Hello All,

I have been away from the group for a while and then lost my log-in, etc. It is a long story, living in Asia, changed PC's, lost accounts and on and on.
Some of you might remember me - I was living in Taiwan and then Vietnam. After a quick look I recognize "Johnny" if that is the Johnny from many years back.

Anyway, I'll post an update on my Clusters later. Just wanted to say Hello to all.

J

Welcome back to the board! :) How goes the noggin these days??

Joe

Welcome back to the fold.

(You're a spy, aren't ya?  8-)

Charlie

Guiseppi wrote on Nov 17^th, 2010 at 8:36am:

Welcome back to the board! :) How goes the noggin these days?? Joe

Hi Joe,

Thanks for the note.
The noggin is still suffering. When I was young I was told that the Clusters would stop before I was 50. I am now 55 and they are going as strong as ever. Actually, in the late 90's they turned chronic - before that I would have events every 9-14 months (right on schedule). I have tried every substance know to science to try to "stop" them but nothing seems to work with the exception of:

1) Steroids - but these have a profound effect on my body. I feel like I've been hit by a truck in the days that follow prednisone, or cortisone, etc. They do work but I cannot tolerate this stuff to often.
2) Oxygen - this has been my real savior for over 12 years now. But it is not a free lunch since breathing excessive amounts of bottled O2 has a damaging effect on the lungs - or so I am told. And, in many of the countries where I travel/live oxygen is not available outside of a hospital.

I am now connected to a good pain clinic and doctors who know what they are doing. I still hold hope that one day I'll wake-up and find that the pressure around my temple is gone. I can only hope.

All the best,
Jon

Charlie wrote on Nov 17^th, 2010 at 7:13pm:

Welcome back to the fold. (You're a spy, aren't ya?  8-) Charlie

Thanks, Charlie!

You figured that out so easily that my future must certainly be in peril...

Dang glad you at least have the 02, my constant companion when on cycle!!!

Have you looked into   clusterbusters.com? It's had some great success stories for people when most else had failed. Might be worth a look see.

Joe

Welcome back Jon.
After a quick look I recognize "Johnny" if that is the Johnny from many years back.
Nope, it’s not the same person.

breathing excessive amounts of bottled O2 has a damaging effect on the lungs - or so I am told.
I do not believe the small amount needed to stop an attack will do any damage to your lungs.

BobG wrote on Nov 18^th, 2010 at 1:07pm:

Welcome back Jon. After a quick look I recognize "Johnny" if that is the Johnny from many years back. Nope, it’s not the same person. breathing excessive amounts of bottled O2 has a damaging effect on the lungs - or so I am told. Hi Bob - were you here way back when...early 90's..? With regard to O2 and lung damage - I agree with you that small amounts in healthy individuals is not to concern. But, I mentioned "excessive amounts" (>40 Ft3/week) and in the presence of lung disease the numbers decrease. Just another thing we should keep in mind since we are all different. For me O2 at 15L/min will knock down a big boomer in about 10-15min. But, a friend of mine needs 30-45min...sometimes more. Anyway, your point well taken. JB I do not believe the small amount needed to stop an attack will do any damage to your lungs.

Hi Bob - were you here way back when...early 90's..?
No. This sight didn't get started until the late 90's. I've been here since then. Many of us that joined way back in the last century are still here.

Quote:

Thanks, Charlie! You figured that out so easily that my future must certainly be in peril...

And Charlie's to !