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New CH.com Forum › Daily Chat › General Posts › Let's start over

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Let's start over (Read 5401 times)

Redd

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Re: Let's start over
Reply #25 - Nov 17^th, 2008 at 11:59am

Hi and WB Tony.

I'm Pegg. Been hanging out 'round these parts for 5 years come springtime.

I'm a managed chronic CH sufferer of some 20+ years. I say managed, because without the information and support of the folks at clusterbusters.com I'd still be in a world of hurt. I've been managed and mostly PF for just over 2 years now. I have to stay on top of it though.

I try not to get into the infighting here. I'll hunt Ali and his kind of trolling ways any day of the week.

The rest of the people I consider my family. New or old.

LYG's

"The goal of life living in agreement with Nature." ~Zeno

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barry_sword

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Re: Let's start over
Reply #26 - Nov 17^th, 2008 at 12:07pm

Hi Tony, nice to meet you and all the other folks here.
My name is Barry and I am a Clusterhead. My wife Angie is my rock, and she is the best supporter anyone of us could ask for.

I am currently in cycle but I use o2 to abort and Verapamil as a preventative, which works well for me.

I check in here alot, so hope to get to know all of you a little better.

QUIT SMOKING SEPT. 03 2005
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mezza

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Re: Let's start over
Reply #27 - Nov 17^th, 2008 at 12:18pm

Hi everyone-

My name is kelly. I am episodic , usually about 3 years between cycles ( hoping that luck continues.) I am 38 yo, married and have two kids ages 5 and 7. My family are my best supporters.

I have CH since I was 25 but only found this site in March of this year. Thank goodness. This site and the great people on it provided me with the necessary information to get the right treatment

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Ray CH.com Alumnus Offline Ray Posts: 1996 Columbus, Ohio Gender:	Re: Let's start over Reply #28 - Nov 17^th, 2008 at 1:08pm Hello Tony and Clusterville: I'm a 50 year old chronic CH sufferer for over 21 years now. I've been on this board for about a year and a half and try to keep things in a positive context. Wishing you all well, Ray
Back to top	You have my prayers and compassion-I'm right there with you. Dum tempus habemus, operemur bonum While we have the time, let us do good Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or IP Logged

Garys_Girl

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Re: Let's start over
Reply #29 - Nov 17^th, 2008 at 2:03pm

Thanks, Tony for starting this thread! I see so many of you post but don't know anything about you, so thanks for this. Smiley

I'm Gary's supporter. Thanks to CH.com we figured out what was happening to him in 2006. Of course it dates back to 1999 - well - actually he can remember having had individual attacks as far back as when he was 17, but he's been chronic since March 2006, and has had no pain free time since around January or February of 2007. Unless you count sleep, of which he gets about 2 1/2 hours a night - though many are sleepless Sad

.

We work as partners in biz - we conduct equity research for a living, though Gary is the firm's Chief Strategist and he is also the firm's economist.

We were high school sweethearts in 79/80 and went our separate ways - me to a Quaker College and Gary to the army. Grin

Got back together in 1993 and spend 24 hours a day together since. We both left our jobs, we bought an RV and got rid of the apartments, and we lived full time on the road for 10 years. The internet has made that marketing aspect of our work moot, which is great, because now with his clusters, we couldn't do it. Thankfully we can telecommute, and as our customers are institutions, not individuals, they don't require much hand-holding - because getting into NYC is a pain in the butt.

Gary's got a bit of a medical mystery going on now, and we're working to figure it out under the co-ordination of his neuro at Montefiore.

We rescue cats, and have 7.

We adopted a daughter when she was a teen (and we'd moved into a house). Different long story, but she's mentally ill, so she is very well cared for at a great institution.

Us in a nutshell.

Thank you, CH.com for being here. !! It's a great community for learning and sharing info, and I like helping newbies especially because I remember those days......

And I always write too much.

Laurie

« Last Edit: Nov 17^th, 2008 at 2:11pm by Garys_Girl »

This is enough already

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Lenny CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 642 Los Angeles,CA Gender:	Re: Let's start over Reply #30 - Nov 17^th, 2008 at 2:56pm Great thread Tony.....My name is Lenny.....I am from the Los Angeles area.....I like my woman and cars fast "very-fast" ......On the serious side......It's good to see you posting Tony and i hope all is well.....
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Charlotte

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Re: Let's start over
Reply #31 - Nov 17^th, 2008 at 3:35pm

hello, Tony. It is good to see you.

My name is Charlotte. I have been chroic since about 2001 an was episodic before that. I have additional types of headaches, and find them very distracting - it's a stuggle, really.

I am a watercolor sketcher, and always carry some paint, water, & paper with me in case I get hit with inspiration - and do small paintings on my lunch hour, before work, and other free time like waiting for someone to come out of surgery.

I have 5 grown children, a sweet husband, & 1 cat. I am a dog person but hubby Joe is not, so I had to pick - him or a dog - i picked him.

I have met a number of people from the board, when i'm travelling or they are passing through my town. It is very heart-warming, like an instant bond. It is nice to get together and speed talk meds & cycles, and get hugs.

We pray for each other. Let us know and we will keep you in heart & mind & prayer.

I haven't been posting much as of late, due to a struggle with a different kind of headache, not ch. My ch is doing ok right now with a med plan my neurologist helped work out.

I am looking forward to seeing you more often.

best regards,
Charlotte

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debOUCH

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Re: Let's start over
Reply #32 - Nov 17^th, 2008 at 5:25pm

Hi Tony..........I am Deb from Long Island NY, and I "think" I am chronic, since I am still in my first ever cycle since January of this year.....I diagnosed myself, with the help of this site, (and YOU also!), by around March, or April, I believe.............. ....The only preventive I take is ELAVIL, @ bedtime, and it still works for me, with increase in dosage a few times................I am 51, separated, with 2 children, Keith is 23, and Samantha is 19.......................if it weren't for the site, I really don't know where I would be...........DJ is our "angel".............My biggest supporters are "my family" on here.....................I am glad to formally meet you....................wishing you PFDAN, and health and happiness daily...............
deb

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KJ CH.com Alumnus Offline Posts: 596 Indianapolis, IN Gender:	Re: Let's start over Reply #33 - Nov 17^th, 2008 at 7:20pm Hey Tony! Great to see you around, my friend. My name is KJ, and I like to be spanked! I know, I know, that's really something to share, wow, but if Tony has the guts to start a thread called Let's bend over, then I'm all in! What? What is it? Let's START over? Oh my. Well, anyway, I hope we all can lighten up. Love ya. KJ
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DonnaH_again

Ex Member

Re: Let's start over
Reply #34 - Nov 17^th, 2008 at 8:45pm

Hello All and Thanks Tony for opening this new door.

My name is Donna H. I think I am the third oldest person here, after Bob Johnson and perhaps Ueli.

I was an episodic sufferer for 28 years. Cycles spring and fall for almost exactly 6 weeks each time. Lots of 9's and a couple of 10's each cycle. Lots of runs to the ER, only to have the ch stop before I could get to see the ER doc. No one really knew what a cluster headache was back then when I first started although I was treated with Sansert (nasty drug), but it didn't help so I finally quit trying to find out what to do about the headaches. I just carried on the best I could, raising three children by myself. There were many times that I didn't think I could do it. Sleeping in a chaise lounge trying to avoid the headaches didn't work...nothing did.

In 1986 I had a hysterectomy and the headaches stopped dead in their tracks. I was put on a testosterone hormone replacement therapy and the headaches never came back.

My son John started with clusters at age 17 and was treated with Inderal, and of course, it didn't help. I was still naive about the fact that there were now meds for clusterheadaches.

In August of 1999, he had one of his worst cycles and I started searching the internet for info.........and that's when I found this wonderful second home. We found an abortive for him here, and so far, it works every time.

Since I don't (can't) fly, I haven't been able to attend any conventions yet after being here almost 10 years, so I decided to have a couple of gatherings here in my home town. About 12 people came. It was amazing.....to meet another cluster head is the 8th great wonder of the world.

So, there IS hope that your headaches will cease with time. I'm still pain free since 1986.

I pray every day for a real breakthrough in research so that everyone can live pain free.

Love you all,
DonnaH. Kiss

« Last Edit: Nov 17^th, 2008 at 8:49pm by N/A »

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kayarr

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Re: Let's start over
Reply #35 - Nov 17^th, 2008 at 9:31pm

Hi Tony, I missed you:)

My name is Kimberly and I am the wife and supporter to Jeff my chronic clusterheadache honey.

I remember one of our first dates, he had hidden his O2 tank from me at first and he was a little defensive when he had to pull out the hose in the car. I may have said a little no-no too like "I have migranes..." Shocked

But, we made it past all the awkward beginnings and are going to celebrate our 5th wedding anniversary the 29th of this month.

I cried from relief when I found this site. I hadn't realized the stress of being so strong for someone you love. That is a little of our story.

Thank you DJ and all the others for being here and all the information available.

Kimberly and Jeff

Nothing is impossible! Just believe!!!!!

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cash5542

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Re: Let's start over
Reply #36 - Nov 17^th, 2008 at 9:41pm

Hi! My name is Charlotte and I live outside Ocean City, Maryland with my daughter, wonderful husband and my adorable almost 2 yr old golden retreiver, Maddie. I am a supporter of a 23 year old daughter with CH. We have been dealing with severe asthma and a few migraines since Lisa was 12 so being a supporter wasn't new to me. She is chronic since July 2006 and was very quickly diagnosed. The first year was pure hell but with lots of various help from some great doctors, clusterbusters and this group, she has her life back.

I am an elementary art teacher and have taught 3 year olds to 6th grade for 28 years. I love my job (most of the time), swimming, and the beach. I also have a 25 year old son who is living with his wife in Kauaii.

It's great to see you again Tony and am still waiting for a York trip someday!!

Charlotte (mamaswimchica)

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MPMIII

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Re: Let's start over
Reply #37 - Nov 18^th, 2008 at 9:33am

Tony,

Malcom here. Diagnosed about three years ago. Chronic. I live in LA (lower Alabama) with my lovely wife and daughter(8.5 months). My saving grace right now is Verapamil. Keeps my hits somewhat manageable. I stay busy with commercial real estate development, soccer, watching football(roll tide-go bronco's), fishing and my wonderful family.

Regards,

Malcom

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Guiseppi

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Re: Let's start over
Reply #38 - Nov 18^th, 2008 at 10:43am

Caio my Italian friend...who makes AWESOME biscotti....welcome (back) to the board.

I'm Joe, a 48 year old father of 2 beautiful girls, 24 and 22, who have both flown the coop. With a beautiful wife who has stuck with me for almost 29 years of the beast! I'm episodic, typically 2 cycles a year, spring and fall, 8-12 weeks in duration, with rogue 8 month cycles and occasional remissions of up to 2 years.

I use lithium as my primary prevent, 1200 mg a day while on cycle. Doesn't zombie me out just makes me pee a lot!!! Oxygen is my promary abortive, never far from my lovely E-Tanks!

Glad you (re) found the board, looking forward to getting to know you. Wink

Guiseppi

"Somebody had to say it" is usually a piss poor excuse to be mean.

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kevmd

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Re: Let's start over
Reply #39 - Nov 18^th, 2008 at 6:02pm

A fresh start? Awesome. OK, I'm Kevin 33 years old from Philadelphia. I have been episodic since I was 20. First 5 years were undiagnosed. I have been married for 7 years to the wackiest girl in Norteast Philly and I have a 3 year old terror, I mean boy. And a 7 month terror, I mean little girl. I love pizza, cheeseteaks, and beer.

PHILADELPHIA PHILLIES 2008 WORLD CHAMPS

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jon019

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"Ya gotta believe!"

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Re: Let's start over
Reply #40 - Nov 19^th, 2008 at 1:44am

Hiya Tony...welcome aboard Wink

...grab an oar and row, there's this mule beatin the drum...I know, strange, but you'll get used to it.

It's a nutty family here at the Hotel Clusterville, it'll grow on you, this FAMILY... and, it's like "you can check out, but you can never leave"...just ask the Limey, she wouldn't even let a knothead like me go. She's currently in the lobby, a little verklempt, and lookin for her bags. The desk clerk is ignorin her tho, cuz she aint goin nowhere...not allowed!

Myself, my name is Jon (room 19, left wing, and that's my location, not necessarily my politics, we don't talk that, it pisses people off and makes them want to leave)...I'm 53 now and can't friggin believe it...beats the alternative tho. Half my life in clusterville so far (rumor is ya grow out of the ville, I'm STILL waitin, til then I'm fine and might even stay anyway)...used to be an on again off again stay..now I'm a "chronic" guest, but damned if I'm not always welcome!...you'll see.

Strangest thing, first time I checked in I couldn't stop crying...I think it was the sign in the lobby. Kinda made me feel like I was home! There's another guest, nama Simon...he wrote this incredible flyer you can show folks as to why you're here. He's got a penthouse room cuz, well, he deserves it. Lots of other folks here that I can't begin to name...come sit in the lobby and you'll meet them all...classy bunch, I'm tellin ya...

Hotel magnate is a fella named DJ...built the place from scratch...with NO scratch...can ya believe that shit? Never ceases to amaze me...no place like it in the WHOLE world. Concierge is a gal named Steph...DJ thinks he's still runnin the place, but we all know that the hand that rocks the cradle...

Anyways...stick around...you'll like it...warm regards?...oh my...oh yessssss...

Jon

« Last Edit: Nov 19^th, 2008 at 1:49am by jon019 »

The LARGE print giveth....and the small print taketh away. Tom Waits

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Mastifflvr28 CH.com Alumnus Offline clusterbusters.com Posts: 3624 Bellingham, WA Gender:	Re: Let's start over Reply #41 - Nov 19^th, 2008 at 3:21am Yeah, what Jon said...here's proof Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or I'm Mast...been hanging round here for about 9 years...been pf for 6. Just can't quite get rid of me Mast
Back to top	Mastifflvr28 (aka Michelle A.) Be part of the solution Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or OXYGEN!!! Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or IP Logged

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