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Topic: GLBT Clusterheads? (Read 453 times) |
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PittsburghJoe
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Go away pain!
 
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GLBT Clusterheads?
« on: Mar 24th, 2004, 7:00am » |
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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!
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Nothing worth having comes without some kind of fight. Gotta kick at the darkness till it bleeds daylight. - Bruce Cockburn, "Lovers in a Dangerous Time"
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Bob_Johnson
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Re: GLBT Clusterheads?
« Reply #1 on: Mar 24th, 2004, 9:31am » |
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No covert links to Liberty University here!
A cluster is a cluster is a cluster. Our primary bond!
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Bob Johnson
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thomas
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Straight as an arrow myself, but welcome aboard, sorry you had to join us. (because of the pain)
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PittsburghJoe
New Board Old Timer
Go away pain!
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Posts: 447
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Re: GLBT Clusterheads?
« Reply #3 on: Mar 24th, 2004, 10:13am » |
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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.
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Nothing worth having comes without some kind of fight. Gotta kick at the darkness till it bleeds daylight. - Bruce Cockburn, "Lovers in a Dangerous Time"
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Luke63
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For sale: 1 BIG BARKING HEAD Price: Free
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Re: GLBT Clusterheads?
« Reply #4 on: Mar 24th, 2004, 10:39am » |
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Family here Joe..and in Pittsburgh..better yet!! Drop a line  ...Luke
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I think we should all get together and do a movie..."Night of The Clusterheads". George Romero would have nothing on us!!!
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FZfan
New Board Old Timer
Not Insane
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Re: GLBT Clusterheads?
« Reply #5 on: Mar 24th, 2004, 5:45pm » |
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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
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There is no such thing as a dirty word. Nor is there a word so powerful, that it's going to send the listener to the lake of fire upon hearing it. - FZ
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t_h_b
New Board Hall of Famer
primary chronic since 1999
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Posts: 527
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Re: GLBT Clusterheads?
« Reply #6 on: Mar 24th, 2004, 8:02pm » |
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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".
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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JJA
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Re: GLBT Clusterheads?
« Reply #7 on: Mar 25th, 2004, 2:28pm » |
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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
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Is it illegal because it's dangerous or is it dangerous because it's illegal? Our drug laws are ruining lives.
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PittsburghJoe
New Board Old Timer
Go away pain!
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Posts: 447
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Re: GLBT Clusterheads?
« Reply #8 on: Mar 25th, 2004, 2:57pm » |
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on Mar 24th, 2004, 8:02pm, 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". |
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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! 
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
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Nothing worth having comes without some kind of fight. Gotta kick at the darkness till it bleeds daylight. - Bruce Cockburn, "Lovers in a Dangerous Time"
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Tiannia
New Board Hall of Famer
Life does not apologies......
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Re: GLBT Clusterheads?
« Reply #9 on: Mar 25th, 2004, 3:58pm » |
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on Mar 24th, 2004, 7:00am, 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! |
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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
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The curious paradox is that when I accept myself just as I am, then I can change. - Carl Rogers
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t_h_b
New Board Hall of Famer
primary chronic since 1999
Gender:
Posts: 527
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Re: GLBT Clusterheads?
« Reply #10 on: Mar 25th, 2004, 6:33pm » |
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on Mar 25th, 2004, 2:57pm, PittsburghJoe wrote:
As far as my doc, I'm just going with my PCP for right now. |
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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.
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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Robert the.......
New Board Newbie
I'm gona get that CH Beastie
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Re: GLBT Clusterheads?
« Reply #11 on: Mar 25th, 2004, 6:55pm » |
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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
PFDANS
Scott
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genss
New Board Newbie
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Re: GLBT Clusterheads?
« Reply #12 on: Mar 26th, 2004, 10:49am » |
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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.
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cathy
CH.com Alumnus
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Not all those that wander are lost......
 
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Re: GLBT Clusterheads?
« Reply #13 on: Mar 26th, 2004, 12:32pm » |
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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....
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My own tears would mean nothing to me, if I could stop you from just shedding one....
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