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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Just a newbie introduction
        
(Message started by: Baked on Sep 23^rd, 2005, 12:01pm)

Title: Just a newbie introduction
Post by Baked on Sep 23^rd, 2005, 12:01pm

8)Hello all, My name is Carl and I have also been given the gift of hell. I just wanted to say I feel for all and appreciate knowing that I am not the only one with the beast beating me down. I wish I could talk more but I really worry about my wife, I dont think she can take anymore of this crap. Emily and I have been together since 1992 and life is awsome until the beast comes out to play. Well I will talk more later. thank you all for being here I will tell Emily that I found this site today. :P

Title: Re: Just a newbie introduction
Post by LeLimey on Sep 23^rd, 2005, 12:06pm

Hello Carl, looking forward to talking to you more, post about more about you and your ch when you have time.
There is a lot of help and advice we can give, we just need to know what meds you are taking, what you have already tried etc.
Hello Emily too!! You have the hardest job I know being a supporter but here you are valued beyond rubies. I odn't know where any of us would be without our supporters.
There's a lot we can do to help you cope and a hell of alot of supporters post here too, we will all help but there are some terrific supporters you can talk to as well who will really help you get to grips with it and make time for you too!
Welcome to you both
regards
Helen

Title: Re: Just a newbie introduction
Post by Kris_in_SJ on Sep 23^rd, 2005, 3:38pm

Welcome Carl (and Emily).

As Helen said, tell us more when you get a chance. You'll never find a more supportive and helpful group of people. Be sure you have Emily look at the supporters' section. Being able to chat with others about what she's experiencing can be invaluable to her and you.

PF Wishes,

Kris

Title: Re: Just a newbie introduction
Post by Baked on Sep 23^rd, 2005, 5:07pm

Hello all,

Wow, what a group. Okay to start I came home from Desert Storm with this gift in 1990 after spending 13 months in the sand. The Navy experimented with multiple pain meds, then CTscans, MRI etc. After three years they came up with a diag of CH and fed me Midrin, (no effect) but forced to take it or else, so I did and suffered. I began to eat Tylenol ES like candy and would even make a paste and swish it around my mouth. After that I just found a corner or secluded area to be in my place of pain and near death feelings. I did this for 2 years without anyone knowing. In 1992 I met Emily in the Navy and we got married along with the CH (poor women she never knew what she was in for, neither did I) Well we moved to Sicily and they started up really bad there and I went through the good ole Navy crap again until a doctor said hey you got CH try DHE45 next time you cycle. This doctor would have a bag and shot ready in the Naval base Hospital just for me. Love them guys for that. Along with that stuff they also gave me narcs (I hate nars they make it worse for me, instead of 2-3 hours of oain narcs make it go 8+. After Sicily we came here to CT and a doctor (civilian said hey try this Imetrix Inj) I thought he was nuts. After the first shot I was hooked. The only problem is when the cycle is bad I suffer like the rest of us and it just sucks and I feel like I'm getting weaker and maybe cant handle another round. The lastest cycle is still in and I think the doc screwed me up. Listen to this. This is all in the last 45 days in chronological order:

Predisone (massive dosage for 2 weeks)
Verapimil 2xday
DHE45 inj
Vicodin
Imitrex inj
Depakote
Topamax

What the hell I almost OD'd on Sunday

Okay Emily's home write later

Title: Re: Just a newbie introduction
Post by Kris_in_SJ on Sep 23^rd, 2005, 7:42pm

OK Carl ...

I might be wrong on some things, but listen closely.

Prednisone in max doses on a taper will probably help you. In fact, most would recommend it for a few cycles - not good taken over the long haul, though.

Verapamil taken at fairly high doses (480mg/day for me) is good as a preventative, though it takes about 7-10 days to show affect. By this time you're weaning down off the Prednisone and the Verap is kicking in. Sounds good, right?

However, they've also got you on Depakote, Trex and Topomax! No wonder you almost overdosed! And, lose the Vicodin - narcs cause rebound headaches and can cause dependency. They don't do squat for CHA's, but make you dopey and sleepy, so you can become dependent without relief.

Please print out this article and talk with your doc about it. You might also want to seriously check out the link on oxygen to the left.

http://www.brightok.net/~mnjday/chtherapy.pdf

Keep checking in. Hugs to you both,

Kris

Title: Re: Just a newbie introduction
Post by lionsound on Sep 24^th, 2005, 9:32am

Hi Carl,

Welcome! You'll find that the added bonus of this place for support is a tremendous help. Support is by far the best med around. :)

You don't sound happy happy with your current treatment. If it's not working for you, talk to your doc or better yet, get a NEW one. Connecticut has piles of neurologists. You desreve proper care.

Have you ever tried Oxygen? read this:
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
it is certainly worth a try and although you need a script for it, it doesn't come with all the sdie effects of medication...it's just air! right now it's one of the few things I can use becuase I'm pregnant.

read, read, read around here and inform yourself ....and please ask questions.

Quote:

The only problem is when the cycle is bad I suffer like the rest of us and it just sucks and I feel like I'm getting weaker and maybe cant handle another round

We all have felt this way. You and Emily are not alone.

Be well and Pain free!
-lionsound

P.S. The New England Center for Headache is in Stamford, CT and I drive all the way there from Maine. Highly recommend the place.