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   Author  Topic: Who is who here to the newcommers  (Read 24135 times)
The  mad viking
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Who is who here to the newcommers
« on: Jun 15th, 2005, 5:28pm »
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Thats me last time i was hospitolised to ch.
 
 
Im 51,been a clusterhead since last half of the 80s.
Married and 2 boys.
 
Had a heartattack back in Nov,01
 
My wife is calling me a bigamist sometimes bc im married to her but at the same time i feel married to this beautiful family here in Clusterville.
 
This family here you can trust with your life.
 
Thats about it on me
 
 
So just come on everybody.
Just introduce yourself to the newcommers with a pic of yourself and a tiny story aside
 
 
Svenn
 
 
« Last Edit: Jun 23rd, 2005, 2:07am by The  mad viking » IP Logged

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Re: Who is who here to the newcommers
« Reply #1 on: Jun 15th, 2005, 7:45pm »
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Me? Scewed from birth.
 
 
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Re: Who is who here to the newcommers
« Reply #2 on: Jun 15th, 2005, 9:17pm »
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Myself (copping a feel), DonnaD, Bluemeanie, and Alleyoop
 
55 or so years old;  
27 years with ch;  
last 7 years chronic;  
official ch.com ass grabber;  
almost 2 years since finding this looney bin (don't know how I survived before then);  
have met many crazy clusterheads so far and hope to meet many more;
married 30 years, divorced since Jan 13, 2005;  
4 brats, 2 boys, 27 and 26, two girls, 19 and 17;  
other medical problems (as if ch isn't enough!):  
   several heart attacks,  
   sleep apnea,  
   old bones and joints,
   no memory  (CRS).
 
All I can say to newbies, is Welcome to the looney bin !!!    Also, if you EVER get a chance to meet another clusterhead in person, DO SO!!!  You will never regret it, and they will stay with you FOREVER!  You will never meet a bigger bunch of lunatics (except myself) or people that care as much and will do anything for you.  You will NEVER find bigger hearts than you will find in this family!
 
Chuck
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Re: Who is who here to the newcommers
« Reply #3 on: Jun 16th, 2005, 1:50am »
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Hi there!
 
Welcome to ch family! Smiley
 
I've lived with clusters since fall 2001. First episodic, then chronic, then episodic again, then PF and now back in cycle.
 
I'm originally from Helsinki, Finland. Currently I live in Jyväskylä because of my uni studies (I'm working on my Masters in journalism). I travel to Helsinki and Viitasaari every now and then.
 
When I'm not spending time with my wonderful boyfriend (who is my best ch supporter outside the board) and our 2 guinea pigs, I'm always writing something, reading, doing pilates, listening music (mostly country and rock), walking, watching movies... and naturally in here! Grin
 
Can't wait to meet you all!!!!!  Wink
 
Best wishes & PF days to all,
 
Sanna/sandie99
« Last Edit: Nov 17th, 2006, 7:16am by sandie99 » IP Logged

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Re: Who is who here to the newcommers
« Reply #4 on: Jun 16th, 2005, 7:08am »
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My name is Matthew and I have been a pest on this board for around 5 months now. I have been made to feel as if I am at home here since the beginning. I am 32 and have had CH for around 7 years. I am happily married to the only woman who was kind enough to take pity on me, Mary is the best thing that has happened to me. She is a great supporter and an even better friend. I have  2 kids that are a pain in my ass to match the pain in my head, but I wouldn't have it any other way. Life is better siince I have found CH.com. I love this place and the people in it.
« Last Edit: Jun 21st, 2005, 5:25pm by maffumatt » IP Logged
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Re: Who is who here to the newcommers
« Reply #5 on: Jun 16th, 2005, 9:18am »
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Im 42, Married, 2 sons, CH as long as I can remember.
I guess there is good from bad here because without ch I would never have come here and started causing trouble. Ok I dont always start it but I do like to stir the pot. There is alot of great people here and there is alot to learn from them.  
 
WELCOME HOME!!! Grin Grin Grin
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Re: Who is who here to the newcommers
« Reply #6 on: Jun 17th, 2005, 9:20am »
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Howdy Y'all!!!
 
I'm Gator aka Mike
I'm 42, married and dad to 3 boys - 21, 18 and 16
I am a Primary Chronic clusterhead and I'm relatively new to the game.  Mine started in November 2003.
I found this website on March 23, 2004 and it and the people here literally saved my life.  It was a dark time, but somehow knowing I wasn't crazy, okay maybe I am crazy, but at least I knew I wasn't alone and that helped.  So did the tons of information and the emotional support of these wonderful people.
 
The best advice I could give you at this point would be to go to the bathroomn, get a beverage, get yourself all comfy and read, read, read.  Knowledge is power.  You are your own best advocate in your treatment and to do a good job, you need to have the right information.
 
Welcome to our little corner of the web.  It sucks that you had a reason to look for us, but if you have CH I'm damned glad you found us.
 
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Re: Who is who here to the newcommers
« Reply #7 on: Jun 17th, 2005, 9:31am »
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Hi! I'm nani. Welcome! I've had CH since 1973. Finally diagnosed in 2000. I'm chronic and have recently found relief with kudzu. This place has been a life saver for me (sometimes literally). Stick around, read, ask questions...you'll find much info and support here.
 
This is me and mooshie, one of my amazing supporters. She's a member here, too.  Smiley
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Re: Who is who here to the newcommers
« Reply #8 on: Jun 17th, 2005, 9:44am »
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Name is Pegg  aka Redd...
 
40 years old, Mother to 2 teenagers who are my greatest supporters.  
 
Primary Chronic with periods of increased activity.  Found CH.com just over a year ago when the years of mis-diagnosis came to an end.  Saved my life as well, as the depression had set in full force and I was ready to take myself out.  I had lost not only my job, but my boyfriend bailed on me as well when he learned there was no cure and this wasn't *fixable*.  (actually I think he's still convinced this is all my imagination and I need a shrink rather than meds.)
 
Only been correctly diagnosed since April of last year but have been suffering this beast for over 13 years by going back through my medical records, and longer if you go back through my dental records as well.
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Re: Who is who here to the newcommers
« Reply #9 on: Jun 17th, 2005, 10:02am »
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I'm Helen, I'm 42, I live in between Nottingham and Grantham in England I have three children, Brid 13, Barney 13 and Jasper 6.
 
I've been diagnosed with CH since September 2004 and I've been in cycle since then. Getting to week 26 was my blackest point personally because it was half a year but I've given myself a kick up the bum since then and got on with things!  
 
I'm a huge fan of O2, its my favourite abortive and works 9 times out of ten for me - I can't recommend it enough.
 
My youngest son, Jasper, was diagnosed with CH when he was three and has now had four cycles (he's 6 now) which is very hard to take. I've not been able to help blaming myself yet.
 
The best thing that could have happend to me was finding this site. I didn't want to live, I don't mean I would have killed myself for one minute but I did not want to live with the pain, and bleakness I felt. Finding this site and the wonderful warm caring people therein has given me the strength to stick two fingers up at the beast and shout "BOLLOCKS" with all my might! laugh
 
My life has changed completely in the past two years. I've met and fallen in love with another sufferer, Paul and we are now intending on spending the rest of our lives together  Smiley  
 
Whilst CH is bloody awful and has been one of the worst things ever to happen to me, it has also directly caused some of the most wonderful things ever for me too. I've made the best friends a person could have, I've acquired a world wide family and a soul mate, someone I love with all my heart and who understands everything about me.. Well except my use of the word "plonker" and my fondness for spotted dick! It's a Brit thing! He even likes marmite! I'm a lucky girl LOL
 
I've had so much love and support from here that I can never ever pay it back but I will continue to pay it forward by helping and supporting every last one of you that needs it.
« Last Edit: Apr 18th, 2008, 11:15am by LeLimey » IP Logged





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Re: Who is who here to the newcommers
« Reply #10 on: Jun 17th, 2005, 7:08pm »
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found this place in aug 2004, not a moment too soon.
 
This place also saved my life....
I was getting too scared to drive anywhere,
and too tired to fight the pains.....
but they helped me find my boots and gave
me the encouragement I needed to take back my life.
 
Just read up and you will find all you really need to do
is ask and someone will find you, they will get you what you need to survive.
 
Me? Married to a sweetheart who gives me more than I deserve....but we made a deal and I try to give him more than he deserves too!!!  
 
I have been having the pains of CH for at least 8 years, and last September I started having about 4 - 8 headaches every single day.
 
I am still blessed though, with the on and off schedule,
 i am still able to work at a daycare with 10 luvable one-year-olds.
« Last Edit: Jun 17th, 2005, 7:16pm by yikes-another-one » IP Logged

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Re: Who is who here to the newcommers
« Reply #11 on: Jun 17th, 2005, 8:03pm »
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I'm 58, hard to believe.
 
I came here in 2000 just wondering if there were any CH sites. EGAD! I discovered that I'm not alone and that there are variations of this horror. I've been pain free since 1991 but can't resist coming here to post a technique I learned. I had no idea how many drugs and treatments existed.
 
I'm single, talk about the old days with other gray hairs while reading the paper and drinking milkshakes at McDonalds. I can't believe it either.
 
I live in western New York State 30 miles from Lake Erie and 75 miles south of Buffalo. It's quiet.  
 
Other than epilepsy, I'm in fairly good shape for an old Swede.
 
I sell some antiques and collectibles on ebay and now and then at shows. It's fun.
 
I don't know what I'd do without all you brain damaged people.  
 
Charlie (who likes his smilies)  
 
« Last Edit: May 1st, 2006, 7:22pm by Charlie » IP Logged

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Re: Who is who here to the newcommers
« Reply #12 on: Jun 17th, 2005, 8:08pm »
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Hi, I'm Bethany, 30 yrs old living in Boston, MA.
 
I've been a member here since December of 2002. This place has done wonders for me since I found it. I have met some wonderful people, gotten great advice, and support. Welcome to the family.  Grin
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Re: Who is who here to the newcommers
« Reply #13 on: Jun 17th, 2005, 8:43pm »
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Whattup!
Eric, 33 yr old faith healer from NY......just kidding! laugh
I am actually a Board Certified Behavior Analyst and a Special Education Teacher. I develop & run home schools for toddlers with developmental disabilities in Early Intervention. I also lecture and train new teachers entering the field.
 
I went 18 cycles episodic and un/misdiagnosed.
1yr ago spring cycle began and went heywire..found this place and wound up getting a proper diagnosis as well as learned how to live life again.
 
My latest cycle never broke and I have become chronic....Doesn't make a difference to me to be honest, in fact less dread because I know what to expect everyday. I was a lot "worse off" when I used to pray for them to leave or questioned when it would end....IT IS WHAT IT IS...for now Wink Wink
 
I have only missed coming to this sanctuary for 8 days and that was while I was on my honeymoon.
 
This place is a godsend and the people here have saved my life and given me the power of knowledge regarding our dreadful condition...
that in itself is the most powerful tool!  
 
If I can give you any advice, it is as follows:  
READ READ READ! Learn as much as you can and try your best to be positive!!
 
Beer is Good!
 
Hugs,
 
E 2
 
« Last Edit: Jun 27th, 2007, 2:00am by E-Double » IP Logged

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Re: Who is who here to the newcommers
« Reply #14 on: Jun 18th, 2005, 8:14am »
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This is me and my wife Barbara and below my daughter Jessica being picked up by her date for the Junior Prom.
 

They are both the greatest Ch supporters in the world.
 
I'm 39 years old. Will hit the big 4-0 this November. I've had Clusters since I was about 15 years old but they were not diagnosed for another 10 years.
 
I am Episodic and always have my CH on the right side. I live in Bucks County, Pa. (Levittown) which is about 10 miles northeast of Philadelphia. I'm an avid Philadelphia Eagles, Phillies, and Flyers fan.
 
I work two jobs in Physical Security. My main job is at a large Pharmaceutical Company and part-time gig is in a Hotel/bar. Both are in Princeton, N.J.
 
Jimmy
 
Edited to add...
Here's a more up to date picture of Me, wife Barbara, and our dog Dustin...watching the Fireworks in Maple Shade, NJ  July 2nd, 2005
 
« Last Edit: Jul 10th, 2005, 2:38pm by Jimmy_B. » IP Logged

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Re: Who is who here to the newcommers
« Reply #15 on: Jun 18th, 2005, 4:50pm »
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I swear I look older in person...
 

uh, by the way, anybody know what comes after 4?  
I'm stuck.
 Grin
 
 
« Last Edit: Jun 21st, 2005, 7:24pm by vig » IP Logged


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Re: Who is who here to the newcommers
« Reply #16 on: Jun 18th, 2005, 5:33pm »
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Hi, I'm Pat, or Patti (aka pattik), and welcome to clusterville. I have had CH for longer than I care to remember, and this site has been a Godsend--not only for all the information it holds, but also for all the humor and friendship that abounds.  Hope you like it here as much as I do. Grin
« Last Edit: Aug 29th, 2006, 9:49am by pattik » IP Logged

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Re: Who is who here to the newcommers
« Reply #17 on: Jun 18th, 2005, 6:15pm »
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Welcome to the madness all  Smiley
 
I found this place a bit over a year ago. After 22 years alone it was nice to know that I was not really alone. Now at a bit over 23 years, 17 of the with completely out of control clusters, it's nice to have someone to talk to that understands. Besides that I have met some of the nicest people in the world. Welcome, hope you find what you need. Fear not, ask, there are no dumb questions! (They may have been answered before, but if you have slow dial up like me you cant quickly look, and some one with DSL will post you the link  Grin)  
 

 
And still a short ugly redneck after all this time!
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Re: Who is who here to the newcommers
« Reply #18 on: Jun 19th, 2005, 1:13pm »
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Hello out there new peoples ! I'm Pam......(cootie of course)......from Ohio......gee I been here since 2000 at least.....mite be longer but I can't get into the archive stuff. Slow dialup. Anyhow.....I am a supporter for Brad and sumtimes entertain the troops here with my ramblings if not annoy them.....depends on my mood. I keep myself sane by bein CRAZY.......well you know what I mean. Brad's been goin thru this ch crap for close to 20 yrs.....misdiagnosed as usual and went the sinus infection/anxiety med route that was all WRONG deal. We have a cool internalist doc now that will work with us on whatever he needs or wants to try.....were pretty lucky there. Brad's outa cycle and skipped one this past fall but then he has went 4 years before. His ch started when someone dropped a hammer on his head from the roof of a garage. He was helpin em put up a big old satillite dish and climbing the ladder when he got the head blast. But we've heard rumors of his great grama that had some sort of seveere headaches many many years ago and would hold a wet washcloth on her temple.....we don't know if she had ch or migraines.....no one seems to know much more about it. (there from the old country and like poka music...hee-hee) Brad's one sister has bad migraines and guess this head deal stuff can run in families with one or the other or both. We have one daughter that's married with 3 kids. I have chronic back problems from horse wrecks when raceing years ago......and an injury to my neck to add to it. Other then that I am just BLONDE. Nice to meet you......welcome wagons ho Pam  Grin
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Re: Who is who here to the newcommers
« Reply #19 on: Jun 19th, 2005, 9:07pm »
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Hi,
 
Kris here.  No pics to show since I haven't taken the time to set up a URL to post them.  It's the only thing I dislike about this board - those damned URL requirements!
 
Trust me - 5' 2", eyes of blue, oh what those blue eyes can do!  Unfortunately, one of them droops a little ever since I got clusters.
 
Didn't meet the beast until the age of 40 - never a HA before then.  Have had 3 cycles now, about 3 years apart - that would make me .... well, never mind.  Cycles last about 10 weeks.  Get great relief from Trex injects, Verapamil and a Prednisone taper.  Last cycle ended last July, which means, if luck is with me, I have 2 PF years to look forward to.  One thing I've learned though, is that the beast likes to fool you - could start a new cycle tomorrow!
 
I'm a writer/graphic designer and married to an architectural photographer.  My only child, Emily, just moved away to start her own life.  I have a wonderful family both nearby and on this board.
 
Hope all the newbies find it as wonderful as I do.
 
Hugs,
 
Kris
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Re: Who is who here to the newcommers
« Reply #20 on: Jun 20th, 2005, 1:10pm »
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Gena - 34
episodic  
Started having Ch when I was 21
misdiagnosed till I was 32
 
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Re: Who is who here to the newcommers
« Reply #21 on: Jun 20th, 2005, 1:52pm »
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>>>>>>>>>>>>>>>>>skidding in, kicking the dust.....
OK, then, Svenn made me do this...........
I'm Cathi, supporter of all who want me, lifelong friends of some pretty wonderful people. Although I am not a direct supporter, nor am I a sufferer, I arrived here about 2....umm, maybe 3 yrs ago, and was instantly hooked!
Happily married for 32 yrs, sometimes my husband thinks I am certifiable-but I am housetrained, so he keeps me Wink We are allowed to move freely about our home, despite the fact that 4 cats run the joint.
My curiosity about this horrendous affliction brought me here, my tremendous respect and a desire to help- even in some small way, keeps me coming back daily!
I have had the opportunity to meet most of my closest friends here at CH.com.and I am looking soo forward to meeting more of you in the not-too-distant future.  
I was fortunate enough to observe one of my friends, as he helped someone with the effective use of 02, and studied his method. Now I can help others..and it works!!!!!!!!! I still have a lot to learn, and a lot to give.
I try never to let a day go by without saying to all here....
PF wishes,
Cathi Kiss  
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Re: Who is who here to the newcommers
« Reply #22 on: Jun 20th, 2005, 4:07pm »
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That's me.  I am 32 yo.  I have had clusters for 14 years.  Did my first three years with no meds.  Finally got suicidal and went to a doc, got diagnosed right away.  Discovered imitrex, thought it was a Godsend.  Untill then I had to ride out every ch.  Finally had something that would kill them, though I was golden!  Smiley  Cycles started getting longer and hits were coming more often and harder.  I was becoming an imitrex "junkie"  felt like a pincusion.  My life was a living hell every cycle.  Got some prevents, verapamill and prednisone, didn't work very well at all.  Got so depressed was going to kill myself, and then I typed, just for the hell of it "Clusterheadaches.com" into my browser and started to read some of the stories and posts here and started crying.  Found out about O2.   Tried O2 but didn't have the correct flow rate, so it only worked about 1/3 of the time.  Tried sansert, worked great on the ch, but almost destroyed the rest of my body.  Then I discovered amerge, got good results as an abortive, worked fairly fast and I would get 4-6 hours of pf time between hits.  Then my ins. co. wouldn't pay for it anymore unless I tried axert and zomig.  Axert worked on 2 CH's and then was inefective.  Have been using zomig and O2 at 15lpm for the last 3 years in conjunction with my new preventive measures:
 
Quote:
My CH treatment
 
20min HOT steamy shower 1 hour before bed
3-6 mg of melatonin and 2-6 mg of time-release melatonin afterwards
Go to bed
Wake up in the morning; take 250 mg of magnesium and 20 mg of fluoxetine (prozac)
Abort with zomig and O2 at 15 LPM as needed.  
 
Also had some good results from alternative methods, but nothing too concrete to rave about yet.

 
Now my cylces are pretty controllable, at least they have been for the last 3 years.  Now I am engaged to  
 

Isn't she the cutest?  Grin
And haven't been happier in my whole life.  Love the folks I've met here, many of them have given me that strength to carry on when I would have rather given up.  Thanks to all at CH.com and especially DJ.  Don't want to think about where I'd be without you guys/gals.
« Last Edit: Jun 20th, 2005, 4:52pm by thomas » IP Logged

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Re: Who is who here to the newcommers
« Reply #23 on: Jun 20th, 2005, 5:09pm »
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    Linda Howell
 
    Chronic clusterhead since 1987
    I was lucky, in that after I dianosed myself I got seen and treated by one the best in this field.  Dr. Kudrow.
 
     I typed CLUSTER HEADACHE into a search engine in 1998 and found this family and knew I'd never be alone in this again.   These people that I have met and known for 6 yrs. now are the most well-informed, frustrating and loving people in the world and we all owe this to DJ who started this web site.
 
     I live in Spokane, Wa. for the moment, but am moving back to my real home in Northern California in November.  I have 7 kids (no.  that is not a typo)  who all live in So. California and  I just got married again last year.  
 
 I'm also computer illiterate so I cannot post a picture.   lol  
 
    Linda
IP Logged

Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
alienspacebabe
CH.com Alumnus
New Board Hall of Famer
USA 
*****




yup. i am. i do. uh huh. you know it hon.

  alienspacelizzie   MzClusterhead
WWW Email

Gender: female
Posts: 1775
Re: Who is who here to the newcommers
« Reply #24 on: Jun 20th, 2005, 7:29pm »
Quote Quote Modify Modify


 
 
This is me....
 
I'm have had CH for what seems like forever. I found this site after my father saw something about cluster headaches on GMA. Since then I've found that this is my second home and second family. My CH used to be "chronic" (2 1/2 year cycles) - I've been PF since January 20, 2004.
 
39, divorced, 2 adult children.  Live in a suburb of Milwaukee, Wisconsin.  
 
WELCOME!!!
 
Lizzie aka alienspacebabe
« Last Edit: Jun 20th, 2005, 7:33pm by alienspacebabe » IP Logged

Not until we are lost do we begin to understand ourselves.
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