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Topic: Do you remember? (Read 282 times) |
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cosmicfunkfather
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Do you remember?
« on: Oct 24th, 2007, 8:51pm » |
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Remember the first time your neurologist diagnosed you for ch? I remember walking in her office and wife had to speak for me cause I was in the cycle. It was about 3 years ago. She took a look at me and said "I have good news and bad news!" so I told her, "give me the good news first". She said, you have cluster headaches." So I'm thinking ok, that's good. I don't have cancer or a brain tumor. So I asked her, what is the bad news? she said " There's no cure for ch." This ch sucks!!!
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To not know is bad, To not wish to know -- is worse. 
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Rosybabe
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"Too much of a good thing can be wonderful!!
 
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Re: Do you remember?
« Reply #1 on: Oct 24th, 2007, 8:53pm » |
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yes...it does...  ...but we are all here to make you company 
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DennisM1045
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One wave at a time!
 
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Re: Do you remember?
« Reply #2 on: Oct 24th, 2007, 8:54pm » |
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It certainly does suck. I can remember it like it was last June! In fact it was last June  I went 12 years undiagnosed before that. I coulda kissed the guy. I already knew what CH was by that time but it was good to have a diagnosis.
-Dennis-
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Dancing the dance since 1995 ... Family member since 2007 ... No longer alone
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phil_h
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one day at a time , one headache at a time.....
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Re: Do you remember?
« Reply #3 on: Oct 24th, 2007, 9:04pm » |
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I remember it too well..........  
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Kevin_M
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Re: Do you remember?
« Reply #4 on: Oct 24th, 2007, 9:16pm » |
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on Oct 24th, 2007, 8:51pm, cosmicfunkfather wrote:
Unanimous here, bud. This site helps greatly. It can be the times are really tough board, feel free to lay it out and give a hollar. We're all here to help 'cause we know and care.
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rolo65
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Ya, I remember he pulled out the PDR and said does this sound like your symptoms? That was before I became a chronic clusterhead.
Rolo..
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Jonny
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Give me a shovel Ill dig my own grave!
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Re: Do you remember?
« Reply #6 on: Oct 24th, 2007, 10:28pm » |
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Sure do, I was 28 and told him the shit I had been going through since I was 12. After sifting through the MRI's , Cat scan's and x-ray's , he said......you have CH.
45 minutes later I logged on to this site after a google search, it was so scary even for me because I didnt know WTF I was going to read here.
What I read on the front door of this site that I was not alone, DJ was a man I was going to meet!
Ive met him several times now and I think hes gay for me........LMMFAO
Even though my HA's stopped two years ago, eight years ago I was ready to blow my head off the day that I found this website.
What more can I say?
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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JDH
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We will get by, We will survive!
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Re: Do you remember?
« Reply #7 on: Oct 24th, 2007, 10:59pm » |
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After hitting the wall with my gp I got in to see a neuro in 1985 and told him what was happening. He said "You're having Cluster Headaches but we don't know much about them" He wrote me a script for Lithium and Codeine (which did nothing) and sent me on my way.
When I realized this guy couldn't stop them either I figured I was screwed....and I was right.
Jim
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9-11-01, to remember is to honor.
It's not what you know, it's what you can prove.
ECH established 1985
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Linda_Howell
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Hearing is one thing. Listening is another.
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Re: Do you remember?
« Reply #8 on: Oct 24th, 2007, 11:06pm » |
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In 1987 after 3 weeks of this horror I opened up one of my medical books, looked up headaches and found my symptoms and diagnosed myself.
Saw Dr. Kudrow within a month, got diagnosed properly and like JDH, knew I was screwed.
Until I got my first computer and typed cluster headaches into a search engine. That was 9 yrs. ago and I now have a whole different attitude.
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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rolo65
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on Oct 24th, 2007, 10:28pm, Jonny wrote:Even though my HA's stopped two years ago, eight years ago I was ready to blow my head off the day that I found this website.
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Load the 45, stare at it, think about it, and stare at it some more! Then I got the idea to just get drunk and get a really big bag to zip myself in with a CO2 tank so my wife could get rid of the evidence and collect on the INS. What the hell there’s always the rope I bought for the end also.
I don’t talk about it to anyone but my wife though. If I did the cops would sanitize my house like they did to my brother in-law when he went into treatment for alcohol.
Now a days I just keep the 45 locked up and think of my 4 & 6 yr old and what it would do to them. My eyes are going, but I’m staying!
PFW to all!
Rolo..
PS; I still have all of his guns at my house. 
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| « Last Edit: Oct 24th, 2007, 11:20pm by rolo65 » |
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Wayne
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RedBull Rules!!
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Re: Do you remember?
« Reply #10 on: Oct 25th, 2007, 1:34am » |
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Oh Yes, I was on my 4th cycle,getting whacked 5 times a day and also staring down the barrel of a gun. The neuro was my last resort although I was quite convinced that I was going to die in anycase, nothing that hurt so bad couldn't be fatal.
Walked into the guys office, talked for about 15 minutes and heard those magical words " I suspect that you have cluster headaches, the bad news is that you're going to live with them for a long time, the good news is that they're not fatal and they can be controlled". He was right.
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A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort.
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sandie99
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Re: Do you remember?
« Reply #11 on: Oct 25th, 2007, 2:40am » |
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Yes, I remember it very clearly. I got my diagnosis on Jan 1, 2003. I wasn't quite sure what the neuro would say, but after losing my father and uncle to braincancer, everything else would be great...
Naturally, I found my way here months later, because the neuro who diagnosed me was, of course, Finnish, and I only learned this disease's English name after a discussion I had with one of my professors (who had had ch as well and so had her brother). I goodled it the next day at university's computer and found this site.
Sanna
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| « Last Edit: Oct 25th, 2007, 2:41am by sandie99 » |
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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BarbaraD
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Hugs to ya
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Re: Do you remember?
« Reply #12 on: Oct 25th, 2007, 7:11am » |
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Oh yes, I remember that doc (at Scott and White) sitting by the bed and explaining about CH and that there were things they could give me, but no cure and sometimes things didn't work and blah blah blah....
Then after I went chronic in 97 - almost giving up hope - but in 98 after my son hooked up a new computer with the "Internet" (something that terrified me), I found a little white box on the top and typed in CH and found this site and THERE WERE PEOPLE HERE WITH CH. I'd found CLUSTERVILLE!!!! Life hasn't been the same since.
People like Kip, Bob G, Bob P, Margi, lcbob, Drummer, Linda H, Phil, that crazy Italian kisser and of course DJ, and about a dozen others became my lifeline to sanity and got me thru some long battles with this horrible thing thru humor, butt kicking and just being there.
Oh yes, I may forget a lot of things, but.....
Hugs BD
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What don't kill ya, Makes ya stonger!
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Tiannia
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Life does not apologies......
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Re: Do you remember?
« Reply #13 on: Oct 25th, 2007, 1:40pm » |
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That took years.... I had the honor of starting CH as a chronic, but I did not know what the f it was. AFter 3 months of getting hit 6+ times a day and having it be like clockwork, I went to my 3rd doctor. I remember she was the first doc that said "It sure sounds like Cluster Headaches, but it cant be cause you are a women." I got back to work and googled. I found this site after that. It was in 2003 and on my birthday. What a great birthday present.
2 years and many many doctors and medications later, I saw a neuro who understood and wanted to help. He walked in to the room, I was getting hit right then. I had paperwork from here and OUCH to show him and my HA journal with me. The first words out of my mouth was that I was tired of doctors telling me that it is all in my head and not as bad as I am making it out to be. He looked at me, and said, "I know that you are in a lot of pain and I am pretty sure what it is. But lets go over what you brought me and get you some help." I started crying right there in the office. He brought in an imitrex injection and we got the hit that I was having right there handled, and then we talked. I left there feeling so realieved that I was not going insane.
Oh yeah I remember and if it was not for this site, I dont think I would have ever gotten diagnosed.
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| « Last Edit: Oct 25th, 2007, 1:46pm by Tiannia » |
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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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echo
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Chronic and still alive --- I Win!
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Re: Do you remember?
« Reply #14 on: Oct 25th, 2007, 1:51pm » |
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It was about 11 years after my 1st experience when the Neuro said I had CH. (84)
Then he started me on a shit load of nasty side effect aborts that did little but add another shit sandwich to an already full plate.
Found a new Neuro about 8 years ago who has helped.
My GP is fantastic as well.
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| « Last Edit: Oct 25th, 2007, 2:11pm by echo » |
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
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seasonalboomer
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If I think hard enough maybe it'll go away.....
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Re: Do you remember?
« Reply #15 on: Oct 25th, 2007, 2:26pm » |
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I don't think my neuro ever told me for sure that I have CH. My only reason to see him was that I wanted to make sure I didn't have a brain tumor or something. I knew what CH was through my Dad's horrible CH's -- I knew if it wasn't a tumor, it was going to be CH.
After the neuro told me my brain was okay I went about my business, just gutting them out. Until one day several years later I was ramped up to about a K-9 and had to pull over in my car. Realized I was about a 1/4 mile from my nuero's so I drove, walked in with sunglasses on and asked for someone to please help me -- that I was in the middle of a very severe Cluster Headache (Tears were streaming down my face). The girl at the front desk asked what kind of health insurance I had. I told her BC/BS and she said they didn't take that. I told her I would pay cash on my credit card -- just please get me an injection, anything. They said, sorry, we can't help you.
I stumbled out to the parking lot and swore I would never say a good word about that S-O-B the rest of my life. (Demas Neurology - Charlotte, NC).
Scott
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totka2
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Oxygen
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Re: Do you remember?
« Reply #16 on: Oct 25th, 2007, 2:27pm » |
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Yes, I do. I was un/misdiagnosed for 14 years. Professor Jelencsik diagnosed my CH in 14 seconds.
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http://www.clusterheadache.hu
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Tiannia
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Life does not apologies......
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Re: Do you remember?
« Reply #17 on: Oct 25th, 2007, 2:43pm » |
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hehe I remember one neuro who told me that there was no possible whay that I could have CH. He instead diagnosed me with Chronic Cluster-type HA. I asked him what the hell that meant. He said that by the very definition of the name that CH meant that they group together in clusters. And that because mine has been going on for almost 30 months without a break in them more then 14 days at a time, they could not be clusters. 
I told him that there would be a bunch of people form this site who would love to know that there is no such thing as chronic CH and that they where only having cluster-type HA's. Then I told him that I was German and maybe I was just having a really long ass cycle and walked out. 
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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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