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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> National Headache Foundation Research Summit
        
(Message started by: Pinkfloyd on Feb 7th, 2006, 12:55am)
Title: National Headache Foundation Research Summit
Post by Pinkfloyd on Feb 7th, 2006, 12:55am
Dr. Sewell's abstract entitled, The Effects Of Psilocybin And Lsd On Cluster Headache: A Series Of 53 Cases, was selected for an oral presentation at the National Headache Foundation's 3rd Annual Headache Research Summit being held on Wednesday, February 15 and Thursday, February 16 from noon until 4 PM running concurrently with the postgraduate course, The Practicing Physician's Approach  to the Difficult Headache
Patient in Rancho Mirage, CA.

I will be attending the 4 day conference (the research summit is only 2 days of the 4 day conference) and will be joined by Dr. Douglas Wright of O.U.C.H. Canada (and ch.com fame)
Although the details are yet to be finalized, we will most likely be joining Dr. Sewell during the presentation and panel discussion.

Hundreds of headache specialists are about to be formally introduced and/or updated on the effects of psychedelics upon cluster headaches.

If your doctors don't know about it yet, they most likely will, come next week. ;;D

For more details on the conference, see:
http://www.dhc-fdn.org/eventfiles/DHC-FDNFeb06.pdf

BobW
http://www.clusterbusters.com/necklace.htm
Title: Re: National Headache Foundation Research Summit
Post by MJ on Feb 7th, 2006, 1:24am

Great news. Enjoy the sunshine too.

MJ
Title: Re: National Headache Foundation Research Summit
Post by sandie99 on Feb 7th, 2006, 3:22am
Great news! :)

Sanna
Title: Re: National Headache Foundation Research Summit
Post by maffumatt on Feb 7th, 2006, 4:56am
alright!
Title: Re: National Headache Foundation Research Summit
Post by Bob P on Feb 7th, 2006, 7:33am
Cool deal.  Tell Doug I said hi.

Would it be possible for Doc Sewell to share his paper with us?
Title: Re: National Headache Foundation Research Summit
Post by Pinkfloyd on Feb 7th, 2006, 9:24am

on 02/07/06 at 07:33:41, Bob P wrote:
Would it be possible for Doc Sewell to share his paper with us?


I'll check with Dr. Sewell.
My guess is that he'll want to wait until the paper is published, which should be very soon.

Bobw
Title: Re: National Headache Foundation Research Summit
Post by seasonalboomer on Feb 7th, 2006, 9:28am
if Dr. Sewell keeps it up he may replace Goadsby as the patron saint of CH.
Title: Re: National Headache Foundation Research Summit
Post by vig on Feb 7th, 2006, 9:18pm

Quote:
... the patron saint of CH.


he already is....

now we have several...
;;D

great work BobW!



(Ya snooze, ya lose, Goadsby!)
[smiley=laugh.gif]
Title: Re: National Headache Foundation Research Summit
Post by SteveY on Feb 8th, 2006, 7:53am
Re Goadsby.

He is infact meeting Dr Sewell today.

The more the merrier, I don't care how many saints we have.

Steve
Title: Re: National Headache Foundation Research Summit
Post by Dragnlance on Feb 8th, 2006, 11:36am
Has anyone nominated DJ for sainthood? I know after finding this place, I am thinking of him that way
Title: Re: National Headache Foundation Research Summit
Post by nani on Feb 8th, 2006, 11:46am
Thanks to Andrew, Bob and Doug.  :-*
Title: Re: National Headache Foundation Research Summit
Post by Margi on Feb 8th, 2006, 12:16pm
Bob, we're sending Doug with strict instructions to take good notes and lots of pictures.  Please remind him.  Oh and don't let him lollygag by the pool too much, ok?  He's very much looking forward to the balmy weather because he's pretty cold and waterlogged, coming from Nanaimo - they've had a helluva wet winter so far!

Seriously, Bob, Doug and Doc Sewell - thanks so much for helping to putting cluster on the map!  
Title: Re: National Headache Foundation Research Summit
Post by Linda_Howell on Feb 8th, 2006, 12:35pm



This is so friggin AWESOME !!!!  

DJ, I'm certain, would not want to be called a saint, but would all of this have ever happened the way it has,  without him starting ch.com?  I think not.  


Linda
Title: Re: National Headache Foundation Research Summit
Post by Pinkfloyd on Feb 8th, 2006, 5:33pm

on 02/08/06 at 12:16:51, Margi wrote:
 Oh and don't let him lollygag by the pool too much, ok?


All unauthorized lollygagging will captured on film. ;-)

One of the points I hope we can stress upon them is, with all the research being done by so many of the cluster patients themselves, it should be obvious that not enough research is being done by the medical community as a whole.

BobW
Thanks to everyone that has helped us get this far. We've only just begun.
Title: Re: National Headache Foundation Research Summit
Post by LeLimey on Feb 8th, 2006, 5:39pm
You're making history there Bob, its exciting!
I can't wait to hear all about it so take copious notes (in between lollygagging naturally!)
Title: Re: National Headache Foundation Research Summit
Post by Jonny on Feb 8th, 2006, 5:55pm

on 02/08/06 at 17:33:57, Pinkfloyd wrote:
One of the points I hope we can stress upon them is, with all the research being done by so many of the cluster patients themselves, it should be obvious that not enough research is being done by the medical community as a whole.



[smiley=bow.gif]  I have never ever posted that, so you better enjoy it, Bob ;;D

Folks like Bob Johnson, Flo, BobP, YOU and many more have got us this far. We are all Ch'ers but some are better researchers than others, Me?, ill stick with keeping the snakeoil out   ;)

DJ, without you we would still be in the fucking stoneage, Thank you, Brother!!!
Title: Re: National Headache Foundation Research Summit
Post by SteveY on Feb 8th, 2006, 7:02pm
Ditto
Title: Re: National Headache Foundation Research Summit
Post by Pinkfloyd on Feb 8th, 2006, 7:22pm

on 02/08/06 at 17:55:30, Jonny wrote:
[smiley=bow.gif]  I have never ever posted that, so you better enjoy it, Bob ;;D


Thanks Jonny, I do appreciate it.
I think the strides we've made are a testiment to the closeness of the entire cluster community, and everyone has had a hand in this.

Bobw
Title: Re: National Headache Foundation Research Summit
Post by Lizzie2 on Feb 8th, 2006, 11:16pm
Bob,

So very excited for all of you. :)  I can't wait to hear all about it!  Never have been to an NHF meeting although I get stuff in the mail from them all the time.  I don't have enough $$ t o fly around the world for all this shtuff.  ;)

Best of luck and ENJOY every moment!!!

Carrie :)
Title: break a leg
Post by dennisoc on Feb 9th, 2006, 12:46am
we who suffer cluster pain salute you.

we who have children at risk of clusters send you off with all our hopes.

walk in the sunshine
den
Title: Re: National Headache Foundation Research Summit
Post by Pinkfloyd on Feb 9th, 2006, 2:10am
Break a leg??

It would be my luck to break a leg and be in a room with 350 "headache" doctors.  [smiley=laugh.gif]

Thanks Den, and everyone

Bobw
Title: Re: National Headache Foundation Research Summit
Post by Peppermint on Feb 9th, 2006, 10:22am
Bob, I have to tell you, you really have come a looooong way BABY!!

This is very exciting news, from all the effort  and stages you've had to go through, it really is a promising step towards possible relief, a possible cure -

Good luck to you, Dr. Doug Wright and Dr. Sewell, here's praying each stride you make will take you further than you ever dreamed!

Knock them off their keister's,
Pep  [smiley=thumbsup.gif]
Title: Re: National Headache Foundation Research Summit
Post by L-E-E on Feb 10th, 2006, 12:33am
Way to go Bob, I hope all these sceptical Doctors get it.


Lee
Title: Re: National Headache Foundation Research Summit
Post by carriefu on Feb 10th, 2006, 1:55am
thank G-D for those still looking for a cure...........
Title: Re: National Headache Foundation Research Summit
Post by pattik on Feb 10th, 2006, 10:25am
Wishing all of you attending the conference great success in spreading the word...and don't forget to enjoy the beautiful surroundings while you're at it. ;)

Patti
Title: Re: National Headache Foundation Research Summit
Post by BlueMeanie on Feb 10th, 2006, 7:36pm
FUCKENEH.... Thanks to all who helped out on this. Is OUCH U.S. going to be there ?
Title: Re: National Headache Foundation Research Summit
Post by nani on Feb 10th, 2006, 9:20pm

on 02/10/06 at 19:36:37, BlueMeanie wrote:
Is OUCH U.S. going to be there ?


Dr Sewell is on the Advocacy committee at OUCH-US.
Title: Re: National Headache Foundation Research Summit
Post by Pinkfloyd on Feb 10th, 2006, 9:43pm

on 02/10/06 at 21:20:44, nani wrote:
Dr Sewell is on the Advocacy committee at OUCH-US.


This might be the quickest way to let OUCH US know, since I'm not sure who to write to specifically, and its getting close. I'd be happy to pass out some OUCH brochures etc. Not even sure if you have them, but if you (OUCH US) do.....best bet would be to send them out to me at the Marriott where the convention is being held. Just let me know if I should look for anything. Maybe I could put them out at one of the registration tables....next to the Clusterbuster brochures ;-)

Bobw
Title: Re: National Headache Foundation Research Summit
Post by StressFree on Feb 22nd, 2006, 7:24pm
-BUMP-

How did things go at the conference? It is always encouraging and exciting to hear of serious studies going on, and information getting out regarding our relatively rare condition. Thanks for all of your efforts BobW and the others who volunteer much of their time for OUCH and the other organizations. God's Blessings for you and yours, Rich
Title: Re: National Headache Foundation Research Summit
Post by Pinkfloyd on Feb 23rd, 2006, 12:27am
[quote author=StressFree link=board=meds;num=1139291723;start=25#28 date=02/22/06 at 19:24:36
How did things go at the conference?[/quote]

Thanks for asking Rich,
Still gathering info but can start with the following:

Those attending from Clusterbusters/OUCH[s] were Dr. Andrew Sewell, Dr. Doug Wright, Marsha Weil and myself.

Dr. Sewell made his presentation on thursday afternoon.
I have asked Andrew if I can post the summary of his report that was in the syllabus that was handed out to all the attendees. As soon as I have an answer, I will either post that or post a summary of his summary. Portions of it are what will be in the peer-reviewed article when that is published, which will hopefully be soon, and I'm not sure about all the "rules" involved.
He is currently attending another conference and I will report on that also, soon.

I do believe that the presentation was well received as there was more than the smattering of applause that some presentations seemed to garner. I believe the applause after my comments were for me not fainting during my comments. The room was full of many of the names you have all seen from time to time on many of the research abstracts we read.

Andrew went over his allotted time (he made sure he got his points across and hey...we gotta lotta points!!!) The people on the panel, who usually asked questions of the speakers, didn't because of time limits. Doug and myself stepped up to make comments/ask questions anyway to drive home some points.

One of the panelists, Dr. Lisa Mannix, actually came over for a discussion before his presentation, to ask some questions. I asked if she'd seen the website and she said she had....as it was pointed out to her by one of her patients, (anyone here?) prior to the conference. She seemed quite interested in "how do you people GET this stuff???" which was explained very well by Doug ;-)

One doctor asked me about the usual "feel" or level of hallucinatory effects involved. When I explained it was similar to a two-beer buzz for me, he said "now THAT is something I can relate to" ;-)

Marsha Weil was very helpful in our discussions and to help support the male contingent. Although we were a foursome, we never did play any golf. The conference meetings and presentations ran all week and ran from breakfast meetings at 6:30am until about 4:30pm.

Thanks to Doug and Marsha both for making our presentation at the conference a success.

Continued:
Title: Re: National Headache Foundation Research Summit
Post by Pinkfloyd on Feb 23rd, 2006, 12:30am
Continued:

On friday and saturday after our presentation, I continued to mingle and discuss our research with all that were interested. We were also able to put our brochures out on the registration table and I had to add more brochures on both friday and saturday, as they seemed to be rather popular.

I can't reveal any details yet, as I still don't have a lot of details, and those that I do, can't yet be revealed but....
I spoke with one doctor/researcher on Saturday and we discussed his desire to begin more scientific research on psilocybin and clusters. He told me that he had already begun "floating" the idea around the conference as far as not only more research, but the specific research he has in mind, and that he has a very good idea about where he can get research dollars. He actually said that it was time for someone in the headache community to begin compiling scientific research that will support our work. I couldn't help but agree ;-)
He promised to follow up when he got back from the conference.

As to the conference itself, there was very little on cluster headaches. 90% was on treating migraines and chronic daily headaches.
Much of the research going on was being funded by the large pharmaceutical companies, as we know. With the patents running out on imitrex, its obvious that glaxo is doing what they can to save their market share. They are researching a new imitrex tablet that is coated with naproxen. It seems that imitrex, when taken along with naproxen, is more effective than just imitrex. So you can expect to see a coated imitrex tablet in the future. It was asked a couple times why that is any better than just telling patients to take an Advil along with the imitrex tablet, there was more than a little stuttering and searching for a good answer. I'm sure they'll come up with one before it hits the tv ads.

There was one presentation on using Civamide nasal solution (red pepper- capsaicin) on episodic clusters. It didn't seem to cut down on the numbers of attacks or the severity but did show some success in making the attacks shorter, in this study.

There was also a report on a new AMPA/GluR5 antagonist being worked on by Eli Lilly that looks very good...for migraines. After reading some of floridian's work on ch.com about clusters/AMPA sites and Glutamate receptors, I have a feeling it will also be at least somewhat effective for clusters. Hopefully it won't have the problems that sumatriptan has for clusters.

Although the auditorium was never filled, I was impressed that the room always seemed to have a good attendance and the numbers didn't fall as the week went on. Even on Saturday when the event was ending with a half day, it seemed that just about everyone was still attending. The doctors there were interested in learning all they could about treating their headache patients.

I will continue to post information as I go along.

I was rather shocked to hear (maybe its not news to others, but I sure didn't know this) that verapamil, can cause/does cause men to become infertile. It doesn't cut down on the sperm count or make them immobile, so you can't tell under a microscope, but the little swimmers are no longer fertile...They also said that this was completely reversible but that it takes about 3 months for this to reverse. Verapamil is supposedly being studied now as a male contraceptive. (one female doctor said..."it's about time for one") Upon hearing this, I figured out that since I hadn't been put on verapamil until all my kids were born, this is probably why I have 4 kids and not 8.  

Thanks very much to everyone that donated to the trip and future Clusterbuster activities.

Also, thank very much to everyone that has contributed to Clusterbusters in so many ways since we began. We have come a long way and have already accomplished so much. It was a very emotional moment for me as Andrew began his presentation. There have been no small contributions as each one is a building block to the future and keeps us all moving in the right direction. Thank you all very much.

Bobw
Title: Re: National Headache Foundation Research Summit
Post by Beastfodder on Feb 23rd, 2006, 6:52am
Well done to all involved it's great news.

Major steps forward in a very good direction.  Finally the medical profession at large is learning what so many of us have had to learn the hard way.

Can't wait to read all about this on OUCH UK.

Don't laugh - at the moment some rare clarity is decending on the site where posts about alternative treatments aren't being tampered with or removed. ::)
Title: Re: National Headache Foundation Research Summit
Post by thebbz on Feb 23rd, 2006, 11:24pm
This is good news indeed. Thanks to CB,and all. Now where do I get my shroom card? lol
[smiley=bow.gif]
You guys rock [smiley=headbanger.gif]
Thank you over and over.
jb
Title: Re: National Headache Foundation Research Summit
Post by Pinkfloyd on Feb 24th, 2006, 12:37am

on 02/23/06 at 23:24:37, thebbz wrote:
Now where do I get my shroom card? lol
jb


Mushroom Club Member Official Decoder/Amulet (http://www.clusterbusters.com/necklace.htm)

:-X shhhhhhh!!
Title: Re: National Headache Foundation Research Summit
Post by Mr. Happy on Feb 24th, 2006, 2:41am
Be forwarned. The string holding the necklace is only good for a year or so.....body fluids weaken it, then it breaks if you go and try adjusting it. Had to opt for the beeswax impregnated twine as a backup. Shit.

Go for the Extended Warrenty....(only $99.95 (http://www.clusterbusters.com/necklace.htm))
RJ
Title: Re: National Headache Foundation Research Summit
Post by maffumatt on Feb 24th, 2006, 6:55am
Good job guys!
Title: Re: National Headache Foundation Research Summit
Post by kcopelin on Feb 24th, 2006, 3:46pm
Light will always overcome darkness! Yeah!!! Thank you each and everyone who attended, who experimented, who supported and who care!  
kathy
Title: Re: National Headache Foundation Research Summit
Post by MJ on Feb 24th, 2006, 9:57pm
Sounds like some success Pink.

Looking forward to reading the whole presentation sometime, somewhere.

I can understand the emotional thing, all this time and getting even greater recognition beyond the world wide attention the web site has created.
When you believe, things can happen and you all proved that so far.

Thanks
Title: Re: National Headache Foundation Research Summit
Post by Pinkfloyd on Mar 1st, 2006, 12:43am
http://i23.photobucket.com/albums/b392/psiloscribe/NHF_Syllabus_cover1.jpg

http://i23.photobucket.com/albums/b392/psiloscribe/NHF_Syllabus1.jpg
Title: Re: National Headache Foundation Research Summit
Post by cluster on May 12th, 2006, 4:44am
 


Quote:
  The Effects of Psilocybin and LSD on Cluster Headache: A Series of 53 Cases

(Presentation at the US National Headache Foundation's 3rd Annual Headache Research Summit, Febr. 2006)

R. Andrew Sewell, MD; John H. Halpern, MD


Objective: To describe the use of psilocybin and lysergic acid diethylamide (LSD) for treatment of cluster headache.

Design: Patients were questioned about their use of psilocybin and LSD to treat their cluster headaches. Of 383 patients identified, 53 consented to interviews and provided medical records, thus qualifying for our primary analysis. An additional 147 respondents provided quantifiable information on use of psilocybin to terminate cluster periods, but failed to provide medical records or declined to be contacted; these individuals were included in a secondary analysis only.

Patient Selection: We included all respondents who 1) reported cluster headaches, 2) had attempted to treat their headaches with either psilocybin or LSD, 3) agreed to be contacted for evaluation by telephone or e-mail, and 4) allowed us to obtain copies of their medical records.

Main Outcome Measures: For abortive treatment, a subjective rating of "effective" - causing termination of a cluster attack in less than 20 minutes - or "ineffective". For prophylactic treatment, a subjective report of "effective" – causing total remission of the cluster period, "partially effective" – causing diminishment of cluster attack frequency or intensity, or "ineffective" – no change noted. For remission extension, subjective report of "effective" – a delayed or missed cluster period, or "ineffective" – a subsequent cluster period at the expected time.

Results: Of the 53 participants in the primary analysis, 52 had used psilocybin and nine had used LSD to treat their cluster headaches. Twenty-two (85%) of 26 psilocybin users reported that psilocybin had aborted attacks; 25 (52%) of 48 psilocybin users and seven (88%) of 8 LSD users reported termination of at least one cluster period; and 18 (95%) of 19 psilocybin users and four (80%) of five LSD users reported extension of their remission period. Twenty-two (42%) psilocybin users and two (22%) LSD users experienced therapeutic effects with sub-hallucinogenic doses. In the secondary analysis, 76 (52%) of the 147 respondents reported that psilocybin terminated at least one cluster period.

Conclusions: Our observations suggest that psilocybin and LSD may be effective in treating cluster attacks, possibly by a mechanism that is unrelated to their hallucinogenic properties. This report should not be misinterpreted as an endorsement of the use of illegal substances for self-treatment of cluster headache.


BobW,

great work!

I can read the text now, but I struggle to understand the results:



Quote:
Of the 53 participants in the primary analysis, 52 had used psilocybin and nine had used LSD to treat their cluster headaches. Twenty-two (85%) of 26 psilocybin users reported that psilocybin had aborted attacks; 25 (52%) of 48 psilocybin users and seven (88%) of 8 LSD users reported termination of at least one cluster period; and 18 (95%) of 19 psilocybin users and four (80%) of five LSD users reported extension of their remission period.


If it is a total of 52 psilo users, why is the result reported e.g. 22 of 26?

Regards and painfree times!
Friedrich


www.ck-wissen.de
(German language CH website)
Title: Re: National Headache Foundation Research Summit
Post by Pinkfloyd on May 12th, 2006, 9:45am
Hello Friedrich,
This number relates to an individual attack and not a cluster "cycle."
Only 26 of the 52 used psilocybin during an attack. Of these, the psilocybin aborted the attack. The remaining 4 people had their attack run it's course. I believe this 85% effective rate for aborting clusters, beats Imitrex's number ;-)

Bobw
P.S. The "other" 26 could not report whether psilocybin would abort an attack since they took their dose between attacks.
Title: Re: National Headache Foundation Research Summit
Post by cluster on May 12th, 2006, 3:39pm
Hello Bob,

thank you very much for the answer.

http://www.utopolis-coburg.com/kino/archiv/2004/2_quar/w/wicky/07.jpg

I think I understand it now.


But, sorry ...

http://www.utopolis-coburg.com/kino/archiv/2004/2_quar/w/wicky/01.jpg

now I have the next question:


Quote:
I believe this 85% effective rate for aborting clusters, beats Imitrex's number ;-)


- This is unbelievable. Incredible. But true?

How do you take this Psilocybin? Eat it, sniff it, smoke it?

You mean Imitrex injections, don't you?

How can something you swallow(?) work better than injections?

Regards and painless times,
Friedrich

www.ck-wissen.de (german)
Title: Re: National Headache Foundation Research Summit
Post by Garys_Girl on May 13th, 2006, 2:19pm

on 05/12/06 at 15:39:56, cluster wrote:
- This is unbelievable. Incredible. But true?


Yes.  True.  


Quote:
How do you take this Psilocybin? Eat it, sniff it, smoke it?


Psilocybin can be eaten (eating dried mushrooms) or, I believe, it can be made into a tea for drinking; the mushrooms can be prepared in food; they can be powdered and encapsulated and thus taken in pill form.


Quote:
You mean Imitrex injections, don't you?
 Imitrex also comes as a pill and a nasal spray.  The difference is the amount of time it takes to have an effect.  


Quote:
How can something you swallow(?) work better than injections?


Something you swallow generally takes longer to work than something you inject.  However, my understanding is that as an abortive, mushrooms are placed under the tongue.  (Clusterbusters call it a "SPUT" - "Shroom placed under the tongue." )  I don't know how long it takes to abort.

I do know that I took psychedelics recreationally as a teen,  lo those many years ago, and that includes shrooms, LSD and mescalin.  I don't recall how long it took shrooms to work (we ate them).  I do know that the moment you put LSD under your tongue you could feel something immediately.  And people who had liquid LSD and were making paper tabs could get high just from absorbing it through the skin if they weren't careful in handling it.  

So although I do not have CH and hubby has not tried shrooms as either a preventative or an abortive, based on my experience as a teen, I believe that it is possible that a SPUT could work very quickly as an abortive.

Laurie
Title: Re: National Headache Foundation Research Summit
Post by Garys_Girl on May 13th, 2006, 2:23pm
Important to note:  Mushrooms, LSD or LSA (Seeds) taken to abort or prevent cluster headaches are taken in very small, sub-psychedlic doses.  This means that when taking any of these meds for cluster headaches, if proper dosage is administered, you do not experience either "trippy" or hallucinogenic side effects.

In fact, some do not even experience the "2 beer buzz," and at these small dosage leves are safe (far less toxic than most prescription drugs) with no side effects (other than the potential 2 beer buzz).  

Laurie
Title: Re: National Headache Foundation Research Summit
Post by Poli on May 13th, 2006, 2:39pm
Hello. First time I write here. Just to confirm with my own experience the clusterbusters treatment. I'm just drinking a tea once a month and it's now nearly 3 months I'm absolute pain free and 6 months without one single aspirin.
More information in  

www.clusterbusters.com

Saludos
Poli
Title: Re: National Headache Foundation Research Summit
Post by Garys_Girl on May 13th, 2006, 2:50pm
Apparently this is the experience of MOST people who try psyilocybin to prevent CH!

I'm so glad it's working for you!!!!!!!!!!!!!!

Laurie


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