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Topic: Just been diagnosed again (Read 212 times) |
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RoyHuling
New Board Newbie
I love YaBB 1G - SP1!
Posts: 1
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Just been diagnosed again
« on: May 16th, 2005, 3:02pm » |
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5 years ago I suffered with clusters for 3 months, put on Prednizone for a week and have not had any for 5 years, # weeks ago they started again, all during the night(3) and 1 during the day, today the Dr, put me on Prednizone (20mg) again along with verapimal (360 mg). and also ordered oxygen for the home to try ay 100 % oxygen for 5-15 min at onset. We will see what happens now, I am a newcomer here.. Roy
email royhuling@hotmail.com
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Jonny
CH.com Alumnus
New Board Hall of Famer
Give me a shovel Ill dig my own grave!
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Posts: 26213
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Re: Just been diagnosed again
« Reply #1 on: May 16th, 2005, 3:19pm » |
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Welcome Roy, theres plenty to read here so you better get started 
Sorry you had to come looking for us, but we are a mental bunch so you could get some laughs...LOL
....................................jonny
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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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Karla
CH.com Alumnus
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One of Many and Never Alone - Join OUCH
 
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Posts: 3090
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Re: Just been diagnosed again
« Reply #2 on: May 16th, 2005, 3:26pm » |
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Sorry to hear that you are starting to go through this all over again. Remember we are here for you if you need us.
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Karla
suffer chronic ch
ch.com groupie since 1999
Proud Mom of Chris USMC Semper Fi
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sandie99
New Board Hall of Famer
Wish it, dream it, do it - inspite the pain!
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Re: Just been diagnosed again
« Reply #3 on: May 16th, 2005, 3:53pm » |
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Warm welcome to ch family!
on May 16th, 2005, 3:19pm, Jonny wrote:
we are a mental bunch so you could get some laughs...LOL
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I'm so sorry that you have ch, but I'm so glad you found us... 
Best wishes & PF days and nights,
Sandie
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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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LeLimey
CH.com Alumnus
New Board Hall of Famer
OUCH-US - Less "ME" and more "WE"
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Posts: 11720
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Re: Just been diagnosed again
« Reply #4 on: May 16th, 2005, 4:14pm » |
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Hi Roy, its nice to meet you even if it does have to be here.
As everyone else has said already, read read read.. you'll end up knowing alot more than your doc I guarantee you!
What dose of verap are you on? Bear in mind you usually start at a lower dose and build up so don't be afraid to go back and see the doc to get him to up your dosage. Don't be tempted to do it yourself as it could end up messy.. verap is actually a BP drug (it just works bloody well for ch!) so don't mess with it. Here we have to have an ECG at every increase so I would suggest you speak to your doc about that too. It usually takes about 2 weeks to kick in which is why the pred taper is great as it covers you.
O2.. greatest thing ever in the history of the ch world in my book. I love it! People here seem to range between 8-15 Litres per Minute, I myself go between 12 and 15 (cos I have a BIG gob and I gulp it! Everyone else.. SHUDDUP!)
You do need to be using a non rebreather mask though.. those nasal cannula's are about as much use as a chocolate fireguard.
Ask all the questions you want, come and join in with the rest of us nutters and remember, every single one of us knows how you feel and can empathise.
Welcome home!
PFDANS (painfree days and nights)
Helen
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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