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Bryan
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Thanks a lot shocked! Can I email the papers to myself after getting access to them from a computer at the public library?

Sorry, I donÂ’t know. IÂ’d say give it a try.

The service IÂ’ve had locally involves filling out a request slip and arranging notification for collection or postal delivery. There is a small charge. It usually takes a few days, sometimes more.

Incidentally for those interested -

Chapel of Sacred Mirrors has an event celebrating “Bicycle Day” (April 19th/tomorrow) in San Francisco –

https://secure.cosm.org/np/clients/cosm/event.jsp?event=373

shocked

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I'm going to the Chicago Convention and get baptized in my new Religion!!

At the Portland conference an impromptu discussion arose around all of the above mentioned issues as one of our guest speakers addressed the confluence of options we have as a group given the fact efficacy lies within a Schedule I drug. 

We discussed Sansert,

http://en.wikipedia.org/wiki/Methysergide

Related compounds

Its molecular structure is closely related to that of LSD.

Like LSD, methysergide also produces psychedelic and hallucinogenic effects.[9]

About 4 mg is equal to 25mcg of LSD.[9]

and the fact that it HAD made it into our pharmacology system (FDA approved, clinical trials, etc.) even though it's closely related to LSD.  Sansert production has been removed (tumor-causing in some folks) from the US, but is still produced by Sandoz Pharmaceuticals in Canada.

I myself had no idea (in the 90's) that what was being prescribed to me (and working very well!) was so closely related to LSD.  I didn't care!  It worked.  It was prescribed to me by my neurologist and it was completely legal. So for me, within the confluence of options as to where to put my energies as a soldier in this war, may not lie within the "education" to the world on this subject.  It doesn't seem to matter (quietly behind the scenes within the process of clinical trials, etc.).  Scientist's and researchers already understand this to be true.  ADHD meds, etc. 

What is disturbing to me (and possibly the most exciting opportunity when viewed as the "other side of the coin") Is how very little our medical community knows about this disorder.  I asked my Neuro how many hours he spent on CH while at the Mayo Clinic getting his doctorate....his answer 6 hours give or take.  6 hours, really???!!!! 

I decided to take the approach Hipshot mentions....

I have told my doctors. We all need to tell everyone that will listen, and then repeat as necessary Wink

As my own personal crusade with a bit of "Chicken Soup for the Soul" integrated into my approach "That throwing one starfish back into the ocean DID matter.  It mattered to that particular starfish".  As a group our cohesiveness is challenged by the following;

1.  Lack of Medical community awareness. (Correct diagnosis in a timely manner)

2.  Inability to treat effectively even if correctly diagnosed.

 

3.  Inability to admit #2 by our medical providers.

4.  PTSD in sufferers who quietly need to disassociate once the episode is over.  (New meaning to "Don't ask, don't tell")

The only reason I like the recent development of the ONSi or Deep Brain Stimulation procedures is it has the medical community discussing Cluster Headaches.  My career background lies in Marketing and we believe even bad advertising is good! 

I have shared "our" disorder with my dentist, my 02 supplier, my numerous neuros by printing trusted sources most current papers on the subject. I feel as tho I've just thrown "A starfish" back into the ocean, but truthfully I long for the day when the medical community views the 3 million sufferers (worldwide) as worth more than 6 hours of study. 

Cluster Headache Conventions are (IMHO) an excellent way of realizing the desired outcome of the medical community taking notice and being inspired to do more research.  But for fun, in the meantime, can we do our own version of a "Flashmob" distinct to our disorder????  Maybe we all scream at noon (while on our bicycles) in front of our community libraries wearing t-shirts with the Hippocratic oath printed on them!  LOL

All kidding aside, group gatherings are newsworthy!

Happy Bicycle Day everyone!

 

 

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PTSD in sufferers who quietly need to disassociate once the episode is over.  (New meaning to "Don't ask, don't tell")

Oh I like that post. Man do I like that post. Very well put.

Thanks

the bb

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yes....

I think I read a discussion about disassociation on here awhile back

I dont know what to say about that other than..... can ya blame them? I cant

Im glad I found this board and the other one (even though I cannot bust, sorry have to keep saying it....)  but at the same time I wish I never had to... I wish we all never had to.

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