Posted by Daniel (196.2.44.152) on March 09, 2001 at 03:37:48:
Hi Rocky
I have been away for some time and have not followed your story here aside from that you punt a link between TN and Clusters
Myself, my history here seems similar to yours and my frustrations with some of these people, who in the absence of 'new things' can never say enough about how the pain is so bad they'd try anything. But when the chips are down 'new' is swear word on this board. In fact when I first joined I recall catching the tail end of a 'mushrooms' storm which Pinksharkmark and Flash et al seem to have weathered and won through.
I wouldn't get despondant though, 'new' its swear word in the Medical Community as a whole.
You see knowledge and expertise form social ranking within their respective communities, so when some blue flame punk pulls in with something new, alot of egos get challenged. This is not wrong, its nature, or Gog or what ever you like. Socrates and Jesus threatened so many egos that society had to 'put them down'. Galleleo was placed under house arrest for insisting that that the earth revolved around the sun, Alexander Bell was told that telephones were a crap idea, and Einstein said that a new theory is only accepted when its opponents eventually die out.
But remember this, there are many people who watch this board that don't say nuffingk. And there's alot that just don't like to fight.
I got caught up in the teddy's and jonny's and franks and Pacos too. But remember this also, that the Teddys and Jonny's and Franks and Pacos and Bennie Sues and Margies are 'old' battle scared warriors that have faught side by side for many years, lifetimes perhaps, and pulled each other out from behing enemy lines countless times. They've saved lives together,
and that makes bonds that last like iron. We may have some new stuff but there's many many folk out theres who's only hope rests with this army, the new stuff may A) be wrong and B) never reach them.
Back to the medical stuff.
One of the biggest misconceptions on this board, for me that is, (please excuse but I cain't hold this down no longer) is that clusters are absolutly specific. Its strange to me because if you read over a period of time you find so many different things that some suffer from and others dont. And so many things that overlap with migraine or TN or tension type headache.
We (My Dad and I) belive that clusters form part of a continuum. They have overlaps with migraine, tension headaches. How many custer sufferes have had a migraine, shoulder tension, neck tension. For us this a multiple input scenario. And yes WE HAVE FOUND AN OVERLAP WITH TN. That doesn't mean that everyone gets it, but some CH sufferers touch on the borders.
You'd be interested to know that a little while ago on this board a guy claimed that he found his clusters to be linked to TN and that simply by sleeping on the other side of his face he's managed to stop his attacks. Is this true for every body? NO WAYS! But that doesn't mean that there isn't a link, it doesn't mean that Tn doesn't form part of the continuum.
There's a surgery I'm sure you know of, I ain't read your thirty pager) called gamma knife surgery - I THINK (please excuse) that this involves severing or burning of the TN. If this works in some CHers then Hey Presto, there's a link and TN goes onto the list of possible inputs.
What comes to mind is whether the surgery for TN has ever ben tried for clusters. I don't know exactly but its something about separating the nerve from the artery right up in the brain (please excuse, no knowledge, just hear say). Has anyone ever tried this?
I've read on this board from some one who's Clusters were linked Laughing. We've had patients with TN (not clusters) that say if they even dare to smile - bang - they get it. Link? Possible input in SOME? We think so
Also the TN is the nerve that services that area, so why should cluster have nothing to do with TN?
Please link your thirty pager to this mail we'd be very interested to read it.
No offence intended
Please hold the hate mail
Daniel