Leaderboard

I'm honored to have the opportunity to share my knowledge and experience during 2 "grow demos" as part of this years conference agenda! I've been working on a PDF file documenting all of the Teks and processes that I'll be presenting for several months now and will be putting the finishing touches on it this next week! I've done it all on my Samsung Note and am too technically challenged to figure out how to transfer it to my laptop in PDF format....but our conference chairwoman has assured me that she'll "git r done" for me when I get to Dallas the day before the conference begins. All that to say this.....if you're planning to attend the conference and want to get the PDF, be sure to bring a thumb drive with you......the doc contains a lot of pics and is extremely large so I feel like that will be the easiest, fastest way to distribute it! See ya'll soon!! Dallas Denny

G'mornin Jack! Thank you so much for your interest and desire to be of assistance to the clusterhead community! Glad to see that you're in contact with our fearless leader and my personal hero! I had the pleasure of meeting and visiting with Doc Halpern at our annual patient conference in Portland in 2010! The thing that struck me most during those conversations was his compassion and desire to help all cluster headache patients....but he said he was driven most by the thought of sufferers in developing countries who had limited access to health care and medicine, no access to the internet.....folks who were destined to live their lives in agony with no chance of relief! As a man in his late 30's and early 40's, I lived that life for 7 years....reduced to rolling around on the floor at times, crying like a baby, begging my wife to blow my head off, enduring the exquisite pain that is clusters for an hour or more with each attack, and experiencing 4 or 5 individual attacks in a 24 hour time period!! Not a pretty picture and I'm so grateful that I found clusterbusters and alt meds......clusters now are more like an annoying inconvenience for me....and, because I have this affliction, I've been blessed to meet and become friends with some of the kindest, most compassionate and caring folks on this planet!! As to the efficacy of the CGRP meds like Emgality and Aimovig.....Eli Lilly has been a conference sponsor for several years so we've had a front row seat throughout the development and trials of Emgality......from what I've observed thus far in the online clusterhead support communities it is much like most other pharma meds for ch....works extremely well for some and poorly or not at all for others......but, it's progress and we'll take all of that we can get! Onward!! Dallas Denny

@BKP Exactly why I never use the term "headache" outside the confines of these online support forums or in the company of another clusterhead! I have a neurological disorder called Trigeminal autonomic cephalalgia which causes extremely painful head and facial pain. And, I also use the brain freeze analogy when describing the pain to a non clusterhead! DD

I'm going to start using that too. Trigeminal autonomic cephalalgia.....if I can remember all of that in the moment, lol.

Yes, unfortunately I did Jerry! TBH, my take from the whole deal was it was more about "bruised egos" than anything else! Having met him, I was really quite fond of John and have the utmost respect for doc Sewell so I didn't take sides but was incredibly sorry to see dedicated cluster advocates at such odds with one another! Dallas Denny

@BKP I just recieved a T shirt that I ordered from Amazon for the conference next month....sez "Yeah, sex is cool but have you ever felt the Beast leaving after a bad attack?" DD

Bob is a hero to many of us. And everyone who keeps it together while coping with CH is a hero to me, too. There's no reason for me to be chiming in here, and absolutely no need for you to respond. I had a strong psychic investment in this (my daughter has CH) back then, and a financial investment in Entheogen (in the form of donations) that was not insignificant for me. It's my understanding -- which could well be wrong in many places -- that there are two patents at issue. One is the patent for BOL-148 (2-bromo-LSD) itself, and one is the patent for using 2-bromo to treat CH. I know that John Halpern and Torsten Passie patented the latter around 2010, though I think maybe the patent holders are the institutions where they worked, Halpern at MacLean Hospital and Passie at a German hospital. I think Harvard holds the BOL-148 patent because Albert Hoffman invented it there in the 1940s (but I know the patent for plain LSD was "assigned" to Sandoz). I have attached a little booklet that ClusterBusters put together a few years back. Living with CH - 8.5x11 - 9-15-14.docx

CH is an odd beast. Any area in that quadrant of your head can be subject to pain as the Trigeminal Nerve serves as the major nerve for that side of your head and face. So, a lot of territory to hit. Just a bit to keep in mind. You can have low level Ch's or major ones. You will swear that a particular tooth is killing you. It gets removed, and the pain remains. You can get an ear ache, sinus pain, jaw pain, and on and on. That is why so many have had teeth pulled and sinuses reamed out surgically. So, the pain can be very different at different times. I had a cycle once where every hair follicle in that quadrant hurt constantly. Shampooing was a real bear for about 5 months. Most experience the worst pain at the back of the eye. Others get it in the temple. For me, it is almost always the temple. It feels like my head is being squeezed in a vice while a railroad spike that is red hot is pushed into my head through my temple. I do think that for many it is constant pain, not pounding or throbbing. Personally I started out Chronic, but with low level pain. Then I got a long reprieve. They returned episodic and blew the top off the Kip scale. A cycle will begin with one hit per night and quickly, a few weeks at most, ramp up to four every night. That takes care of the whole night. They last 2.25 hours untreated and there is a 15 minute break between hits. I sleep from 6am to 8am. After about 6 or 7 months I am not a very nice person. Not mean, just no laughter left. So, I tell off traffic and such. And avoid people when I can. CB is the reason I still can laugh and live. There are ways to manage it so you are a real person again. ATB