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Topic: New NC Member (Read 255 times) |
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Racer1_NC
CH.com Alumnus
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"Beeeyul the Cat"
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New NC Member
« on: Aug 28th, 2003, 8:28pm » |
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Greetings!
I stumbled across this site a few days ago while trying to find information about CH to send to a friend. She was having a hard time believing just how horrible these things can be. She understands now after browsing through CH.com.
I never knew that so many people suffer from CH. Mine started about 4 years ago. After a year of treatments from my family doctor that did nothing to help, he refered me to specialist that knew exactly what I had and prescribed verapamil. In less than a day, no more pain. While I have gone from cycles to chronic, the verapamil keeps things under control. After reading about other people's experiences, I'm so thankful something works for me.
Bill
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"Everybody's Gotta Learn Sometime."
Eventus stultorum magister.
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cootie
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sumday I'm gonna be sumbody........ ..
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Re: New NC Member
« Reply #1 on: Aug 28th, 2003, 8:33pm » |
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Hey Racer1_NC....nice ta meet cha !! Pam that was gonna say Hi Bill 
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Cause and Effect......"Cause is the effect concealed, Effect is the cause revealed"
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Racer1_NC
CH.com Alumnus
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"Beeeyul the Cat"
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Re: New NC Member
« Reply #2 on: Aug 28th, 2003, 8:44pm » |
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The pleasure is all mine. Now I have a place to talk about something so few people understand. My favorite line about CH is "Unless you've had one, you have no idea at all what it's like, and believe me, you don't wanna know."
Bill
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"Everybody's Gotta Learn Sometime."
Eventus stultorum magister.
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Charlie
CH.com Alumnus
New Board Hall of Famer
Happy to be here
    
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Re: New NC Member
« Reply #3 on: Aug 29th, 2003, 1:01am » |
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Welcome aboard and I'm glad you've had some success making others understand. Stick around. You'll find some good ideas about handling this horror.
Here are two links, one being for a technique I found very helpful and the second leads you to a letter that is the best we have to explain to friends and families just what this is likel
http://www.netsync.net/users/charlies/
http://www.ouch-uk.org/ch/note_colleagues.cfm
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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Mr. Happy
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If I can do it, it ain't art.
 
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Re: New NC Member
« Reply #4 on: Aug 29th, 2003, 1:28am » |
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on Aug 28th, 2003, 8:28pm, Racer1_NC wrote:Greetings!
After a year of treatments from my family doctor that did nothing to help, he refered me to specialist that knew exactly what I had and prescribed verapamil. In less than a day, no more pain. While I have gone from cycles to chronic, the verapamil keeps things under control. After reading about other people's experiences, I'm so thankful something works for me.
Bill |
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Bill,
Chronic control w/verapamil. This is a GOOD thing. Proper meds, proper schedule, proper dose. That's the way the magic is.....sometimes it works, and sometimes it doesn't. Glad you're on the winning side..........
Neato,
RJ
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May those who don't want any
Have memories of never getting any.
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ClusterChuck
CH.com Alumnus
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The BEAST rises again, and again, and again, and .
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Re: New NC Member
« Reply #5 on: Aug 29th, 2003, 4:12am » |
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Ah SHOOT !!! Another hick from North Carolina!
Sorry you have to be here, but since you have to, welcome in!
Use this site to learn and question.
The other biggest thing is, if you need to SCREAM HOLLER VENT or CRY, by all means do it here. Most of us do at one time or another. We are family, and we KNOW what it is like!
And You can even call me on the phone if you need to! I am right here in eastern North Carolina and would be glad to be a shoulder to cry on, or someone to vent to. We help each other. Remember:
Tell us more about you. What GOOD drugs have you tried (ha ha)? How much verapamil do you take? What works best for you? What does NOT work for you? We are a bunch of nosey bastards curious folks!
Welcome from Greenville NC, and look forward to your posts.
Chuck
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"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
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suzy617
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Re: New NC Member
« Reply #6 on: Aug 29th, 2003, 5:03am » |
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Hi Bill
Glad you found us, hope you stick around.
Suzy
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OneEyeBlind
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Yea, I can do this
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Re: New NC Member
« Reply #7 on: Aug 29th, 2003, 6:22am » |
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Welcome to the board !!!!!!!!!! Glad ya found us !
The verap kicked in in one day ??? Probably not, your cycle probably just ended. Glad ya found a good doc !!!!!!
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One cannot step twice in the same river, for fresh waters are forever flowing around us.
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2late
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Ride Free..Pain Free
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Re: New NC Member
« Reply #8 on: Aug 29th, 2003, 6:27am » |
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welcome aboard Bill! glad you found us 'bro! .............Jack
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rumplestiltskin
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That's a smooth entry. Welcome....by s"smooth" I mean that too often folks arrive in the "nuthin works...i'm gonna kill myself" category.
It's important for us to share our ongoing experiences with our progress, side effects etc. I hope you do. This aids others in making decisions about what meds to try, what to stay away from ,what to expect, etc.
My Verap story: It worked, like you, almost instantly at 180 mg in afew weeks I got hit again and immediately upped the dose a step. They again stopped. I repeated that for 2 years till I got to 720/day. In comparison to pre-Vera days those 2 years were virtually painfree. The pain returned with a vengeance. My doc does not want to increase. Some here are at 960.
Another aspect of Verap: Do you taper off "after yer cycle"? Many do. I was too afraid to and besides...I wasn't getting CH so how was I to know when my cycle ended! Some claim that a tolerance to Vera develops. Some claim that is not possible.
Yer experiences and the experiences of all who come here are important in the grassroots research that we do.
Walk in the sunshine
den
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Miss_Deleny
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To live life is to know love
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Re: New NC Member
« Reply #10 on: Aug 29th, 2003, 7:20am » |
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Just wanted to say "WELCOME" Bill ... sorry you have to be here  but glad you are 
~April~
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aprilbee
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Ain't I a stinkah!!
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Re: New NC Member
« Reply #11 on: Aug 29th, 2003, 7:31am » |
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Welcome!! This is the best place to be to receive love, support, vibes for pain free days, and encouragement to make it through those really tough times!!
Glad you found us!
Aprilbee
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Racer1_NC
CH.com Alumnus
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"Beeeyul the Cat"
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Re: New NC Member
« Reply #12 on: Aug 29th, 2003, 8:45am » |
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Thanks to all for a warm welcome!
Charlie....thanks for those links. I'll give that a try next time I have a flair up.
Some mentioned wanting to know doses and if I taper off. I take Verapamil CR 240MG twice daily. Yes I do taper off about once a month to see if the bastards are still there. I did have a 6 month period that was PF without the drug, but they came back and have not left for over a year now. About once every 3 months I get one even taking the meds, but it's usually nowhere near the level without meds.
Triggers? The two I can truly identify are mowing the lawn and lack of proper rest. Yes, you heard me correctly, mowing the dang lawn. Go figure. I have a good amount of area to cover with a riding mower...towards the end is where they come on. That's where the first one appeared years ago. Thinking it was allergies, I tried different masks, of course no help. Also if I am pushing myself and do not allow proper time for sleep they are more likely to come on.
Other "GOOD" drugs? This will bring a good laugh I am sure. Good old fashion, OTC, sinus opening, nasal spray. If the pain level isn't on the high end of the scale, it helps. Specialist tells me not to do it, but says it could be changing the blood flow to the right areas. I know one shouldn't use the stuff regularly so I am NOT advising people to try it, but back before verapamil I would have snorted chicken dung hourly if it would have helped.
OneEyeBlind....yes...1 day on verapamil did it. Tried tapering off after 2 weeks, they were still there. Took 4 months to get out of that cycle.
Bill
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"Everybody's Gotta Learn Sometime."
Eventus stultorum magister.
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ZAIRA
New Board Hall of Famer
Brave to Stand !!!
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Re: New NC Member
« Reply #13 on: Aug 29th, 2003, 2:16pm » |
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Hi Bill and welcome.... You are safe here!
We all know how you feel.
For 8 Years I’ve been thinking to be alone with my pain, renouncing in explaining to the people what CH is because they couldn’t understand me.... 
Stay with us, you will find comprehension, love and you’ll feel better.
With love, Zaira
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| « Last Edit: Aug 29th, 2003, 2:18pm by ZAIRA » |
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Love yourself, Love others, Love often, Forever!
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toothpick
New Board Newbie
I love YaBB 1G - SP1!
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Re: New NC Member
« Reply #14 on: Aug 29th, 2003, 2:58pm » |
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Welcome Bill
Found this place a month ago and already got more help than I ever had with years of CH. Lots of great people here.
Russ
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CryingInPain
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From one Newbie to another... WELCOME!!
I'm sorry you have to be here but for anyone with CH's this is the place to be!
I found this board about two weeks ago half way through my cycle and the message board, and chats, and all the information and well *bowing down * all the AMAZING people have made all the difference in the world! When you need support or a shoulder we are here....and hmm in the case you need a baseball bat Chuck can give you tips on how to get what you want from Drs hehe
~Hugs~
Jen
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Racer1_NC
CH.com Alumnus
New Board Hall of Famer
"Beeeyul the Cat"
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Posts: 1887
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Re: New NC Member
« Reply #16 on: Aug 29th, 2003, 6:23pm » |
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Man.....wish I found this place sooner!
I guess I am lucky. My doc would give me just about anything if it would help. Of course his specialty is adult headaches so that might have a bearing on it. I'm lucky to live in a county with a medical school.....one can find a doc for just about any problem. Paying for it is another thing.....
Bill
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"Everybody's Gotta Learn Sometime."
Eventus stultorum magister.
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Cooked Brain
New Board Old Timer
a.k.a. Max Payne, YOUCH this hurts...
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Re: New NC Member
« Reply #17 on: Aug 29th, 2003, 7:02pm » |
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Hi there Bill,
great to read the beast is under control with verapamil (so is mine ) welcome to the board, everything you need is right here!
hope you do well
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"We can NOT solve our problems with the same kind of thinking that got us IN to the problem in the first place" Albert Einstein
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