Hi all.  Phil has his appt. tomorrow at the pain clinic in Ann Arbor.  We are armed and dangerous with info from all of you.  Hopefully we get some solutions, beginning with the right O2 regulator.  We're going in fighting and we are going to war and we are going to kick the beasts ass into submission.

OHH! I can see a huge change in the Flips family!
Brew's right, but I think I know you don't mean war, as in war against the Drs.rather war against the Beast himself!
YOU two GO tomorrow, and please please, let us know the results!
PF to Phil!
Cathi

I had to respond to this Flipperlips is my wife and she is the sweetest, most caring and harmless women I know.  She always comes to my doctors appts. I do most of the talking and when I start getting frustrated she will step in and calm me down, she also help explain things, when I hit a 9k or 10 I dont rember what happened.  So anyway, she is upset and hates to see me in pain as I hate to let her or anyone see me like that, but mostly her.  I have a very high pain tolerance, but these CH's kick my ass, I try to not let it affect anything but it does, and I dont know if I could do this without her. Thanks honey much love, Phil

Brew is absolutely right....it's so hard not to be exuberant as we finally understand what we're dealing with here, especially when we realize that most docs don't study enough about cluster headaches, even some neuros.  I was like a sponge reading and learning in those years.

The first time we got in to see a neuro, i went armed with a binder full of printouts from here and stuff I'd found.  Not a good idea at all in our case.  The neuro hated me and when he tried to prescribe Mike percocet for the pain i realized we had a problem.  So I subserviently said to him that we've found that (at that time) verapamil was working as a good preventative and imitrex a good abortive.  Oh and could we please have a prescription for oxygen.  He wouldn't prescribe us the high flow regulator though...he prescribed it at 4 litres per minute.   

Our friend Jonny from here was our cluster angel and sent us one that he made for Mike and sent it to us from Boston (we are in Canada). 

We ultimately got "dismissed" from that neuro with the excuse that our health care system in Canada is overtaxed and they were encouraging all of their patients to see GP's instead of specialists.  My ass.  I just pissed that doc off by being more knowledgeable and showing him up.  It put a black mark on our file from that day forward.  I felt terrible for that. 

We did end up with a good GP though and Mike actually had an attack in his office.  Scared the shit outta the doc as he'd never seen a cluster before and told us he'd give us whatever we need.  So I had my laundry list of options there and said 'ok, we find imitrex causes more attacks, so can we try zomig?  Can we do a pred burst to break this cycle, oh and we need to get a high flow reg for our tanks'.  He was just taking notes furiously and we walked out of there with everything we needed.  I'm sure that's only because he saw the pain firsthand though.  He was pretty aloof at first too.  Now, all I have to do is call and ask for refills when we need them.  We lucked out.

Hope it goes well for you today and you come back home with new weapons in your arsenal.

Thanks Linda,  everyone wishes they were me  Phil