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New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> GLBT Clusterheads?
(Message started by: PittsburghJoe on Mar 24th, 2004, 7:00am)

Title: GLBT Clusterheads?
Post by PittsburghJoe on Mar 24th, 2004, 7:00am
Not trying to open a can of worms here or start a flame war or anything, but...

Any other gay clusterheads here? Just curious...

My partner is the BEST support I could ask for. He hates the beast as much as I do!

Title: Re: GLBT Clusterheads?
Post by Bob_Johnson on Mar 24th, 2004, 9:31am
No covert links to Liberty University here!

A cluster is a cluster is a cluster. Our primary bond!

Title: Re: GLBT Clusterheads?
Post by thomas on Mar 24th, 2004, 10:11am
Straight as an arrow myself, but welcome aboard, sorry you had to join us. (because of the pain)

Title: Re: GLBT Clusterheads?
Post by PittsburghJoe on Mar 24th, 2004, 10:13am
LOL Bob, I wasn't suggesting anything like that, it was simple curiosity.

Besides, some studies suggest orientation is somehow tied into the hypothalamus.  And I know some studies suggest clusters come from there too, though I would assume the mechanism is MUCH different.

Title: Re: GLBT Clusterheads?
Post by Luke63 on Mar 24th, 2004, 10:39am
Family here Joe..and in Pittsburgh..better yet!!  Drop a line [smiley=hiya.gif]...Luke

Title: Re: GLBT Clusterheads?
Post by FZfan on Mar 24th, 2004, 5:45pm
Welcome to the group, Pjoe. Terribly sorry about your CH's. I know you will find some comfort and help here.

I could give a shit less what your race, creed, sexual orientation, or political affiliation is.

I've not met any other gay members here yet (that I know of), but I haven't been here very long either. Simple statistics would seem to indicate that there must be at least a few others here.

The support you get from your partner is probably as valuable as anything for dealing with this affliction. I know my wife has made my cycles much easier to bear, and discovering this group has made them even easier. And, in a strange way, dare I say even more "fun"?

Sounds like you know a bit about CH. I would still strongly encourage reading everything available here and at the OUCH web site, but I somehow think you've probably already done that.

Best of luck in your battles with this beast.

Glen

Title: Re: GLBT Clusterheads?
Post by t_h_b on Mar 24th, 2004, 8:02pm
Welcome aboard.  What kind of meds are you on?  Do you have a good neurologist? Chronic/episodic?,  etc.

Check out the OUCH website through the link to the left.  Consider joining.  There's also some good information there in the "library".

Title: Re: GLBT Clusterheads?
Post by JJA on Mar 25th, 2004, 2:28pm
Hey,  
Not gay myself, but I did see some posts in the archives.  Look under December 1998 (sorry I don't know how to post a link).  I'm not sure if those guys are still around.   That was a long time ago.

JJA

Title: Re: GLBT Clusterheads?
Post by PittsburghJoe on Mar 25th, 2004, 2:57pm

on 03/24/04 at 20:02:49, t_h_b wrote:
Welcome aboard.  What kind of meds are you on?  Do you have a good neurologist? Chronic/episodic?,  etc.

Check out the OUCH website through the link to the left.  Consider joining.  There's also some good information there in the "library".


Sorry, didn't mean to intrduce myself by setting myself apart. I have to remember that reading post from everyone here doesn't mean you know me!  ;;D

Right now I'm on a prednisone taper (second round for this cycle, with several breakthrough HAs), Depakote ER 500MG, and Imitrex 100 (new formulation, acts pretty darn quick for a pill). Can't seem to get my PCP to let me get on verapamil or injectible trex. I have verapamil here that's about 2 years old, but I'm not about to try it out.

I'm expecting my first O2 to be delivered today, hope it gets here soon!

Also, I'm episodic, have been for nearly 20 years now. Oddly enough, when I first started getting these at 19, the doc made the CH diagnosis pretty quickly. I didn't know then how rare it was for a doc to know about CH in 1984!

As far as my doc, I'm just going with my PCP for right now. I made the biggest mistake one can make in the US right now, and quit my job a couple weeks ago. The stress was getting WAY too high for the peanuts they paid me, so I walked after 4 years on the job there. Anyhow, the upshot of that is my insurance runs out at the end of this month, so I'm kinda stuck with what I have for now. Hopefully this cycle that's been running a few weeks is gonna end soon, I can't affrod any more meds!

Well, I hope that makes a better introduction. Thanks to all of you for being here, and PFDANs to you all!

Joe

Title: Re: GLBT Clusterheads?
Post by Tiannia on Mar 25th, 2004, 3:58pm

on 03/24/04 at 07:00:10, PittsburghJoe wrote:
Not trying to open a can of worms here or start a flame war or anything, but...

Any other gay clusterheads here? Just curious...

My partner is the BEST support I could ask for. He hates the beast as much as I do!


No reason this would start a flam war that I can think of.  We are one big screwed up family of clusterheads.  Welcome aboard, but wish you did not have to be here, like the rest of us.  

-Tia

Title: Re: GLBT Clusterheads?
Post by t_h_b on Mar 25th, 2004, 6:33pm

on 03/25/04 at 14:57:48, PittsburghJoe wrote:
As far as my doc, I'm just going with my PCP for right now.


Better a good PCP who'll write for what you need than a misinformed uncooperative neuro.

Hope the oxygen helps you as well as it does everyone else.  Don't forget you need a high enough rate and a nonrebreather mask.

Title: Re: GLBT Clusterheads?
Post by Robert the....... on Mar 25th, 2004, 6:55pm
A can of worms or flame war!! not likely on sexual orientation.

I'm not Gay But I'm ECH and If you are a CH'r you are right by me.

Come on some of my best Friends on this board are English so we have to be tolerent somewhere ;;D ;;D ;;D


PFDANS
Scott

Title: Re: GLBT Clusterheads?
Post by genss on Mar 26th, 2004, 10:49am
Beware, on the prednisone tapers, if you take 2 taper presicriptions.  I took 2 that lasted about 4 weeks.  At the end of the 4 weeks, my knees were so weak at times I could not walk.  Also, the rest of my muscles were weak too.  I couldn't pick up babys or stand in line anywhere for a week.  

Title: Re: GLBT Clusterheads?
Post by cathy on Mar 26th, 2004, 12:32pm
Joe welcome to the board, don't think anyone cares what you are as long as you got CH, and Scott as we've not had the pleasure of getting to know one another i'll just take your comment the way it was meant.... ;;D



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