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.  

From what I've heard, you won't need most of it at the Ann Arbor clinic. They've seen folks like you once or twice.

Regardless of where you go, my best advice is to take any chip you might have on your shoulder and leave it in the car before you go in. Have the info, show yourselves to be educated, but any attitude will only work to your detriment. You can even steer doctors without them knowing they're being steered. ;)

Good luck.

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 :-*

Good for you.  Being educated and informed is always the best.  It doesn't hurt a thing to share your knowledge with the doctors.  However being diplomatic is a good approach.

Good luck and let us know how you get along, please.

Jacks 8-)

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

I guess I should clarify what I said.  I didn't mean that I was going to war with the doctors.  Heavens I would never do that.  After all they are doing the best they can to help.  I meant the big nasty beast.  We both have had enough of the beast and I want it to go away for awhile (although it would be nice if it would go away forever for everybody).  I want to see my wonderful hubby PF, even if just for a day.

I think that we are better informed now more so than we have ever been going to a doctor's appointment.  I think that with the knowledge all of you have shared with both of us, we can work better with the doctors to possibly find some relief for Phil.

I'll be back later to ya'll know what happened today.

Love you too babe.  :-*

Talk to you later.

Jen  

 

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.

You are a very lucky man Phil. ;)

Not everyone has a supporter like you have.

Thanks Linda,  everyone wishes they were me  :) Phil