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   Author  Topic: Question about "alternitive" therapy  (Read 10790 times)
pinksharkmark
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Re: Question about "alternitive" therapy
« Reply #50 on: Dec 9th, 2004, 12:20pm »
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BobP raises a point I have wondered about myself in the past --
 
Is the success of those who have...  
 
1) had initial failure while taking other meds
2) then subsequently stopped all other meds
3) then had success with psilocybin
 
...due to them having stopped taking other meds or is it just that they were people who would have had to take multiple doses even if they had been med-free from the beginning?
 
The more reports I see at Clusterbusters.com the more I lean towards the former -- the less residue of certain other compounds there are in someone's system the fewer doses are required to terminate a cycle. Has this been scientifically proven beyond a shadow of a doubt? Nope, not yet. But it's the best we have to work with at this time.
 
I have also wondered about another relatively common scenario where people have had:
 
1) little or no success with small doses but great success with subsequent larger doses
2) little or no success with larger doses but great success with subsequent smaller doses
 
Is it the variation in dosage size that is making the difference or is it the total number of doses regardless of size? In this case it is much more difficult to say one way or the other. People are having success with both methods. At the moment I am leaning towards favoring the larger less frequent doses, but I am not 100% convinced on this one.  
 
For those not familiar with what I call a "larger" dose, please note I am not referring to a full-on Woodstock type dose where you become one with the universe, I am talking about a dose where the fact that you have taken a psychedelic compound becomes impossible to ignore -- some mild audio and visual effects are apparent.
 
Bob has also speculated that those who have tried this with no success tend to not report their failures in greater percentages than those who have had success. I admit I have a hard time accepting this speculation. In fact, given the attention this treatment has received here I feel if anything the reverse would be the case. I certainly recall having seen reports of failure posted here -- probably up to a half dozen by now and I may have missed some others. I must also note that no one seems shy reporting their failures with Topomax, Sansert, verapamil, triptans, oxygen, etc. etc. Why would they be less likely to report their failure with psilocybin? Would they not be as eager to denounce yet another "snake oil" treatment as those who denounce magnetic bracelets and Noni juice? Help me out here!
 
For what it's worth, I personally believe there are bound to be some people for whom the psilocybin/LSD/LSA treatment will inevitably be less effective and maybe even completely ineffective. But the more reports I read the more I feel the percentage of such people will remain low -- less than one in ten as a broad guess.
 
As a final observation I will repeat a significant point raised here many times before -- a very large chunk of the reports we receive are from people for whom nothing else has worked. I do not exaggerate when I say the laundry list of preventative medications tried by some of our members exceeds three dozen! I feel safe in saying that a very significant percentage of our testers have extremely refractory CH. It therefore comes as no surprise to me that there is the occasional failure. Maybe for these people no medication currently known will work. I certainly hope not, but it is not outside the realm of possibility.
 
I can't help but wonder what the percentages would be re success/failure if every clusterhead on this board would try psilocybin or a similar compound rather than continue with verapamil/O2 lithium etc. I can certainly understand why someone would choose to continue their successful regimen rather than abandon it for something new, so I realize this will never happen. I just feel that if we are getting such a phenomenal success rate with so many who are so refractory to the standard meds, we couldn't help but yield even more impressive percentages if it were broadened to include those whose cycles are more easily manageable.
 
 
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Re: Question about "alternitive" therapy
« Reply #51 on: Dec 9th, 2004, 12:27pm »
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Maipet,
I've not heard or read any comments that discourage anyone from trying it. I am however discouarged that more people won't give it chance.
I have read your ongoing thread about D's personal success and am vey encouraged.
Thanks
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Re: Question about "alternitive" therapy
« Reply #52 on: Dec 9th, 2004, 2:51pm »
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Miapet,
I had been reading your thread for several months and following the progress. I have to thank you for making me think and ask questions. I have great hopes for my next battle----thanks to you and everyone else.
              Sophie
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Re: Question about "alternitive" therapy
« Reply #53 on: Dec 9th, 2004, 3:17pm »
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I wasn't implicating any one individual, nor this specific thread.  I have been coming here for almost a year now, and more than once,  if anyone even asked about the alternative, the negative responses would hit them.  
While I do believe everyone needs to be aware that it isn't a 'one time cure all' and may need to be tweaked or adjusted for each individual . . .the same holds true for 'traditional' CH drugs.  
I also don't see (very often) anyone telling people who ask questions about DHE, Prednisone, Trex, Ergot, or much of anything else, that they don't work.  The general response appears to be, well, adjust it, you don't have it right yet . . .. why is it okay for that to be the response when it's a traditional med???  OR, when someone asks, for example, how lond does it take for Topomax/Depakote/whatever to work . .. if people say it/the didn't work for them, they still say:  good luck.  
The big difference (aside from the potential of being p/f), that I see, is that  the alternative isn't phucking up your circulatory system, your immune system, your sex life, or anything else (except the beast).  
 
*positive light and energy*
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Re: Question about "alternitive" therapy
« Reply #54 on: Dec 9th, 2004, 4:25pm »
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Miapet,
Its used to really bother me to see people slowly killing themselves physically and mentally by going from drug to drug and then more drugs to counteract the drugs that were being taken. It still bothers me but I realized that everyone has choices.  
The grip of Ch can be very powerful. When it is allowed to become the most powerful and dominant thing in your life it can be very hard to give up. It sounds crazy I know but if you look at the time that people dedicate to this particular board it is obvious that CH is a very important part of peoples lives.  
 
People need to consider the very first question that was asked in this thread.
 
If the psilocybin treatment is as successful as it sounds, why aren't more of us trying it?
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Re: Question about "alternitive" therapy
« Reply #55 on: Dec 9th, 2004, 5:15pm »
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on Dec 9th, 2004, 4:25pm, karma wrote:

 
If the psilocybin treatment is as successful as it sounds, why aren't more of us trying it?

 
Possible legal ramifications??? I don't know.
I'm still dealing with this $hit......Went into cycle just as "D" came out.......been a long time.
Anyway...I am more and more tempted to give it a go, however, What are the possibilities if even the slightest that I get caught growing or buying....and there goes my Teaching certification, my Board Certifications, and my life....?
Now I certainly want to be without pain and without meds yet I don't have the answer for my own question.... Do I risk it? Can I take the chance if it is a slight possibility.
 
I have to learn more from everyone here or others who have done this.
 
Feel well all.
 
E.
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Re: Question about "alternitive" therapy
« Reply #56 on: Dec 9th, 2004, 7:34pm »
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E-Double,
 
Here's my opinion.  
 
I haven't heard of a single Cluster headache user being "busted" yet.  Of course that could always change, but you'd be very unlucky to be the first.  Shrooms are mostly overlooked  by the law: not tested for on standard drug tests; drug sniffing dogs are not trained to detect it; lawmakers didn't go to the trouble of making spores illegal; Hell, people on this board have openly admitted that they are growing shrooms and still nothing.  However, I can't deny that if prosecuted it would get really ugly.  (I'll insert my usual plea for drug law reform here.)
 
If you do try it and it works, it will all seem crystal clear.  That is why so many people talk about it like it's a religion.  
 
I hope you get better regardless of how you decide.
 
Jesse
« Last Edit: Dec 9th, 2004, 7:36pm by JJA » IP Logged

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Re: Question about "alternitive" therapy
« Reply #57 on: Dec 9th, 2004, 11:04pm »
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Hi y'all.  Most of you don't know me.  But I know you.  I check on you every day.
 
I became a lurker when I turned into a strident shroom zealot.  Be quiet!  People can form their own conclusions.   The info's all there for anyone to find. Let the more tactful ones answer their questions.
 
Now I'm feeling guilty.  I'm feeling as tho some of you think that BobW, Pinky, Flash and a few other crazies are the only ones out there.
 
I remember when I first found this site.  What a relief.
Learned a lot.  Get the trex vials and split the dose.  Try water, exercise, capsacin and lidocaine up the nose, give melatonin a shot.  Most of the mainstream stuff had worked for us for some period of time and failed.  Husband is the clusterhead, I'm the researcher.
 
I started reading the old posts.  Looking for a trend.  Something we'd never tried but seemed to work for many.  I remember the first shroom post I read.  WTF!  Holy Cow!  Started searching and reading.
 
You can too.  Try the archives button to the left.  I'd suggest starting in fall 2000.  They're easy to find.  Most people tried to use a keyword in their titles that would help you find them.
 
I scanned some today.  Amazing the number of success stories who no longer post.  Where are you guys?  If you're lurking like me, time to report in.
 
Here's what I find interesting.  One can read dozens of posts about all kinds of meds.  Some work, some don't..for some people.  Some, like verapamil work for many...but not at the same dosage.  
 
Mention shrooms and the world is polarized.  All trial and error here.  Don't even know how much chemical is injested since we can't distill it from the mushroom.  Yet, a core group of people slog along, getting data from scores of people and drawing conclusions about interactions with other meds, the proper way to dose, and a suggested amount and number of doses.  And, those same people are so generous with their knowledge.
 
E-Double...I know how you feel.  Felt that way once too.
After my decision was made, posted to another who felt as you do.  You'll find that discussion somewhere around 10/1/2001 if you've a mind to look at it.
 
If someone can manage their CH with a combo of traditional meds there is a reluctance to rock the boat.  That's fine.  We couldn't.  PF 100% with no med side affects is the goal at my house.  Shrooms allowed that to happen.
 
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Re: Question about "alternitive" therapy
« Reply #58 on: Dec 10th, 2004, 12:11am »
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BobP,
 
For once, a psilocybin treatment thread that you have become involved in has actually turned into a healthy exchange of questions and idea's, instead of a bitch slap match that you seem to get off on so much.
 
That said, I have no grudge or ill will towards you, actually it's quite the contrary. I have to thank you. When I found Flash posting here in 1999 about his success with this treatment, you were one of his strongest supporters, while others thought he was nuts. Your posts helped sway me to try shrooms. Thank God I did. I've been med free and haven't had to see my Neuro in 5 years. This has changed my life and to see it do the same for so many others has been truly amazing.  
 
I know you have done a lot of work for OUCH as well as helping people here, and I commend you for that. I just don’t understand your approach to this subject often times. You tend to try to push as many buttons as you can, to see if you can get Flash, PinkFloyd, or whoever riled up. I think there are some underlying reasons for this that I am not aware of.    
 
I truly wish you success with your next attempt at this treatment. Maybe this time you will do it right. laugh
 
It’s really great to see people I haven’t seen post in a while like PinkSharkMark, whose posts are always articulate and thought provoking. Also people who have tried this treatment and are willing to share there experiences with it in an open forum.
 
I can’t thank enough, Flash, PinkSharkMark, PinkFloyd, all the Clusterbusters, DJ, and yes even you Bob, for this freedom from the fear and destruction of Cluster Headaches
« Last Edit: Dec 10th, 2004, 9:49am by Flounder » IP Logged
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Re: Question about "alternitive" therapy
« Reply #59 on: Dec 10th, 2004, 7:39am »
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on Dec 9th, 2004, 5:15pm, E-Double wrote:
Possible legal ramifications??? I don't know.  Anyway...I am more and more tempted to give it a go, however, What are the possibilities if even the slightest that I get caught growing or buying....and there goes my Teaching certification, my Board Certifications, and my life....?  Now I certainly want to be without pain and without meds yet I don't have the answer for my own question.... Do I risk it? Can I take the chance if it is a slight possibility.

 
OK this is a serious step and not one to be taken lightly.  I have quite a lot of experience here from my days as a scumbag.  There are ways around this that while they occur to the criminal mind, aren't things that Joe Public would normally dream up.  The key is to minimise the risk to the point where it become negligible.
 
So here's a step by step guide:
 
1) Most Law Enforcement Officers wouldn't know a shroom if they found one in their donut.  
 
2) Philosophers stones are even harder to identify because there's nothing to see but a bag of earth; they grow under the ground.
 
3) A bust is very unlikely, but these usually take place due to loose lips.  You blab to someone that you trust, when you're drunk for instance, and ultimately some fucker that hates your guts finds out through the grapevine and snitches.  
 
4) The smart thing to do is have someone else whose career wouldn't be jeopardised by a bust store the shrooms during the growing period.  Like your ageing mother.  It's also important not to leave any genetic fingerprints on the bags BTW.  This is avoided by those little polythene disposable gloves, that incidentally you have to wear for reasons of hygene when working with the shrooms anyway.  
 
5) Keep the bags hidden at all times.  Philosophers stones don't need light (correct me if I'm wrong), they also grow at room temp.  A good place to store them is outside in an outbuilding that isn't locked but is maintained at room temp.  Hey any fucker could have stashed them there in you old mothers greenhouse - probably them pesky kids next door.
 
6) Grow a whole bunch at one time, that way the risk is limited to a short time period.  Once it's time to harvest you process the truffles and turn them into a VERY concentrated tea.  The kind where a little goes a long way.
 
7) Invest in a case of some nice bourbon like Woodford Reserve that weighs in at 100 proof / 50% abv.  Mix the tea into the booze so that you end up with bottle of hallucinogenic bourbon cum fortified shrooms tea at around 30-35% abv 60-70 proof.  You can go as low as 20% but it's best to keep it strong.  This stuff will keep forever!  Just be sure to keep your case of booze in a dark place like a cupboard.
 
Cool So after 2 months of risk you end up with a nice case of booze.  No big deal.  Just don't blab to anyone and there is absolutely ZERO chance of getting caught.  Now you have enough psilocybin to treat yourself for a very long time.
 
That's how a smart criminal would approach such a situation.  And unlike you the smart criminal would probably be under observation of some sort.
 
The difference between the smart and the stupid is that the smart take EVERY precaution and leave nothing to chance.
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Re: Question about "alternitive" therapy
« Reply #60 on: Dec 10th, 2004, 8:30am »
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I would like to add to Flash's comments.  There are some that are at higher risk with this than others, some can lose everything, their ability to remain in the US, their careers, their kids etc.  
 
One thing to consider is that if you are on very good terms with another buster, you can always forward the money to them and have them purchase your mycobags and spores for you and grow in their location.  This of course only works with those that are already growing.  It adds a bit of extra security so that you aren't directly attached to anything.  However, should something go awry, you best be prepared to help out the person who has helped you out.
 
This doesn't work for new folks trying things out of course, but for those that have been around awhile and have close friendships it may be an answer.
 
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Re: Question about "alternitive" therapy
« Reply #61 on: Dec 10th, 2004, 8:54am »
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In addition I would:
remember that the best defense is a good offense.
Catalouge every move you have made in treating CH so far. treatments, costs, effectivness, quality of life and health risks. Put it in writing and keep it updated.
Have someone Video tape you while your experiencing a hit.
There is not a judge or jury in the world that would blame you for trying this treatment to get relief.  
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Re: Question about "alternitive" therapy
« Reply #62 on: Dec 10th, 2004, 9:56am »
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One day, while my first crop was fruiting nicely in the corner of our upstairs master bedroom, there was a knock on the door.  I opened the door only to have the guy standing there introduce himself as an attorney for the County.  He was investigating a police brutality charge by the kid accross the street who got his bell rung after he ran from the cops and they cornered him in his front yard.  I explained what I had seen that night from my bedroom window (4 sheriff cars, 2 fire trucks, 1 ambulance).  He took it all in and then, gulp, he asked if he could take a look from my bedroom window.  I calmly escorted him upstairs and let him look at the view from the window, stood there and talked for a few minutes, then back downstairs and left.  He never realized the plastic storage container in the corner had anything growing in it.
 
Quote:
For once, a psilocybin treatment thread that you have become involved in  
has actually turned into a healthy exchange of questions and idea's, instead of a bitch slap match that you seem to get off on so much.
The thread isn't dead yet Flounder.  I'm still liable to ask too pointed a question or challenge a statement that someone professes as fact but can't back up and they will get all defensive and insulting, like usual.
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Re: Question about "alternitive" therapy
« Reply #63 on: Dec 10th, 2004, 12:07pm »
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I'd be tempted to challenge a few of your statements Jmin but I'm leaving for a couple of weeks in Spain and just too dang busy tying up loose ends at work to play today.
 
So for now, fair enough.
 
Hope you all have a merry Christmas.
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Re: Question about "alternitive" therapy
« Reply #64 on: Dec 10th, 2004, 12:34pm »
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well, I've got time to challenge a couple of those statements.  
 
1.  "The treament is the most affordable treatment that has ever been effective for clusters."
We pay $20 a month for oxygen when Mike is in cycle.  Out of cycle, we keep the tank for free (only pay to refill it) - and this is entirely reimbursable by our medical insurance.  Granted, we didn't grow the last time Mike tried the treatment, but it cost us $50 on the "black market".  
 
2.  The treatment, unlike others, does not become inaffective over time.  
Beg to differ here.  We THINK it kept Mike in remission (or at least changed the length of his remission) but when the cycle did finally come back, the treatment made everything worse.  He was - I REPEAT - completely med free at time of dosings.  We think he did build an immunity to it.  Our opinion only.
 
3.  The treatment has provided a PF existance to MANY long term chronics who have tried the entire spectrum of other known treatments.  
I know of three chronics who either worsened or felt no effect after treatment.  One of them became chronic after dosing and she had been episodic prior to this.
 
4.  The treatment has saved families, lives and the sanity of countless persons who had reached the end of the rope.  
Sorry but I have to call you on this.  The cluster websites (here, UK, Italy, Canada) have most likley done all these things but on a much, MUCH grander scale.  Finding other folks who understand clusters is right up there on the list of effective treatments.  This is a pretty broad and 'with blinders on' kind of statement to make about one single treatment that does not work for everyone.
 
I'm quoting Jonny here:
 
"No one thing works for everyone, no matter how you slice it...that is how it is and will always be.  "
 
he's 100% correct, saying this.  
 
I'm not trying to discount the wonderful work the Busters are doing here so, everyone, please retract your claws.  Mine come out, however, when blanket statements like this are made without proof or substance.  Yes, the treatment works well for some.  But not for everyone.  We have proof of THAT.  There IS no cure for cluster.  Yet.
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Re: Question about "alternitive" therapy
« Reply #65 on: Dec 10th, 2004, 2:00pm »
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on Dec 10th, 2004, 8:54am, karma wrote:
In addition I would:
remember that the best defense is a good offense.
Catalouge every move you have made in treating CH so far. treatments, costs, effectivness, quality of life and health risks. Put it in writing and keep it updated.
Have someone Video tape you while your experiencing a hit.
There is not a judge or jury in the world that would blame you for trying this treatment to get relief.  
 I wish this was true Karma.  But in the US, if we look at the precedents with medical marijuana it doesn't work.  Psilocybin and marijuana are both schedule I substances (meaning they have no medical use).  On the federal level this means you're not allowed to plead a medical defense.  The jury would never hear the words cluster headache.  (Again, I'll insert my plea for drug law reform.) This applies to US Federal Law.  It may vary from state laws.  
 
Jesse
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Re: Question about "alternitive" therapy
« Reply #66 on: Dec 10th, 2004, 2:11pm »
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on Dec 9th, 2004, 12:20pm, pinksharkmark wrote:
Would they not be as eager to denounce yet another "snake oil" treatment as those who denounce magnetic bracelets and Noni juice? Help me out here! 

Pink, it goes a bit far to make reference to the "alternative treatment" as being alluded to as "snake oil".  I think that has not been reflected here.  A sufficient enough point has been made to make this treatment a substantial curiosity worthy of the study undergoing now.  "Not willing to try at this time" and the term "snake oil" can be separate designations with an exclusive connotation from magnetic bracelets and Noni juice.  
 
CB's does good work and have helped many.  I think "snake oil" is too loose a term to be utililized here for interpreting the thoughts of those simply not currently imbibed of the same enthusiasm.  
 
More than several good points have been made about it, but as of yet some cannot console the benefits of being a "smart criminal".  
 
 
 
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Re: Question about "alternitive" therapy
« Reply #67 on: Dec 10th, 2004, 2:15pm »
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o2 is a lifesaver for some . . not all . . . .and not everyone has insurance, so the cost isn't always a co-pay.  Of course, there is always the 'buy a tank and use welders o2' option (which is good, if that's what you have to do  . .then do it!) . . .but that isn't cheap either.
 
The OUCH sites do help people . . .they help people find out needed information .  . .they give people a way to connect with others who understand .. .but I don't think they save families . . .we read (way too many times) about another family/relationship falling to the beast . . .this is unfortunate (to say the least) . . .would they have fallen anyway?  hard to say . . .kicking the beast's ass to the curb is a good way to allow a relationship a chance at working on it's own, without the beast getting in the way.
I am thankful for this site, as it gave me a place to look at information quickly and easily.  It gave me people to ask questions to.  It allowed me to find answers to hard questions.  It allowed me to make (for us) the right decision.
*positive light and energy*
miapet
oh, and D is one of the many chronics that this treatment did help . . .it not only gave us our lives back, it saved them.
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Re: Question about "alternitive" therapy
« Reply #68 on: Dec 10th, 2004, 3:24pm »
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Ok, Margi, I've got to re-challenge some of your challenges.  Wink
 
1.  Your black market $50 was $50 more then you had to spend for oxygen, thanks to the Canadian health system. Butt for an US resident that money buys exactly one Imitrex shot or one tank full of oxygen, and you know damn well that many clusterhead has to buy many more out of his own pocket. So, Jmin's statement The treament is the most affordable treatment that has ever been effective for clusters. holds true for everyone but the few who live in a country where healthcare comes 100% out of the pocket of taxpayers.
 
2.  We think he did build an immunity to it. - Not exactly the kind of statements to challenge or disprove what someone else said.
 
3.  Jmin wrote: "The treatment has provided a PF existence to MANY long term chronics who have tried the entire spectrum of other known treatments."  Note, he said "MANY", not "all". So, three or (a few more) failures do contradict Jmin's statement. Couldn't be the case who became chronic not just "think" (as in 2. above) it was because of the shrooms?
 
4.  Sure, Margi, the CH websites were, and are, a tremendous help for any clusterhead. But despite that, many have lost family, job, sanity, house and dog, simply because this fucking affliction is so demanding both emotionally and financially. So I can wholeheartedly sustain Jmin's The treatment has saved families, lives and the sanity of countless persons who had reached the end of the rope. (Well, the "countless" may be a bit exaggerated, unless he is a very poor in counting Grin)
BTW, this, and the Canadian, web site have also helped many clusterheads to learn about psilocybin, one of the most promising CH treatment. Sadly the readers of the UK and German CH-sites must go abroad for this information, because the carriers there are too fucking yellow cowardly and gutless to allow a single word about this.
 


 
A question for Margi and Bob P: Do you have a similar disturbed attitude towards antibiotics? After all, although they can cure many infectious disease, they are far from 100% effective and can have bad side effects like the squirts.
 
PFNADs, Ueli                 smokin
 
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Re: Question about "alternitive" therapy
« Reply #69 on: Dec 10th, 2004, 3:45pm »
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Ueli, I don't think I have a "disturbed" attitude towards shrooms.  Far from it, in fact.  I don't discourage ANYONE from trying it and those that have been here a while will remember that Mike WAS one of the first ones on the bandwagon.  
 
We, at OUCH Canada, were the first OUCH to publically discuss the treatment.  I am the webmaster for OUCH Canada, Ueli.  I hold the power to the delete key there.  Never once has any talk of shrooms or busters been deleted.  We, at OUCH Canada, believe in bringing every available treatment option to the table for discussion for clusterheads.  I think that's a pretty fair and non-biased attitude, don't you?
 
What I DO have a "disturbed attitude" about is folks claiming that shrooms are a cure.  And that if it fails for someone then it must have been that the person screwed it up.  Or accusing folks who have legitimate reasons for not wanting to try this route that they enjoy cluster pain or need to share misery with an internet support group.  Yes, Ueli, that does disturb me.  If someone doesn't want to try a certain treatment, that is 100% their choice.  NOT the shroomers' choice.  THAT's what disturbs me.
 
Sure, shrooms work for some folks.  But not all.  They are not a cure.  If they were a cure, why do folks have to keep re-dosing?  
 
And yes, mia, oxygen works for some.  But not all.  But the folks for whom oxygen does work, don't continue to be militant about pushing it and steamrolling over folks for whom they don't assist.  Also, without this site (ch.com) you would not have learned about the shrooms, would you?  Would you have searched out psilocybin treatment for clusters on your own?  Don't lose sight of that.  Tell the truth...where DID you learn of the shroom treatment?  I DO believe that ch.com HAS saved many a life and relationship.  Don't think for one second that it hasn't.  
 
I've counselled hundreds of supporters/sufferers in my six-plus years here and I do always suggest ALL routes of known therapies out there.  And yes, I do always suggest the shroom route if the person is otherwise med free.  Just as I do the water treatment.  And the oxygen treatment.  I'm all for non-chemical warfare against clusters.  
 
So if that makes me appear to have a disturbed attitude about this, then so be it.  I think, Ueli, you need to rethink your stance on MY stance.
 
edited to add:  Just so you know, Ueli and anyone else who might believe otherwise?  I have also helped to make sure other clusterheads could make tea in the past, (and would again in the future if I could) if they were one of the lucky ones for whom the treatment works.    
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Re: Question about "alternitive" therapy
« Reply #70 on: Dec 10th, 2004, 4:12pm »
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I find it to be the most effective treatment for controlling MY cluster headaches with the least cost and the least side effects.
BY FAR!
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Re: Question about "alternitive" therapy
« Reply #71 on: Dec 10th, 2004, 4:18pm »
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on Dec 10th, 2004, 4:12pm, vig wrote:
I find it to be the most effective treatment for controlling MY cluster headaches with the least cost and the least side effects.
BY FAR!

 
See?  now THAT's what I'm talkin' 'bout.  Non-judgemental, non-pushy, experience-sharing positive post.  In response to that I say:  Good for you, Paul! I'm so happy you've found YOUR magic bullet! Smiley  
 
we're all trying to stop the same pain folks.  
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Re: Question about "alternitive" therapy
« Reply #72 on: Dec 10th, 2004, 4:40pm »
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Margi, excuse me???  Why not re-read my post.  I gave credit to ch.com . . .I just didn't give it the credit of saving families or relationships.
Let someone be pro-alternative, and they are 'steamrolling' but let someone be anti-alternative, or negative about it, and they are doing a freaking public service.  
Some time back I posted on the CB site, thanking everyong there for being so much more welcoming and friendly, even when someone didn't do the alternative, or even when they were wavering between should I/shouldn't I . . ..not once on the CB site have I seen a person deliberately (or 'on accident') hurt another person's feelings.  I wish I could say that here.
*positive light and energy*
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Re: Question about "alternitive" therapy
« Reply #73 on: Dec 10th, 2004, 4:54pm »
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Whoa, Mia - of COURSE I'm pro-alternative - when have I ever said that I wasn't?  Mike was med-free for 20 years before we found this site and I still think that the preventatives he started in his last two cycles prolonged things (as did the imitrex). I hate all the chemical meds and Mike has found NOTHING that works as a preventative for him, so we are stuck with oxygen as an abortive.  What is so hard to understand about that?   To say I'm anti-alternative is just hogwash.  I wrote the page for DJ about non-med remedies because I've spent YEARS researching what we could do to battle Mike's pain so that he doesn't have to get a prescription to do so.  I also wrote the page for DJ about Doc Jerry's water treatment.  It worked a couple of times for Mike because of all the ALTERNATIVE and non-chemical weapons we used.  It stopped working for him once he added chemicals into the mix.
 
I have NEVER told anyone not to try the shrooms.  Maybe you need to re-read MY post again, Mia.  You're right about feelings getting hurt here.  I was responding to exactly that.
 
Lastly, if I were "anti-alternative" as you say, I WOULD exercise that delete key power, trust me.  You'll note that I haven't, have I.  Your post on our Canadian board is still there and will remain there.  I'm very happy that you've found the answer for your husband's pain. I geniunely am, Mia - it's impossible to hear tone of voice on an internet message board but please know that this IS said with all sincerity, ok? We ARE trying to stop the same pain here.  Please respect the fact that I haven't found the answer for my husband's pain yet.  Why is that so hard to accept?
 
edited to add: one more thing, if our Family Services Team got a nickle for every supporter we've counselled against leaving their sufferer, we'd be wintering in Maui. (But that's all done behind the scenes here and we don't usually talk about it out "loud" like this, out of respect for privacy.)  So yeah, I think these websites HAVE saved some relationships.  I'm not disputing that ending a cluster cycle also is a day/night difference and I'm genuinely happy for those that have been blessed that way.  It's not just one thing that helps clusters though, Mia, it's a network of things.  THAT's the point I'm trying to make.
« Last Edit: Dec 10th, 2004, 5:30pm by Margi » IP Logged

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Re: Question about "alternitive" therapy
« Reply #74 on: Dec 10th, 2004, 5:02pm »
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on Dec 10th, 2004, 4:40pm, miapet wrote:
Let someone be pro-alternative, and they are 'steamrolling' but let someone be anti-alternative, or negative about it, and they are doing a freaking public service.

 
I don't see where it is befitting to refer to Margi's comments as "anti-alternative" or hence "against the alternative" or being "negative", therefore, "denial of or refusing of consent to" it's efficacy, as being a perceived view of what Margie has been saying about the alternative.  
 
 
 
Kevin M
« Last Edit: Dec 10th, 2004, 10:14pm by Kevin_M » IP Logged
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