it can be.  Warning this will take up a lot of time.
 
Good Luck
 
Jesse
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Re: Question about "alternitive" therapy
« Reply #21 on: Dec 6th, 2004, 2:10pm »
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Thanks Jesse
I have since read the FAQ on the clusterbusters site and have found the answers as well.
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Re: Question about "alternitive" therapy
« Reply #22 on: Dec 6th, 2004, 2:34pm »
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JMIN,
 
Yes, I was med free when I took the first, semi-visual, dose.  When it did absolutely nothing for my clusters, I went into conventional med mode but continued to dose every week for a total of four doses.
 
I am stocked and ready to try again when the next cluster starts.
 
Nobody said anything about not persuing the treatment.  A quote from my first post in this thread Quote:
All that can be said right now is that it looks promising, and if one is of the mind to, it's worth a try.

 
My only complaint with the treatment and some of the treaters is an attitude that this is the cure all and if it didn't work for you, you screwed it up, and if you don't try it you're nuts and you should donate your life savings to us and if you don't you're nuts.
 
Go to the 'Busters page and read the very earliest of the archives Quote:
Posted by Bob P (129.65.46.87) on November 05, 1999 at 15:29:17:
 
In Reply to: Liberty Cap treatment 100% sucessful for 4th year posted by Flash on November 05, 1999 at 11:22:28:
 
I put more stock in Flash's shroom theory than anything else. I think he really may have stumbled onto the ultimate preventative. Not a cure. The mechanism for the CH is still there but a preventative. If the medical community would like to do a study of the effectiveness of this, I'll volunteer to try it my next cluster. If not, I just may try it on my own. Lots of web site that tell you how to do it.
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Re: Question about "alternitive" therapy
« Reply #23 on: Dec 6th, 2004, 4:16pm »
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It takes about 2 months to grow shrooms...  Unless I was fully detoxed then I personally would not catch a plane overseas for a couple of weeks in order to purchase and consume them legally.
 
Sorry but next time be prepared in advance.
 
on Dec 6th, 2004, 12:57pm, heprat wrote:

 Cry
Thanks for the info Flash...but my heart just sank.  My cycles can last for over 2 months and I was looking for some hope.  The pred and topomax have been no help.  The trex works but won't knock the cycle out.  I was under the impression that the alternative treatment was effective stopping cycles as well as preventing them.  Any idea how long the meds would linger?  If I were to switch to O2 only for the next week...might the treatment be effective?  I am willing to try anything.
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Re: Question about "alternitive" therapy
« Reply #24 on: Dec 6th, 2004, 4:34pm »
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on Dec 6th, 2004, 2:34pm, Bob P wrote:
My only complaint with the treatment and some of the treaters is an attitude that this is the cure all and if it didn't work for you, you screwed it up, and if you don't try it you're nuts and you should donate your life savings to us and if you don't you're nuts.

 
No if it didn't work then then there is a strong chance that either the strength of the dose, the frequency of the dose, or a drug interation was to blame.  That is waaaay different to "you screwed up".  Just in the same way as it's waaaay different to "the shrooms don't work".  We are not looking to apportion blame, just trying to point out that every failure tells us much as every success... but making a careful distinction between a failed attempt and a failure on either the part of the shrooms or the individual.  Bottom line: you did not fail, the shrooms did not fail, it was your attempt that failed.  From that information we started to speculate that predisone may have played a role.  Subsequently we have seen failures in others that had taken predisone.  Therefore we now recommend no predisone... not a bad recommendation with or without the shrooms BTW that stuff sucks!
 
Now the person that speculated the shrooms turned her chronic...  There's more to that story including using unidentified street sourced shrooms that created a state entirely inconsistent with psilocybin.  To be honest after reading the reports I ended up totally confused as to what had actually occurred.
 
I do agree that occasionally the shrooms can under certain circumstances make things MUCH worse for a period of up to 5 days, however in my experience (this has occured to me 3x in 11 years) this has been followed by an abrupt termination of the episode.  However I'm a hard bastard that's never resorted to trex in his entire life... well not entirely true, in fact the thought of using trex scares me shitless LOL.  It could be that using something like trex in that situation could cause serious problems.  Who knows?
 
This time, which would appear to have started on Friday, I'm waiting till my episode gets well underway and then I'm going to try and terminate it with the sip method.  Should be interesting but can't say I'm looking forward to it.  Can't believe it's come round so fast.
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