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        New Message Board Archives >> 2006 General Board Posts >> My Anniversary
        
(Message started by: Carl_D on Sep 18^th, 2006, 1:09am)

Title: My Anniversary
Post by Carl_D on Sep 18^th, 2006, 1:09am

This week marks 19 years with the beast. When they first started, it was NOT severe, but frequent. It felt like a piece of ice was freezing my eyeball. With every cycle after tha though they got more intense until 91-93 I was convinced I had a time bomb ticking in my head. When I landed a killer job for a music distribution company in Michigan in '94 as customer service manager, inventory, roadstaff - I jumped at it. I found up once I got the that the Michigan Head-Pain and Neurological Institute was just up the way in Ann Arbor. With a killer job, I paid out of pocket for all testing (no insurance) and anuerysm or tumor was ruled out and it was for sure CH. By then, they put me on o2 and Verapamil. Which worked until moving back here for a couple fo years. Tehn went chronic in 98 and it was moe hardcore than ever. Nothing worked. Not Verapamil, Trex, or o2. I lost everything.
Since then, the years chronic were like living in a blender of sorts, but in '99 a friend found this site for me and it gave me some hope. I knew I was no longer a freak, all alone with some unheard of thing that people thought was made up. My family saw this site and freaked. That was when they realized just how bad CH was. (My brother knew, he drove me across the river to the ER while I rocked in agony in the passnger seat losing my mind).

I've gone through alot since these things started when I was 17... and I never for the life of me had a clue that this would the very thing that would change the course of my life to come.

And here we are. No sleep for days again, I have to work tomorrow and am whiped. Now... to grope for sleep while trying to avoid what will interruopt it for sure.

[smiley=worried.gif]

Peace,
Carl

Title: Re: My Anniversary
Post by roy21302 on Sep 18^th, 2006, 10:41am

Carl,
I have read many of your postings on this site and you are sure going through a very bad time at present, and I know you probably feel you can see no end to it. I to had a similar experience and lost my dream job when I went Chronic, I was at the peak of a career I loved and forced to retire early, I thought I had lost everthing and my world had crumbled. The CH was the only thing that remained constant, gradually things have improved, and with support of my wife and friends life is not too bad now, even with the beast loitering around. Hang in there Carl there are so many people on this site who think of you daily, you have many friends on this site, ride this beast show it that it can't beat you and you will come through to make music and all of us will be able to go out and buy your music and say hey we know this guy --he's Carl from CH.com. Hang on to that guitar Cheers Roy [smiley=thumb.gif] [smiley=thumb.gif]

Title: Re: My Anniversary
Post by Tiannia on Sep 18^th, 2006, 2:24pm

Carl,

I know how hard it has been. I was lucky to find this site early ( I guess) after my doc said well it sounds like cluster but it cant be because you are not a man. Since then I have been able to get a grasp on what this is. Ways to explain it, without confusing people. And to have the support here because I felt like I was going to lose everything. My job, my family, my life. But I am here, I am dealing and on the hard days I know that everyone here understands.

You will make it thru. Do what you can. Everything happens for a reason. I know that it is hard to see when you are in the middle of it and feel like everything is turned against you. But we are here for you. We love you and will always be here for you, my brother in pain and love.

PF Wishes, Tia

Title: Re: My Anniversary
Post by brewcrew on Sep 18^th, 2006, 2:53pm

Carl - I don't know, and can't presume to say that I know what you have gone through. It is a testament to your fortitude that you are still here and able to tell your brothers and sisters about it. I am in awe.

A suggestion: Have you ever tried Sansert? Generic name is methysergide maleate. It has saved my life twice, most recently on Aug. 21. I had gone chronic in mid-January (2nd time), and the headaches became intractable (untreatable) at the beginning of August. I finally figured out that I could still get Sansert either through a compounding pharmacist or through an internet-based Canadian pharmacy. Aug. 21 is the date that it started working for me, and I have not hit the oxygen bottle since. If you want details, feel free to PM me.

Bill

Title: Re: My Anniversary
Post by unsolved1 on Sep 18^th, 2006, 8:04pm

damn Carl :-/ that sucks !! I feel your pain. August made it 18 yrs for me and October will make it 6 yrs I've been ChRoNiC !! We're in the same boat :-/

Hang in there !!

UNsolved

Title: Re: My Anniversary
Post by Carl_D on Sep 19^th, 2006, 10:51pm

on 09/18/06 at 14:53:37, brewcrew wrote:

I was prescribed Sansert, but 3 pharmacies could not fill it. This was a couple of years ago. From what I understand it is pretty expensive stuff and ... it is something I need to check into again since it has been awhile.

I will be honest... I have no clue how I made it this far. However, I accredit this site with changing my life. Without some of the peeps here I WOULD be dead by now and with all that has transpired, probably should be by now.

One thing that still kills me is when people say, "I don't know how you do it."

Um, I wasn't really given a fucking choice in the matter now was I?
I'm just amazed to think it has been 19 years since I'm not a very strong swimmer.

Peace,
Carl

Title: Re: My Anniversary
Post by tanner on Sep 20^th, 2006, 12:06am

OK, so I will not say "I don't #########do it"

Just keep doing it! A single missing cog can f##k up the whole uphill climb.

We need ya Bro! Rock On........Tim