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        New Message Board Archives >> Medications, Treatments, Therapies 2004 >> ClusterBusters Survey Results: Effectiveness
        
(Message started by: Flash on Oct 4^th, 2004, 2:32pm)

Title: ClusterBusters Survey Results: Effectiveness
Post by Flash on Oct 4^th, 2004, 2:32pm

BobW AKA PinkFloyd just collated the survey forms and released the results to date. They make interesting reading!

We've agreed that I can post these here. The results are taken from our survey on the Erowid site:

http://www.erowid.org/plants/mushrooms/survey/mushrooms_survey_headaches.shtml

Thanks to all that took part. The complete report on results will be delivered to Dr.'s Halpern and Doblin Oct. 21st.

Here are the stats:

Total Records (that have undergone this treatment)= 56
Total Episodic Cluster Headache Respondents= 31
Total Chronic Cluster Headache Respondents= 19
Total Migraine Headache Respondents= 6

Success rates*
Episodic Clusters / Mushroom treatment= 27/27, 100%
Episodic Clusters / LSD treatment= 4/4, 100%
Chronic Clusters / Mushroom treatment= 10/16, 62.5% (17th respondent noted no final assessment to date)
Chronic Clusters / LSD treatment=1/2, 50%
Migraine headache / Mushroom treatment= 4/4, 100%
Migraine headache / LSD treatment= 2/2, 100%
All Headaches / All hallucinogens= 48/55, 87.3%

Average time of remission between treatments**
Episodic Clusters / Mushroom treatment= 28.96 weeks
Episodic Clusters / LSD treatment= 55 weeks***
Chronic Clusters / Mushroom treatment= 3.5 weeks
Chronic Clusters / LSD treatment= 4 weeks ****
Migraine headache / Mushroom treatment= 15.75 weeks
Migraine headache / LSD treatment= 30 weeks ****
All Headaches / All hallucinogens= 19.39 weeks

Number of treatments required to reach remission= 1.9 doses

Will continue to use treatment= 54/56, 96%

Percentage of people that experienced at least one adverse event (bad trip, even if minor)= 25/56, 45%

Notes:

1. Shortest period of time reported as headache free, following treatment was "weeks" (in excess of 7 days), less than that counted as a failure.

2. Longest period of time reported as headache free following treatment was 3 years.

* Success determined when treatment prevented future headaches for a period of a minimum of 7 days during which additional headaches would have normally occurred prior to the treatment.

** Reports of "months" or "weeks" used (2) as quantity for percentage equations.

*** Average of Remission period skewed by (1) 3 year remission. Shortest period reported was 1 month.

**** Two respondents only.

Title: Re: ClusterBusters Survey Results: Effectiveness
Post by Margi on Oct 4^th, 2004, 3:25pm

Flash, I hate to be the fly in the ointment here but I believe I took that survey (on my husband's behalf) and he's an episodic sufferer for whom the treatment failed. How can that represent 100% success rate, therefore?

Note: he was totally med free at time of dosing, did everything right, etc.

Did my survey results not make it through, maybe? I seem to remember having some problem filling out the questionnaire.

Please also note that I have nothing against the shroom therapy at all - and am certainly not trying to criticize the good work that clusterbusters does. Just wondering about the reported results, that's all.

Title: Re: ClusterBusters Survey Results: Effectiveness
Post by Bob P on Oct 4^th, 2004, 3:51pm

I thought I took it too. Maybe is was the old Beta version or the Quality of Life Part 1.

Just put me down as a failure.

Modify: OK just went and took it again.

Title: Re: ClusterBusters Survey Results: Effectiveness
Post by Pegase on Oct 4^th, 2004, 4:54pm

Well... these results are encouraging although It seems there's some data missing...

Good work :)

Pegase

Title: Re: ClusterBusters Survey Results: Effectiveness
Post by Margi on Oct 4^th, 2004, 5:03pm

on 10/04/04 at 15:51:40, Bob P wrote:

OK just went and took it again.

same here.

Sorry, Flash - I think I probably did get an error the last time I did this survey.

Title: Re: ClusterBusters Survey Results: Effectiveness
Post by Bob P on Oct 4^th, 2004, 6:37pm

on 10/04/04 at 17:03:46, Margi wrote:

same here.

Sorry, Flash - I think I probably did get an error the last time I did this survey.

Naw, you probably just did it wrong Margi.

Title: Re: ClusterBusters Survey Results: Effectiveness
Post by Jonny on Oct 4^th, 2004, 6:39pm

Women! ::)

Title: Re: ClusterBusters Survey Results: Effectiveness
Post by don on Oct 4^th, 2004, 6:49pm

Margi thought she had to be dosing to post the data.

Fear and loathing in Canada.

Title: Re: ClusterBusters Survey Results: Effectiveness
Post by Pinkfloyd on Oct 4^th, 2004, 6:51pm

on 10/04/04 at 17:03:46, Margi wrote:

Sorry, Flash - I think I probably did get an error the last time I did this survey.

If this is you Margi, then the one you just filled out is the first one you have completed for the erowid survey....
Headache1 -- Survey Response
Submitter Name: Mike
Date: 4 Oct 2004 14:3:19
View: http://www.erowid.org/plants/mushrooms/survey/survey_software/survey_admin.php?A=ShowResponsexxxx
IP: 207.54.125.xxx -- This IP has submitted 1 responses
--------------------

SubmitterName : Mike
Email : moxie_miss@xxxxx

BobP
If this is you, then this is the first survey you have filled out for the erowid survey....

Headache1 -- Survey Response
Submitter Name: Bob Pahlow
Date: 4 Oct 2004 12:58:41
View: http://www.erowid.org/plants/mushrooms/survey/survey_software/survey_admin.php?A=ShowResponsexxxx
IP: 129.65.46.xxx -- This IP has submitted 1 responses
--------------------

SubmitterName : Bob Pahlow
Email : bob@pahXXX

As you can see, this is the first response from either of your IP's.(the one today after the results were released)

Margi, I've looked and it doesn't appear that you completed this survey, even from a different IP.

I believe you both may be thinking of either the Quality of Life Survey or the other Clusterbuster Survey that asked for specific information from people that have tried the shrooms. The only people that completed the Erowid survey that are not included in the results are people that filled out the survey but still hadn't tried shrooms. They just wanted to check the box that said they would, if they were legal. So this report lists everyone that filled out the erowid survey that had tried the shroom treatment.

There are three different surveys all asking for different information. I do know that both Margi and BobP completed at least one of the other surveys. Your data will be included in the results for those which will be available soon. (Don't want you to to feel left out ;-)

The note in Flash's post "Total Records (that have undergone this treatment)= 56" may have been a bit misleading.
There are almost 200 people that have undergone this treatment. Only 56 of them responded to the Erowid survey.

I promise that if there had been any more failures than I noted I would have counted them. It looks "too good to be true" IMHO, but all I can report on is what I'm given.

One person here that may feel she's in the wrong section is Jayne. I don't know if she was episodic before trying shrooms but she listed herself as a chronic and therefore had to be listed in the chronic "failed" catagory. I can't move anyone about, even if I know a different history. Whatever is on the form..is on the form.
If I had my druthers I would have liked to have Jayne be in the Success line but,.......maybe some day.

No problem folks. Glad you both asked because with all the different surveys, it can be confusing.

PF
(edited to remove portion of erowid url for privacy purposes.)

Title: Re: ClusterBusters Survey Results: Effectiveness
Post by Margi on Oct 4^th, 2004, 10:18pm

Thanks, Bob, for the clarification. I know I have seen this survey before but I do remember getting an error the last time I tried to complete it - I think my computer locked up (my computer's fault, not the survey's - the computer I was using at the time came over on the Ark with Noah, I believe - which is scary because that could mean there are two of them! :o). I don't think I was able to get back in to try again so, completely my fault that Mike's results weren't there.

Keep up the great work over there, Bob! :)

Title: Re: ClusterBusters Survey Results: Effectiveness
Post by Pinkfloyd on Oct 4^th, 2004, 10:51pm

on 10/04/04 at 22:18:08, Margi wrote:

Thanks, Bob, for the clarification.

No problem Margi. I would have asked about it myself in your position.

If you'd like, feel free to post the results over on the OUCH Canada board.

Dr. Halpern will be wanting to speak to people that have tried this. If you or Mike would be willing to speak with him, please send me your phone number in a PM or email. I will be supplying him with a list of people to speak with. So, if you (or anyone else out there) would be willing to do so, let me know and I'll put you on the list. He will be choosing people from the list of those that have tried it and I'm sure he'd like to speak to some of those that did not have success.

He is working on the the initial manuscript now.

Being on the list does not mean you will get a call, it means you might get a call. :)

PF

Title: Re: ClusterBusters Survey Results: Effectiveness
Post by maria9 on Oct 4^th, 2004, 11:59pm

Here is the link for those of you who are interested in further research in this area and are willing to support it:

http://www.maps.org/research/

Thanks all,

Marsha

Title: Re: ClusterBusters Survey Results: Effectiveness
Post by Flash on Oct 5^th, 2004, 8:15am

This survey actually dates back into the mists of time and is pre-Clusterbusters. It was devised mainly by pinksharkmark, earth, and myself... there were others that input also but I can't recall who exactly... sorry.

Back then we knew a lot less than we do now, and this is reflected in the survey.

Initially the survey was operating in a test mode and did not record the results, it also coughed up an error. There was very little interest so we just left it in limbo for a couple of years. It wasn't until ClusterBusters took hold that we dusted it down and started collecting meaningful data. Both BobP and Margi responded back before the thing was working correctly. Actually they responded on the first day or so.

Having said that Margi, back then the treatment was allegedly working for Mike, so your response would likely have been different. It might be interesting for someone to trawl through the archives and review Mike's history, as I seem to recall several successful preventative doses over a long period of time before the big bad episode came along. One bad epsiode should not over shadow those previous reports. Unless you were exagerting? My memory is pretty sharp... as has been previously demonstrated.

Of course what ever someone decides to put on their form is what counts, regardless whether it's accurate or not.

***

What I was alluding to by "Total Records (that have undergone this treatment)= 56" is that we received a lot of responses from people that have NOT undergone the treatment. They only complete the form to say whether or not they'd take the treatment if it were legal.

What I'd like to see is all the results collated with the averages posted next to the original questions - that would be really interesting. I'd have a crack it this but with 2 businesses on the go, and working 70 hours a week...

Now that we have these results it would also be nice to to do a better survey form, with unique case numbers etc, that can track every dose in someones treatment programme.

Title: Re: ClusterBusters Survey Results: Effectiveness
Post by Margi on Oct 5^th, 2004, 10:31am

on 10/05/04 at 08:15:47, Flash wrote:

Having said that Margi, back then the treatment was allegedly working for Mike, so your response would likely have been different. It might be interesting for someone to trawl through the archives and review Mike's history, as I seem to recall several successful preventative doses over a long period of time before the big bad episode came along. One bad epsiode should not over shadow those previous reports. Unless you were exagerting? My memory is pretty sharp... as has been previously demonstrated.

Um, no - I'm not exaggerating. I, too, have a very good memory, Craig.

Initially, we think the treatment kept Mike in remission longer than ever before. Previous to dosing, he would normally go into cycle every fall. He dosed in August of that year and skipped that fall cycle. I do firmly believe that the treatment changed his pattern - I'm not disputing that. He dosed again in spring, just for insurance and did stay in remission until the following November. That next cycle started very slowly and he wasn't sure if he even was in cycle with very irregular hits through that month. We were unable to find any product until early December. I think THAT may be the ONLY thing that we may have done wrong, dosing too late.

However, saying "one bad episode" is the understatement of the century, Flash. Mike dosed 4 times in December. Completely med free, waiting the five days between doses, following Pinky's instructions to the letter. With each dosing he got progressively worse. Stronger and longer hits each time. After the fourth dose, he gave up and, in January - for the first time EVER - we got in to see a neuro. Again, for the first time EVER, Mike started a preventative (Verapamil) after he did a prednisone burst. The pred gave him a few days' break, but then it came back with a vengance. Verapamil was then mixed with lithium and the cycle finally petered out in late May. His longest cycle ever. I don't doubt that the traditional meds made his cycle last longer that year.

Mike has never been a guy who has liked the meds. As you know, he was a big fan of the water water water for a long while before he tried the shrooms. He used welders' oxygen and water as his defense plan once we found ch.com in 1998. Prior to that, we didn't know what he had and kept trying ineffective meds (antibiotics, usually ::)) and just basically rode out his cycles. But his cycles were never longer than 6 - 8 weeks when he was cluster med-free.

So did the shrooms help him? Yes, initially they did. Did they change his pattern? Yes, we think so. He went from 9 month remissions to 2 year remissions and that pattern seems to have stayed with him (knock on wood). Did they make him worse? Dunno. He definately had more intense pain the ~~second time he tried them~~ edited to say: the second cycle that hit him, and launched into his worst cycle ever - to the point he's nervous to play with that fire again. Or was it the meds that gave him that lengthy cycle? I tend to be suspicious of that, yes.

That, Flash, is accurate. Please don't insinuate that it is anything but, ok? I have absolutely nothing against the shroom treatment and know that it has and does help a lot of cluster sufferers. I am all for further research and field testing. But let's give a true picture of the failures as well, because sadly - there are some.

Bob, I'll send you my phone number in a PM and yes I will post a link to this thread over at OUCH Canada.

p.s. Flash, I've saved you a bit of footwork and gone through the archives myself. Following are the corrections to what I've said here (apparently my memory isn't all that precise. ::)) Mike dosed 3 times that December (not 4 as I thought) and his remission lasted 27 months, not two years as I've said here. At one point in the archives I said 3 year remission but I think it was wishful thinking on my part because later in the archives, I do clarify that it was, indeed, 27 months. At the time, though, that meant three missed cycles for Mike, thus the "three" reference, maybe? Call it Canadian math. Everything else is pretty much spot on though.

Title: Re: ClusterBusters Survey Results: Effectiveness
Post by Pinkfloyd on Oct 6^th, 2004, 12:34am

on 10/05/04 at 10:31:53, Margi wrote:

Bob, I'll send you my phone number in a PM and yes I will post a link to this thread over at OUCH Canada.

Thanks Margi,
So I guess you and BobP left a couple chads hanging the wrong way a couple of years ago.

Never fear, there is another survey I would very much like you (and anyone else that hasn't so far) to complete. Its for people that have tried the shroom treatment and asks for results. I know BobP completed it but it doesn't look like you ever did.
Here's your chance to be counted. This is a chad-less ballot
;-)

http://www.clusterbusters.com/phpsurveyor/index.php?sid=4

I will be finishing the compilations on this survey this weekend. It's been up for a long time and I need the data to take with me on the 21st. It will remain open and we will continue to update results as we go, but if you want to be in the first batch......you have until friday night.

Yes, there are three surveys, soon to be four. They can all be found at the Clusterbusters site.

PF

Title: Re: ClusterBusters Survey Results: Effectiveness
Post by Margi on Oct 6^th, 2004, 9:54am

Thank you Bob - I just submitted Mike's results for this survey. I didn't have a file number though, so I hope that's ok. It accepted the submission, so apparently it worked?

Title: Re: ClusterBusters Survey Results: Effectiveness
Post by Flash on Oct 6^th, 2004, 1:11pm

Margi - thanks for the clarification, and what you have stated is now in line with your reports as I remember them at that time.

Now the only issue that I have is how this jives with your completed survey form...

Mush_Tries : 6
Mush_Effectiveness : Perhaps Effective
WhatDurationImprovement : < 24 hours
HowManyTreatmentsToImprove : > 3

CommentsAboutImprovementWorsening : I had success once with psilocybin mushrooms and it seemed to keep me in remission longer. The second time I dosed, however, it made my cycle MUCH more intense and I ended up in the longest cycle I\'ve ever experienced (6 months)

CompareEffectiveness : hallucinogens much worse
StoppedWorking : yes
UsedSuccessfullyYears : 2
UsedSuccessfullyMonths : NoAnswer
UsedSuccessfullyTimes : 2

Title: Re: ClusterBusters Survey Results: Effectiveness
Post by Margi on Oct 6^th, 2004, 3:25pm

I'm sorry, Craig - I'm not sure I understand your question.

I've filled out two questionnaires now and the second one was much less user friendly to complete in regard to having one successful result and one failure (it really only asked questions that would relate to one attempt or 100% success - neither case was true for Mike.)

What are you seeing that's not jiving?

Title: Re: ClusterBusters Survey Results: Effectiveness
Post by Pinkfloyd on Oct 6^th, 2004, 7:14pm

on 10/06/04 at 09:54:59, Margi wrote:

Thank you Bob - I just submitted Mike's results for this survey. I didn't have a file number though, so I hope that's ok. It accepted the submission, so apparently it worked?

Thanks Margi.
Yes it worked and I have the results. I can add your case number to it. I'll get it from tommyd so I am sure of getting the correct number.
Let me give this some thought as to the difficulty in completing the survey. It may be that you should fill it out twice. Once for the successful treatment and one for the failure. Not sure though how that would effect the outcome totals and percentages. I'll let you know. I'm not sure the application will accept two responses from the same IP. Many don't just so people can't stuff the ballot box.
Adding one more report wouldn't be so we can add a success to the list. Its a matter of trying to look at the differences between the successful treatments and the unsuccessful ones so the researchers may be able to zero in on why this works and why it may not work.

This is why I have stated many times that getting the reports of any unsuccessful treatments is as important, if not more important, than reports of the successful ones. We certainly won't get to any answers without the entire story.

If I don't get back to you in a few days, please remind me ;-)

P.S. I'm sure Dr. Halpern would have no problem calling Canada ;-)

thanks again for the survey completion.
PF

Title: Re: ClusterBusters Survey Results: Effectiveness
Post by vig on Oct 6^th, 2004, 11:48pm

A good experiment still yields important results even with failures. There's always something to be learned.

Title: Re: ClusterBusters Survey Results: Effectiveness
Post by Flash on Oct 7^th, 2004, 11:57am

Here are the problems I have reconciling your response with reality:

on 10/05/04 at 10:31:53, Margi wrote:

He dosed in August of that year and skipped that fall cycle. I do firmly believe that the treatment changed his pattern - I'm not disputing that. He dosed again in spring, just for insurance and did stay in remission until the following November.

YOUR SURVEY RESPONSE...
HowManyTreatmentsToImprove : > 3

So in fact he improved with his first dose to the extent of a substantial remission. Yes 2 years later he also failed to achieve remssion after 3 doses, but in that instance the treatment was undertaken further into an established episode. Despite that your have chosen to report ONLY the failed attempt.

on 10/05/04 at 10:31:53, Margi wrote:

Mike dosed 3 times that December

YOUR SURVEY RESPONSE...
Mush_Tries : 6"

I make it 5. Once initially that achieved a remission. Once more for maintenance and the remission continued past that and ultimately lasted 27 months. Then the 3 doses that fialed to break an established episode.

on 10/05/04 at 10:31:53, Margi wrote:

So did the shrooms help him? Yes, initially they did. Did they change his pattern? Yes, we think so. He went from 9 month remissions to 2 year remissions and that pattern seems to have stayed with him (knock on wood).

on 10/05/04 at 10:31:53, Margi wrote:

Initially, we think the treatment kept Mike in remission longer than ever before. Previous to dosing, he would normally go into cycle every fall.

YOUR SURVEY RESPONSE...
Mush_Effectiveness : Perhaps Effective

Obviously you prefer to give coincidence the benefit of the doubt. Unfortunately coincidence is not a viable treatment.

on 10/05/04 at 10:31:53, Margi wrote:

his remission lasted 27 months. I do clarify that it was, indeed, 27 months.

YOUR SURVEY RESPONSE...
WhatDurationImprovement : < 24 hours

Now there's a sizeable discrepancy there isn't there???

UsedSuccessfullyYears : 2
UsedSuccessfullyMonths : NoAnswer

Hmm that's 3 months out isn't it.

on 10/05/04 at 10:31:53, Margi wrote:

At the time, though, that meant three missed cycles for Mike

YOUR SURVEY RESPONSE... CommentsAboutImprovementWorsening : I had success once with psilocybin mushrooms and it seemed to keep me in remission longer.

So he had success once? But in reality he skipped 3 episodes, and there was the small matter of a maintenance dose that could be construed as successful.

on 10/05/04 at 10:31:53, Margi wrote:

Again, for the first time EVER, Mike started a preventative (Verapamil) after he did a prednisone burst. The pred gave him a few days' break, but then it came back with a vengance. Verapamil was then mixed with lithium and the cycle finally petered out in late May. His longest cycle ever. I don't doubt that the traditional meds made his cycle last longer that year.

on 10/05/04 at 10:31:53, Margi wrote:

Prior to that, we didn't know what he had and kept trying ineffective meds (antibiotics, usually ) and just basically rode out his cycles. But his cycles were never longer than 6 - 8 weeks when he was cluster med-free.

YOUR SURVEY RESPONSE...
CompareEffectiveness : hallucinogens much worse"

So what meds produced anything superior to a 27month remission?

on 10/05/04 at 10:31:53, Margi wrote:

That next cycle started very slowly and he wasn't sure if he even was in cycle with very irregular hits through that month. We were unable to find any product until early December. I think THAT may be the ONLY thing that we may have done wrong, dosing too late.

YOUR SURVEY RESPONSE...
StoppedWorking : yes

So they worked twice and failed once although there were only 3 attempts that episode and those were during an established episoide... and from that you concluded that they stopped working. You sure you're not being a bit hasty? There were other questions relating to wanting/not wanting to use them anymore, those may have been more approriate under the circumstances.

Title: Re: ClusterBusters Survey Results: Effectiveness
Post by Margi on Oct 7^th, 2004, 1:32pm

Well, Craig - I'm glad you're getting a kick out of trying to discredit my responses to your survey. I refuse to get into a pissing match with you over this - so if you want to keep going, have at 'er, bud . I have to wonder if Mike had experienced success in aborting that second cycle and I'd made the same "hair splitting errors" if you'd even bother responding....

HEAR ME. We view Mike's trials as two separate times - not five, not six, not three, regardless of number of doses each "time".. Got that? The first time, the treatment worked to change Mike's remission pattern from a 9 month remission to a 27 month remission. The second time: they failed to abort a cycle for him. Yes, he is nervous to try them a third time, because of the disastrous results of his second attempt.

Flash, as you know, I was one of the first on the bandwagon here and, even though my husband is in the small minority of folks that the treatment has failed, I have not yet disembarked from that bandwagon. This treatment has helped a lot of clusterheads and continues to. This is why I question your motivation in your repeated attempts to criticize my "inconsistency" in survey responses. Bottom line is, there will be failures with any cluster treatment. Short of hypothalmus-ectomy, I have a hard time believing that ANYthing will have 100% success.