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Topic: New Supporter (Read 348 times) |
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Tracii
New Board Newbie
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Posts: 16
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New Supporter
« on: Jan 22nd, 2006, 6:44am » |
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Hi all,
Firstly i would like to thank everyone who has PM'd me and made me so welcome you have all been very helpful and i am greatful for your support. 
I am a supporter to my husband who has suffered the wraith of the beast for 6-7 years , but was only diagonsed correctly about 4 years ago, he has been on a variety of meds including firstly Panadine Forte which as you all know didnt do anything for him cept a trip to the ER after his Dr at the time kept pumping out scripts without taking the time for a proper diagnosis which surprisingly enough he got at the ER along with a head Scan!! Since then hes been taking TEGRETOL firstly on its own with some relief then taking it along with INDOMETHACIN which wasnt a good mix, he was into week four and having 2-3 per day/night and his current Dr doubled his dosage which lead to vommiting and CH's lasting longer than ususal with alot more pain....
Since finding this amazing site i have armed him with all your suggestions and what has worked for some of you ,i have printed out alot of suggestions and sent them to him ( he is interstate working) in a hope that his Dr and Employers can have some understanding of what he is going through.
I convinced him to try the Red Bull when he feels a CH comming on and return to the Dr 5 days ago and he has prescribed a drug called DESERIL and i am happy to report after 4 weeks of unrelenting angony and very little sleep he has had 5 DAYS pain free 
I know i can never really understand his pain and what must be going through his mind during a episode but after reading all your words at least i can give him some of your ideas and support him as best as i can.
Thanks again
Tracii & John
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DennyM
New Board Newbie
She-Who's-Never -Obeyed
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Re: New Supporter
« Reply #1 on: Jan 22nd, 2006, 7:13am » |
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Hi, again Tracii!
Iv'e just sent you a PM! Lovely to see you here on the board. You'll get to know some fantastic, compassionate, helpful people here, and as and when John is able to join us, he too will find loads of very valuable advice.
CH is not an easy thing to deal with. You'll read some things on this site that are absolutely hearbreaking - from both sufferers and supporters. The important thing is - we're all here for each other, and no - it's not an exclusive little clique - it's just that people who have never dealt with CH (this includes a surprising percentage of the medical proffession) don't begin to have the smallest inkling of just how destructive this affliction can be. For many of us - until we came to CH.com - the feeling of isolation was just devastating.
Read everything you possibly can from the left hand side of this board. Arm yourself with is much info as is available, and, above all - don't be a stranger!
Love
Den
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Forgive them their sins against us, just don't let them forget 'em.
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AussieBrian
New Board Hall of Famer
Got beer?
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Posts: 1695
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Re: New Supporter
« Reply #2 on: Jan 22nd, 2006, 7:46am » |
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I've always considered myself fortunate in that I'm only a CHead. Dunno how you supporters hack the pace, really I don't. First hint of a shadow and I'd be into the bush so fast even the tax man wouldn't keep up.
Just remember to keep a little time out for yourself. Even if it's treating yourself to a haircut or coffee with friends, but not letting this beast run your life.
Miles and piles of smiles,
Brian way up north.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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Barry_T_Coles
CH.com Alumnus
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Re: New Supporter
« Reply #3 on: Jan 22nd, 2006, 7:07pm » |
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Hi Tracii
Welcome aboard and glad to have you with us even though it’s through the tricky little shit we deal with.
Please pass our best on to John and hope things get better for him soon.
How did he go with getting the o2, keep us posted.
Kind Regards
Barry
The Norwester
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Cathi04
CH.com Alumnus
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I love YaBB 1G - SP1!
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Re: New Supporter
« Reply #4 on: Jan 22nd, 2006, 7:52pm » |
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LOL is this the NEW AUSSIE section of the message board??
Traci...........all of what the boys from waay up North have said...and GOOD for you and John! You are taking control of the beast, fighting fire with fire!!! I think you have learned already, CH is NOT what you are....it's something you deal with. make the very best of John's PF time, and use all the tools available when you must deal.
I am so sorry John needs a supporter, Traci, but welcome, welcome!
Drop in for hugs or laughter whenever....
Den and Brian.you guys are GREAT!!!!!!!!!!!!!!!!!!!!!!!!
And, Barry.so are YOU!
Cathi -The Pacific Northwester! 
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| « Last Edit: Jan 22nd, 2006, 7:54pm by Cathi04 » |
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Life is not measured by the number of breaths we take but by the moments that take our breath away.
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Tracii
New Board Newbie
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Re: New Supporter
« Reply #5 on: Jan 24th, 2006, 3:38am » |
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I agree you guys are great , thank you all for all your kind words ,PM's and support it has helped more than you know.
Cheers
Tracii
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FramCire
CH.com Alumnus
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Life like a froward child must be humored a little
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Re: New Supporter
« Reply #6 on: Jan 24th, 2006, 3:24pm » |
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Let me just say thanks to you. My wife has been amazing to me despite the fact that I want to leave the house and hide from her so she doesn't have to deal with this anymore. Without her and my kids, I would have a tough time wanting to even live but they have made it much easier to get through this.
Support people rule. It sucks to need them and sucks to been a burden on them but it is amazing to feel loved by someone that much that they are willing to be there through this.
Anyway, thank you very much for being there for John. I thank my wife every time I think of it and it isn't nearly enough.
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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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Linda_Howell
CH.com Alumnus
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Hearing is one thing. Listening is another.
 
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Re: New Supporter
« Reply #7 on: Jan 24th, 2006, 4:12pm » |
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Quote:| LOL is this the NEW AUSSIE section of the message board?? |
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I was thinking of the exact same thing but you beat me to it Cathi. 
Welcome to you Tracii. Please look into oxygen. There is a link to the left of here that will explain it's uses and what kind of he'll need. He does need a prescription for it (at least in the US we do) but it's a Godsend for a LOT of us, it's cheap compared to other meds and virtually no side effects.
Quote:| support him as best as i can. |
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and that's all you can do. Looks like he has a great wife.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Tracii
New Board Newbie
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Re: New Supporter
« Reply #8 on: Feb 4th, 2006, 7:55am » |
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Just a quick update...
Seems the new meds DESERIL and red bull have been working their magic, john is now going into week 3 PF , with the exception of the two nights he thought it was ok to finally have a drink...WRONG he felt the familiar feeling lurking in after his first can and promptly stopped drinking.
He hasnt needed to get the o2 ..yet.. but i have sent him all the info he needs to give the Dr and he has also spoken to the local chemist about o2 just in case the deseril stops working ( fingers crossed it doesnt.)
Again thank you all for your support you are all amazing people 
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Guiseppi
CH.com Alumnus
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Re: New Supporter
« Reply #9 on: Feb 4th, 2006, 9:57am » |
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Hey Tracii, welcome to the asylum. I'm blessed with a supporter like you. My wife found this site for me and it saved my sanity. Your husband is a lucky man! And the Aussie is right, even if he does talk funny. Save some time for yourself, these damn things can really take a toll on a family. Push for the oxygen, it's the greatest for stopping the hits and the side effects are nil. Bless you for being a supporter, you rock!!
Guiseppi
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RichardN
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Re: New Supporter
« Reply #10 on: Feb 4th, 2006, 12:35pm » |
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Hello and Welcome
. . . . . and ditto all the above. My wife/supporter found this site for me 2/02 after a year of tests (normal of course), mis-diagnosis and non-working meds. Was a basket-case when I came here . . . have most of my life back.
Another vote here for 02. It's my only abortive and has been a miracle for me.
Keep us informed on how you're doing and make sure you take the printed 02 info with you for your doc . . . must be used with proper regulator and mask to be effective.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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Dragnlance
New Board Hall of Famer
Monster bait
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Re: New Supporter
« Reply #11 on: Feb 5th, 2006, 2:10pm » |
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Tracii, I want to thank YOU for being a supporter. I know that I most likely would not be alive today if my wife was not able to support me as you are your husband. Many times I have begged her to take me out into the alley and shoot me like a crippled horse to put me out of my pain. obivously she refused. Her support is what keeps me going.
So again, Thank you, as you may not be aware just how much it means.
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