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Who is who here to the newcommers (Read 115549 times)
E-Double
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Re: Who is who here to the newcommers
Reply #100 - Jan 19th, 2006 at 5:34pm
 
upnover wrote on Jan 19th, 2006 at 11:28am:
Hi
I'm new here but have been a ch for about 14yrs..
35yrs old married with two great girls 18mths and 7yrs old.

I wish I had found this site a long time ago but better late than never.
image38.webshots.com/39/2/74/37/320027437hmMeej_ph.jpg


There ya go Tom! Now we can see ya.
Sweet Jeep!
Eric
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I can't believe that I have to bang my Head against this wall again. But the blows they have just a little more Space in-between them. Gonna take a breath and try again.
Edoubleitk Edoubleitk1  
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upnover
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Re: Who is who here to the newcommers
Reply #101 - Jan 20th, 2006 at 10:23am
 
Thanks E
my head and that steering wheel have a few yrs of history if you know what I mean?
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Tom&&
 
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Re: Who is who here to the newcommers
Reply #102 - Jan 20th, 2006 at 10:37am
 
Welcome, tom. Still can't see the pic, though...
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upnover
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Re: Who is who here to the newcommers
Reply #103 - Jan 20th, 2006 at 5:40pm
 
try this for the pic
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you can't really see much but its really the only pic of me I have
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Tom&&
 
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Re: Who is who here to the newcommers
Reply #104 - Jan 22nd, 2006 at 4:58pm
 
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Here I am talking to another CH'er on Skype. I've had these damn things since May of 2000. I was diagnosed very shortly after I that by my GP. I started out being episodic, and went chronic almost a year ago. At first, there wasn't much that worked for me, but after this last cycle started 22 months ago, I found out trex injections work, and O2 also.

I've decided that I can't let this run my life, or that's all my life would be. I deal with it and move on. There's always the thought in the back of my mind, knowing right when the next hit is coming. But I keep it there, and when they come, they come. Not to say I'm not a cursing crying idiot when I'm getting hit. But then it's over. And they always end. Always.

Chris

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Re: Who is who here to the newcommers
Reply #105 - Jan 23rd, 2006 at 2:09am
 
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hi im a newbie , this is me with my beautiful neice , i have 2 children a son aged 16 and a daughter aged 8 , thay are my world .
i feel as though i have found an oasis here , wish none of us had to suffer this , but i dont feel alone anymore , thankyou all .
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Re: Who is who here to the newcommers
Reply #106 - Jan 29th, 2006 at 9:18am
 
Hi  my name is Michael (from Switzerland) and I am new to this 'global village'.... and new to this CH, just over 6 month    trying to get used to all this......  and gratefull to you all for the usefull information and the support I got when I joined a few weeks ago......

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my two boys... and  MOM.....you and your MOM are my lifesavers....... and me......
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the way I see the world when I am PF........
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and the way we have it at the moment ........
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« Last Edit: Feb 26th, 2006 at 8:34am by wildhaus »  

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Re: Who is who here to the newcommers
Reply #107 - Jan 31st, 2006 at 11:05pm
 
Hello... new here.  Started a thread earlier today, but this seems like a good place to introduce myself again.
My name is Eddie, I'm 25 and have had CH since '01.  In fact, I feel one coming on now.  I live in L.A., CA, and feel that I'm learning a lot on this page, and look forward to learning more.  I'm gonna try to put a pic in here, soon as I figure out how to do that...

...couldn't figure it out, so in the meantime just use your imagination....
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Richr8
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Re: Who is who here to the newcommers
Reply #108 - Feb 1st, 2006 at 10:09am
 
Hi all!  I'm Rich from Tucson AZ.  I'v been a sufferer since 1992 and found this CH oasis about two weeks ago. Episodic with 12 week annual visits from the beast.  I was recently divorced fom my wife of thirty five years, so I was  up against this one on my own, that is until I found this place and all of you wonderful folks .  I really think you saved my life.  I learned so much here and found a connection that I truly needed, it gives you that little bit to hold on for.  The wife and I have raised four wonderful boys and look at ours as a complete, and not nessarily as a failed marraige and wiil one day soon be able to continue on as freinds.  My boys and I have a great rlationship, but the timing in all of our lives right now and their ages, (18-27) have us in different places at this time. My current cycle is ending, but I will remain here to support my family of clusterheads now, and forever.

Love you guys,

Rich
/Richr8

P.S. E-double was kind enough to post pic in the post below.
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« Last Edit: Mar 9th, 2006 at 6:25pm by Richr8 »  

pf wishes,&&&&Rich
&&&&&&
...because yesterday is history and you never know what tomorrow will bring.
&&"Med free"- A few seeds and lots of O2-LG but not great.&&
 
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E-Double
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Re: One more try on the pic!
Reply #109 - Feb 3rd, 2006 at 10:36am
 
Richr8 wrote on Feb 3rd, 2006 at 9:26am:
i33.photobucket.com/albums/d83/E-double/Rich8.jpg


Hey Rich!
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I can't believe that I have to bang my Head against this wall again. But the blows they have just a little more Space in-between them. Gonna take a breath and try again.
Edoubleitk Edoubleitk1  
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FramCire
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Re: Who is who here to the newcommers
Reply #110 - Feb 3rd, 2006 at 12:20pm
 
Hi, I'm Eric and I've been around for a few months.  I'm in my mid 30's and I am a stay-at-home dad.  I'm originally from Massachusetts and now live in Missouri.  I have had CHs since Fall of 2004 (which I believe was my payment for the Sox winning the Series). 

Anyway, if there is a E-Double fan club, I'd like to join.  Along with many others here, he has been ahuge help and is the main reason (outside of the person who runs this site) I sleep 5-6 hours a night right now.  I used to work in early childhood special education but now (as I said before) I stay at home with our 2 kids.

Here are my 2 boys. 

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Here is a picture of me at Game 4 of the 2004 World Series.  It was my 1st day without HAs after my first cycle.

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« Last Edit: Feb 3rd, 2006 at 11:06pm by FramCire »  

You've overstayed your welcome since the day we met but it doesn't seem to matter to you.  No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
 
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Richr8
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Welcome!,and sign me up..
Reply #111 - Feb 3rd, 2006 at 1:53pm
 
.. for the, "E-Double" fan club as well.  Eric(E-double) along with many other here got me through somre really tough times too.  It's truly amazing how much advice and comfort you'll find here.  Really a great bunch of folks willing to help and share.  Take the time to vist all of the links and read all that you can.  Not everything works for everyone and you will pull together odd combinations of things for you CH toolkit, and best yet, someone is always here to listen. 

Wishing you pfdan

Rich
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pf wishes,&&&&Rich
&&&&&&
...because yesterday is history and you never know what tomorrow will bring.
&&"Med free"- A few seeds and lots of O2-LG but not great.&&
 
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Jesus_Loves_Darwin
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Re: Who is who here to the newcommers
Reply #112 - Feb 6th, 2006 at 8:07pm
 
31 year old male.  New to the site as of this morning.  I can't beleive these things are real.  Had my first cycle in Feb 1998, (undiagnosed), the 2nd in Feb, 2003 (diagnosed & treated with imitrex) and the 3rd started 3 days ago.  So much for being a month for love.....Now I'm dreading going to sleep tonight, especially knowing that the one thing that usually helps me sleep (2 pints of Guinness) could be a trigger for the pain.      

I've also been thinking about all of the recreational hallucinogens I took in my early 20's and if they are somehow coming back to haunt me.  Could this be a cause of the CH????   In addition to these mind altering substances, I was on Zoloft for about a year and about 30 days ago, stopped taking these.   Until Friday I have felt great with a good diet and daily exercise....

Please help me understand what is causing this pain, and what can be done to make it stop.....



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Re: Who is who here to the newcommers
Reply #113 - Feb 6th, 2006 at 8:17pm
 
Hi Jesus_loves_Darwin

Don't know quite what to make of your moniker, but welcome.  You might try posting your story as a new topic introducing yourself.

There's much to be learned here - about the syndrome - and its various treatments.

There are even quite a few who would tell you that your drug experiments of a few years back might have helped delay the onset of this disease.  Read all you can.  Help is here - as well as the greatest group of understanding supporters anywhere.

Hugs,

Kris
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I'm a small woman in small town being chased by a VERY BIG BEAST!
 
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Re: Who is who here to the newcommers
Reply #114 - Feb 6th, 2006 at 8:22pm
 
Quote:
I've also been thinking about all of the recreational hallucinogens I took in my early 20's and if they are somehow coming back to haunt me.  Could this be a cause of the CH????  


I doubt it.... Check here Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

This site was built by some dudes that come to this site.

Welcome aboard....sorry you have to be here my friend!!
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Re: Who is who here to the newcommers
Reply #115 - Feb 7th, 2006 at 9:45am
 
Hi my name is matt and i am a chhead. I just started my first cluster in mid December 2005 i did alot of research for 3-4 days and figured that i had ch's. went to pcp/doc and to not influence his decision i played dumb . guess what he diagnosed me w/ ch i guess i got lucky ,well not really, I have ch's. I am on hour three of what started out as a kip 8/9 and have been fighting mini ch's since 4:00 p.m. est yesterday, 2 fiorocet in my blood, hot shower, sitting in front of puter rocking w/a cold  towel on my neck. lol and here i am letting everyone know me. Sorry for the book thank's for the site. see everyone soon
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SmuTTy
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Re: Who is who here to the newcommers
Reply #116 - Feb 7th, 2006 at 5:29pm
 
hi im Andy 34 from scotland
ive had CH for abt 8yrs now but i must admit i thought i had it bad until i read some of the posts. im married with 4 stepdaughters and a son and im so lucky to have my family they really do help me just by bein there, they dont do anything for me wen ive got the headaches but they r there wen theyve gone and for that im so thankful. i dont really know wot to write at the mo as im knew to this and soz but i haven't got a pic of myself. im currently suffering a CH attack at the minute. ive been prescribed sumatriptan 100MG tablets and they do work the only trouble i have is that the CH happen so quickly that i take normal pain killers at the start of 1 hopin that it is a normal headache because im scared of running out of my sumatriptan then its upon me and god do i feel it ive started bashing my right temple against my fist at the mo but again im worried it will get worse or progress to even more bashing. dont know if i should of written all this here and said wot i have.

SmuTTy
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Jonny
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Re: Who is who here to the newcommers
Reply #117 - Feb 7th, 2006 at 6:04pm
 
You did just fine, Smutty....have you tried oxygen?
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LeLimey
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Re: Who is who here to the newcommers
Reply #118 - Feb 7th, 2006 at 6:07pm
 
Hiya Smuts,
Come down on the board and start a new thread so we can help you properly instead of it getting all caught up on this thread.
There is ALOT we can do and suggest to help you, starting with O2 as the King has said and also.. imigran tablets?! We need to talk! That is so not what you need!
Let's get you sorted ASAP ok?
Helen
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Re: Who is who here to the newcommers
Reply #119 - Feb 9th, 2006 at 11:35pm
 
Hello,
My name is Lance. You may have seen a few posts from me in the last few days, and wondered who I am. Ok, here goes.
I was finally "officially diagnosed" chronic CH less than 5 years ago. (sorry, dealing with a hit as I write this, so mind not up to speed) Anyway I had gone thru hundereds of doctors over the years, trying to find one that knew something about HA. Finally I made a trip to the local emergency room, and found an ER Doc who actually knew how to abort an HA. What a shock.

Some of the worst diagnosis I have had... One doctor made me wear a neck brace for 3 days!! I did it for 2 days, because I had no idea, but since it had no effect (go figure), I stopped wearing, and cancelled the Physical therapy that he also scheduled. I had one doctor tell me that headaches do not get as bad as I described, and walked out on me. Many, Oh so many just prescribed all the usual pain killers. I was accused in the ER once that I was looking for drugs, and they even sent a nurse in to test it by asking if I wanted a morphine shot.  When I screamed at her that I didnt want the damn morphine, and to keep the shit away from me, they suddenly became interested in helping me.

I am a Computer Repair Technician, a digital artist, outdoorsman. Not quite your typical geek. (I post my picture on my website at Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register )
I have been described as "too honest for my own good", by my customers. I am known for my smile, and many of my customers still have no idea that I have CH. I did share Simon's letter with some of my regulars, since they know I have headaches, but not how bad.

I hope this gives you a little insight to who I am. The artwork I display on my website will also give you some more insights.

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« Last Edit: Feb 10th, 2006 at 11:17pm by Dragnlance »  

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WWW Dragnlance  
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Re: Who is who here to the newcommers
Reply #120 - Feb 14th, 2006 at 2:49pm
 
Hi all, my name is Carl and I’m new here.

I can’t believe that this problem I’ve lived with for the past 20 years is actually a known medical condition.  I’ve been misdiagnosed every time, as doctors did sinus x-rays and CT scans, only to find nothing every time.  I’ve also been seeing a chiropractor every 2 weeks for the past 10 years, falsely believing that the relief I got after several weeks of intense adjustments was actually curing the problem.   

I’d been free of the headaches for about a year and a half, but when they started again around 6 weeks ago, I really got mad and determined to finally find out what was really going on.  I finally went to a neurologist and found the information about cluster headaches on his web site.  I was shocked!  Everything mentioned fit me to a tee. 

My history:

40, male, married, 2 kids in college.  Live in Michigan

CH’s are always on the right side of my face, behind the eye, with pain in back of neck and top of right shoulder.  Right eye waters. Right nasal passage completely blocks up.  Severe attacks will actually cause my body to twitch involuntarily when I get the ice pick stabbing sensation in the back of my eye.

CH cycle always starts in Dec or Jan and lasts 4-6 weeks.  Remission time typically 1 or 2 years.

CH always starts in the evening when I go to sleep.  1-2 times a night.

Sure fire triggers.  Alcohol, smelling perfume that contains Orace root, oxygen deprivation.

Things that have worked for me to abort the CH
–      HOT shower on neck while stretching if done in the first few minutes.
–      Working out until almost totally exhausted.  Increases oxygen level in bloodstream.

Drugs I’ve tried
     Flexeril 10mg (because I thought the cause was muscle spasms) combined with Vicodin 7.5/750 (I’d use a double dose).  If I got lucky the pain would be masked a little bit, but this generally didn’t work well.

     Recently my neurologist put me on Prednisone 20mg.  This immediately stopped the attack. However, as the dosage was reduced the attacks came back.  My side effects were – insomnia and a change in my voice at first which has since returned to normal.

First CHs I can remember were my senior year in high school and would always be triggered during swim team practice.  My theory about this is oxygen deprivation due to breathing the heavy layer of chlorine gas on the surface of the pool was the trigger.  I eventually had to quit the team because of the headaches.

The next recurrence of CHs happened approximately 11 years later, after I was involved in a bicycle racing accident.  I went over the bars at approx 30mph and into the payment.  I was unconscious for 15min.  Suffered a severe concussion (the helmet saved my life!) and completely tore all connective tissue from under my right shoulder blade and back.  It took me about a year and a half to heal physically.  The memory problems caused by the closed head injury took much longer to overcome, but my brain “re-wired” and my memory is better than ever now.

From the time I had my accident until yesterday, I firmly believed that the headaches I was having were due to scare tissue and muscle spasms in my right shoulder from the racing accident.  Now I believe that the CH’s are due to the head trauma that I suffered in the accident.  This gives me an entirely different way of attacking this problem.  I finally feel informed and empowered about this problem and will defeat this beast.

I just put new windows in my house this year, so the place is sealed up pretty well.  Little fresh air gets in or out.  I now know why using my wood burning stone to heat the house was triggering an attack.  It is because the stove is consuming the oxygen in the house which is sealed up like a drum.  As soon as I open a window to get fresh air in or I go outside for 5-10 minutes the CH attack subsides. 

For me, aside from the triggers of alcohol and perfume, I believe my triggers are all related to air quality (or should I say the lack of it).  I have replaced the air filtration unit on my furnace, shut down the wood burning stove, humidified my house better, and last night for the first night in 6 weeks I slept like a baby with no problems.

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glcdawg
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Re: Who is who here to the newcommers
Reply #121 - Feb 19th, 2006 at 10:31am
 
Hi, everyone i'm 39 and just found this awsome site.Its great to know that i'm not alone in my private hell. Hope to get to know u all soon. ps-thanks for being there.
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Re: Who is who here to the newcommers
Reply #122 - Feb 19th, 2006 at 4:17pm
 
Welcome Carl and glcdawg!

You are home now.  This is the place to be to get support and give support, we are all rowing in the same boat.

Wishing you PF times.
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Jazz Wink&&&&Madness is proclaimed by society’s inability to accept its own infallibility
 
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FKD
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Re: Who is who here to the newcommers
Reply #123 - Mar 1st, 2006 at 9:08am
 
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hello, I am Kai-Ta,Feng , I've had CH since 1980,Finally diagnosed in 1999, this cycle been from 2/5/2006 to now, I took Prednisone Acetate Tablets 15mg*3/day.It seems worked.

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Re: Who is who here to the newcommers
Reply #124 - Mar 5th, 2006 at 9:43pm
 
painted shadows over
night's shadows
shining pain glistening, writhing in my rain
covered streets witnessed
sodium lamplight listens to muffled cries
resist and fight
red caps full of bitter reminders
The gray is getting paler now
with each hot blade inching through my head
sleep the good sleep
don't look up at night
it's up there somewhere; don't call it down
it comes when you look there
slips away when you resign
night the good night
head through the pillow
head through the wall
the painted walls
painting shades over
the high, long pain.

From a CH diary, from a while ago, from a currently painless man.

I didn't know how not alone I was. I guess there is some comfort in the discovery that I may not have a tumor burrowing in my matter...but I, as you, suffer alone.

Through this however, we can be better.
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