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        New Message Board Archives >> Jul-Sep 2003 >> New NC Member
        
(Message started by: Racer1_NC on Aug 28^th, 2003, 8:28pm)

Title: New NC Member
Post by Racer1_NC on Aug 28^th, 2003, 8:28pm

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

Title: Re: New NC Member
Post by cootie on Aug 28^th, 2003, 8:33pm

Hey Racer1_NC....nice ta meet cha !! Pam that was gonna say Hi Bill ;)

Title: Re: New NC Member
Post by Racer1_NC on Aug 28^th, 2003, 8:44pm

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

Title: Re: New NC Member
Post by Charlie on Aug 29^th, 2003, 1:01am

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

Title: Re: New NC Member
Post by Mr.Happy on Aug 29^th, 2003, 1:28am

on 08/28/03 at 20:28:01, 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

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

Title: Re: New NC Member
Post by ClusterChuck on Aug 29^th, 2003, 4:12am

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:
You are not alone!

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

Title: Re: New NC Member
Post by suzy617 on Aug 29^th, 2003, 5:03am

Hi Bill

http://www.gifs.cc/aniwelcome1a.gif

Glad you found us, hope you stick around.
Suzy

Title: Re: New NC Member
Post by OneEyeBlind on Aug 29^th, 2003, 6:22am

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 !!!!!!

Title: Re: New NC Member
Post by 2late on Aug 29^th, 2003, 6:27am

welcome aboard Bill! glad you found us 'bro! .............Jack

Title: pilgrim's progress
Post by rumplestiltskin on Aug 29^th, 2003, 6:48am

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

Title: Re: New NC Member
Post by Miss_Deleny on Aug 29^th, 2003, 7:20am

Just wanted to say "WELCOME" Bill ... sorry you have to be here :'( but glad you are :)

~April~

Title: Re: New NC Member
Post by aprilbee on Aug 29^th, 2003, 7:31am

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

Title: Re: New NC Member
Post by Racer1_NC on Aug 29^th, 2003, 8:45am

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

Title: Re: New NC Member
Post by ZAIRA on Aug 29^th, 2003, 2:16pm

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 :)

Title: Re: New NC Member
Post by toothpick on Aug 29^th, 2003, 2:58pm

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

Title: Re: New NC Member
Post by CryingInPain on Aug 29^th, 2003, 4:54pm

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

Title: Re: New NC Member
Post by Racer1_NC on Aug 29^th, 2003, 6:23pm

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

Title: Re: New NC Member
Post by Cooked Brain on Aug 29^th, 2003, 7:02pm

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