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Title: New to ch.com Post by Rick_K on Nov 30th, 2003, 2:37pm Hello everyone……. I’m new to ch.com, found you guys kinda backwards, I was “invited” over here from the OUCH message board. A little about me…I’m 49 years old (yes, soon to be 50!) and have suffered from clusters since 1969. Was not correctly diagnosed until the mid 80’s buy an old doctor who still wore the little mirror with the hole in it on his head, he called it “Horton’s Syndrome”. Just finished a looooong 5 month battle with the beast, but happy to say been pain free for about 2 months now. One hell of a summer. Thank you for listening and being here. I’m proud to join such a great family, if I’m invited in… Rick |
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Title: Re: New to ch.com Post by Mastifflvr28 on Nov 30th, 2003, 2:41pm Of course you are invited in Rick, Welcome to this crazy family!! Whilst you are out of cycle, this is the PERFECT time to educate yourself on this condition and there's no better place then here and over at the OUCH site. Hopefully we can help make your next cycle your easiest one to get through :) Take care, Mast |
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Title: Re: New to ch.com Post by jonny on Nov 30th, 2003, 3:17pm Welcome Rick. Invited?....we dont send out invitations but then again we welcome all that suffer or support CH. ....................................jonny |
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Title: Re: New to ch.com Post by Rick_K on Nov 30th, 2003, 3:33pm Thank you :D PFDAN to all Rick |
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Title: Re: New to ch.com Post by ClusterChuck on Nov 30th, 2003, 3:50pm Welcome aboard, Rick! Are you sure you want to align yourself with this bunch of loonies? (But I am ok!) Tell us some more about your fight with the beast, like how often you get them, how long does a cycle last, what meds you have tried, what were some of the "diagnosis" that were thrust on you? We are all in this boat together, and it takes all of us to move this thing along, so grab an oar, take a seat and start rowing! (If not, the oar mistress, Cootie, will make SURE you do. Don't get her pissed! haha!) Look forward to hearing more from you! Chuck |
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Title: Re: New to ch.com Post by Prense on Nov 30th, 2003, 3:50pm Welcome aboard Rick! Read as much as you can from this site, you will not be disappointed! Chris |
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Title: Re: New to ch.com Post by Little Deb on Nov 30th, 2003, 4:01pm Welcome Rick from Dallas! You have found a place to call home. You can have that room over there [smiley=deal2.gif]. Here is the lease...I take money orders only, and don't be late! I'll give you the first month for the low, low price of $125.oo a month. Oh, and we don't have maid service, so please pick up after yourself. Once again, welcome to clusterville! Have a nice day ;) tryin' to make a buck...Little Deb |
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Title: Re: New to ch.com Post by cathy on Nov 30th, 2003, 4:13pm on 11/30/03 at 14:37:24, Rick_K wrote:
Hi Rick great to hear your PF welcome to the family... Cathy |
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Title: Re: New to ch.com Post by ClusterChuck on Nov 30th, 2003, 4:19pm on 11/30/03 at 16:01:28, Little Deb wrote:
Deb, I thought you liked me! Why did you charge me three times that amount? Now I am hurt ... sniff snifff ... Chuck |
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Title: Re: New to ch.com Post by Little Deb on Nov 30th, 2003, 4:21pm Chuck, I am getting desparate this close to Christmas. I'll take what I can get!!! |
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Title: Re: New to ch.com Post by don on Nov 30th, 2003, 4:39pm Welcome aboard Rick. If I were still waiting for the invite my last post would have been in 2000 ! |
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Title: Re: New to ch.com Post by Rick_K on Nov 30th, 2003, 5:13pm Well Chuck, there have been so many over the last 34 years I can’t remember them all so I’ll touch on the highlights I can remember. When they first started it was an eye problem and the doctor said I needed glasses, that didn’t work. I then spent about 15 years with sinus problems. Every time the beast came a knockin’ I had a sinus infection so that was the problem, go figure. The doctor that diagnosed clusters, he called it Horton’s Syndrome, used an 8” wire with a small cotton ball on the end that he dipped in a 5% cocaine solution and shoved up my nose to deaden a group of nerves (makes my nose hurt just thinking about it). That worked once although I had the treatment during my next two cycles with the beast with no help or relief. That was in the mid 80’s. Back to my regular doctor and a couple of nuros who used pain killers like candy, they had no idea what they were dealing with. Went through a lot of “try this and give me a call”. Found oxygen in the mid 90’s (yea) and a nuro who knew his stuff in 98. Presedone, Verapamil and Caffergot along with imatrex and oxygen is the latest cocktail that seems to work for me. As for when the beast came visiting, I cannot remember when or how long in the 70’s or 80’s but in the 90’s I was on a cycle of 3 months pain and 3 years pain free. Found my current nuro in 98 and after a 3 month cycle, that was the first time on Presedone, Verapamil and Caffergot, had 5 pain free years only to go through the 5 month cycle last summer. I don’t know but sometimes I think the drugs have lengthened the cycles but the pain is a little more under control, not much but a little. I’ll take what I can get. I’m glad I found a new home and I should fit right in with a bunch of loonies. Rick |
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Title: Re: New to ch.com Post by BlueMeanie on Nov 30th, 2003, 9:06pm on 11/30/03 at 15:50:06, ClusterChuck wrote:
Welcome Rick. I'm kinda new here at Clusterville. One thing is for sure. ClusterChuck couldn't have said it better. LOL Great Bunch Of People Here Who Are Willing To Listen & Help All They Can. |
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Title: Re: New to ch.com Post by Patrick_A on Nov 30th, 2003, 9:11pm Hey Rick, Glad to see ya found the CH.com site. I noticed ya wondering around at OUCH.com and sent ya the invite to visit us here. Grab an oar bro, If ya aint suffering, Ya gotta row! Patrick ;;D |
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Title: Re: New to ch.com Post by TxBasslady on Nov 30th, 2003, 9:43pm :) Hi Rick, Welcome to the board! Lotz of great info here.....and good friends too! 8) Usually someone here 24/7........so keep posting and let us know how you are doing. Wow......Texas is upping their population here on the board.....lol Hope you enjoy this "family" as much as I do!!! :-* Jean |
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Title: Re: New to ch.com Post by Charlie on Nov 30th, 2003, 9:59pm Quote:
You're not kidding! It's tough having to slog your way around in here. We're easily side-tacked. [smiley=laugh.gif] Welcome to the madhouse and these goofs know more about this horror than most anyone. You'll find some good ideas here. Mine too began in 1969 when I was 23. I've been PF since 1991 and other than my being 57, I have no idea why. I'm not complaining. Here's to another 10,000 PF months. Charlie |
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Title: Re: New to ch.com Post by mikeyd on Nov 30th, 2003, 11:28pm Welcome Rick, Enjoy your stay at the clusterhead hotel! [smiley=thumb.gif], Glad you could make it! Mikeyd |
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Title: Re: New to ch.com Post by nancyc on Dec 1st, 2003, 12:37am Hi Rick...welcome to clusterville....grab an oar...and dont forget you have to take the dogs out on monday nites and on saturdays you get to pick up the icecream for Mastiff ....Make yourself at home...take your shoes off and stay awhile... :)nancyc ps Don't worry about being late on the rent, Deb is a real sweety!... ;;D |
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Title: Re: New to ch.com Post by cootie on Dec 1st, 2003, 12:47am Oar mystress domineque cootie here..........so git your leather suit on and start rowin with us........glad ta have ya aboard !!! OK git busy........row row row yer boat...........hmmm........where have I heard them lines before ? Pam that's boat is not always afloat ;;D |
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Title: Re: New to ch.com Post by Mikey on Dec 1st, 2003, 1:00am Welcome aboard Rick.....Chuck was lying, he's not OK!! Anytime you need us, we're here, and ask all the questions you want to ask, because like Charlie said, you are with some of the most informed, and loving people in the world. So, grab your oar and start rowing with us to a cure!! Don't wait on any invitation, just jump right in!! Mikey, ;;D PS, Chuck, don't go tell stories about yourself anymore!.. :) |
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Title: Re: New to ch.com Post by ClusterChuck on Dec 1st, 2003, 1:40am on 12/01/03 at 01:00:08, Mikey wrote:
"Why's everybody always picking on me?" Chuck (or should I say, Charlie Brown?)(He's a clown ...) |
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Title: Re: New to ch.com Post by BarbaraD on Dec 1st, 2003, 5:25am Welcome to Clusterville. Most of the loonies here are really harmless regardless of what they say about each other. Since you're not in cycle right now, you can do the support thingy. There's a lot of people right now who are in cycle and need support BIG TIME. We're nosey and will know all about you before it's over. Just go ahead and tell all your deep dark secrets and get it over with. Inquiring minds and all that. This board is addicting. You MUST visit at least once or twice a day just to keep up with the latest. Read the archives and find out what's worked and what hasn't worked for a lot of us. Read the med page and see what meds are available so you'll be informed when you visit your doc. My doc still calls CH Horton's Syndrome too. But he's older than me (and I'm older than dirt). That's what they taught in med school years ago. It's the droopy eye thingy. he also calls them "histimine headaches" sometimes. But I'm educating him and when I tell him something, he tunes in and listens. Welcome aboard - now watch out for Cootie...... Hugs BD |
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Title: Re: New to ch.com Post by jadedgazer on Dec 1st, 2003, 7:54am Welcome aboard Rick. Absorb the information Bask in the friendship & Lean on & Lend support when you are able. |
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Title: Re: New to ch.com Post by duchartin on Dec 1st, 2003, 8:09am Bask in the friendship... That is maybe the best definition what this site is about. Welcome & share the positive vibes from all your brothers & sisters around the world ! Wishing a PF Christmas to everybody, by the way. Martin |
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Title: Re: New to ch.com Post by thomas on Dec 1st, 2003, 9:57am Doesn't matter how you found us - just a long as you found us. Welcome. :) |
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Title: Re: New to ch.com Post by Rick_K on Dec 1st, 2003, 1:19pm Got my oars and I'm ready to row. Not to sure about the leather suit, is that to block some of the pain from the whip? Deb, checks in the mail... Rick |
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Title: Re: New to ch.com Post by ClusterChuck on Dec 1st, 2003, 1:38pm on 12/01/03 at 13:19:27, Rick_K wrote:
Damn! Rick must be a keeper! The check is already in the mail! - - - Oh wait, is this another statement like "I won't cum in your mouth..." or "It's only a cold sore ..." or "Of course I will respect you in the morning ..." ? Chuck |
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Title: Re: New to ch.com Post by Rick_K on Dec 1st, 2003, 11:38pm Now now, the checks in the mail..........I thought I was supposed to send it to OUCH maybe it was lost in the mail ......no, I still think it was to go to OUCH Rick |
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Title: Re: New to ch.com Post by Little Deb on Dec 1st, 2003, 11:51pm Chuck, you don't know Rick well enough to say those nasty things!! For shame, for shame..... What would your mother say.... |
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Title: Re: New to ch.com Post by ClusterChuck on Dec 2nd, 2003, 12:14am on 12/01/03 at 23:51:11, Little Deb wrote:
It will usually start out with "How many times have I told you ... ?" Damn, 53 years old and Mom still yells at me! Lucky me! (and I say that with all seriousness, I am VERY lucky! Both my parents are still alive! 81 years young and going strong!) Chuck |
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