Well put and hopefully heeded...

All advice here is assumed to be qualified as just that, advice. Nobody here is trying to take the place of a trained physician, and I'm pretty sure none of us are giving advice and claiming that it will work. Nobody who knows anything about cluster could ever make that kind of assertion.
If I feel a person may be in the dark about a certain type of treatment I tell them as it could be the thing that brings them the first relief they have had in months or years. Conversely, I am always scanning the forums for the different types of treatments people are taking, because I know that there may come a day when the system I am using now stops working and I need to start looking at alternatives.
I do agree that nobody here needs to be prescribing any sort of treatment for others, especially those who could be confused or desperate. However, people need to realize this is merely a resource, not a substitute for trained practitioner. You should run anything you read here by your doctor before you go out and start putting drugs into your body.

japanzaman wrote on Sep 29^th, 2012 at 10:56am:


Merely a resource and not a substitute for a trained practitioner?  Maybe for you, but without this website I would've been dead 100X times over!

If you are EXTREMELY lucky to have an educated doctor about CH's, then this is good advice.  Otherwise, I would personally recommend you sitting face to face with your doctor and making sure their ears are wide open and they listen to you, the patient, about what your CH needs are.  If they are not willing to listen to you, fire them and don;t walk away, RUN out of their office!

We CH'ers do not often meet doctors who know how to effectively treat us.  On the contrary, we often have to be the more educated of the two (doctor/patient) and must self advocate advising the doctor what treatment we as patients believe is best for controlling the beast.

My CH's started at age 11 and was mis-diagnosed my entire childhood, teenage and college years.  Then I self diagnosed, after 20 yrs of torture by the dragon, thanks to this website.  

Since then, every treatment I chose to use (abortive, transitional and preventive) have ALL been at MY suggestions based on info I have learned HERE at Ch.com.  Some cycles I have been under the guidance of medical professionals and other cycles I have provided my own treatment by any means necessary.

I have personally educated several neurologists and would gladly challenge ANY headache specialist how to effective treat a CH'er.  I honestly believe it would be a safe bet I would beat MOST doctors on this test of knowledge.  So for someone/anyone to suggest running your ideas of treatment past your doctor 1st for professionalism, I don't necessarily agree as I have a high disrespect of the medical community when it comes to CH's.

At the ClusterBuster conference last weekend, many of us CH'ers listened to a speech by a guy who could endure a KIP 8 and continue being the MC on a live radio show interview without stopping or using abortives.  While other CH'ers can not endure a KIP 2 without the need of an abortive. 

Pain is relevant to the individual as we all have our own individual tolerance and patience levels; and beliefs of how we must self advocate or choose to barely survive as a guinea pig mis-diagnosed with poor treatment recommendations by uneducated people who happen to possess an MD. Bottom Line is...."to each his own!"

-Gregg in Las Vegas