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Topic: What an improvement! (Read 516 times) |
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Sonnie_Parker
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What an improvement!
« on: Nov 11th, 2005, 3:14am » |
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Wow! I can say this site has really come a long ways. I remember some 10 years or so ago when there were only a couple hundred members and we had the old message board format. Been a long time! Nice improvement to the site indeed! Thanks to all who contributed to the effort.
I feel like a new member coming to this after being away for so long.
My wife actually stumbled onto ch.com a few years after I started having ch. My first ch was at a Hootie & The Blowfish concert in February 1994. Had no idea what was going on. By the time my buddy got me to the hospital it was gone. Next night about the same time I tell my wife I feel like I'm getting that same headache I had the night before at the concert and sure enough, wham! Then about 30 minutes later it was gone. Then it began... night after night after night... same time, some worse than others. This went on for about 2 weeks and they were gone. We really couldn't figure out what had happened and my doctor was puzzled.
Life went on until about 2 months later (or thereabouts)... wham... had another. I dreaded the next night wondering was it starting all over again. Yep... next night... same thing. Next day I was at the doctors office. A dose pack of steroids later the headaches were gone. Doc was still puzzled. No suggestions for testing or anything though... didn't seem too worried.
Then a couple months later... here we go again. I was thinkin' it's time to tell doc we gotta do some testing. So blood test, MRI, nasal xrays... I can't even remember what all we did trying to figure it out. Steroids again and they were gone after a week.
I don't know... I guess we (I) was hoping they would just go away for good after enough doses of steroids.
Not so! Over and over they kept coming back. Eventually the steroid dose packs only stopped them for a few days... would not break the cycle. Doc spoke with some specialist and they just didn't have a clue since tests all came back negative... not much they could recommend and was no since is seeing me cause they had never heard or dealt with such at the time.
I suffered through a couple of years of episodes just having no clue as to what I had until one day my wife stumbles across this website with a couple hundred members at the time.
While it was very little info compared to now... it was a huge amount of info for me and doc cause we had zilch at the time and my headaches fit the ch description perfectly. Then we started researching ch. Doc couldn't find squat... it was wierd that I was furnishing my doc on everything there was to learn about ch. Amazing! But hey.... he was open and willing and we could find no doctors anywhere at all that knew anything.
Of course we tried this and that for a long time... nothing working and the episodes getting closer and closer and lasting longer and longer.
Eventually we went to fulltime steroids, larger doses, for two years. After a couple of years I could handle no more steroids as they were killing my body and side effects were beginning to be rough, alhough not as bad as ch and still a ch would squeeze through all along, although mild at least.
Then we decided to try oxygen... worked good if I started breathing 7-8 lpm at onset. Ch only lasted 5-10 minutes usually. Hauled a tank around with me because ch started to get chronic and sometimes a second one during the day ... sometimes one would pop up unannounced which was really unusual in my previous experiences.
Anyway... in 2000 doc decided he'd try me on Lithium and I wasn't crazy about it at the time... still wouldn't be I guess, but anything other than ch pain. Just before we start it he had been doing much research and was suggested depakote. Why not... didn't seem near as bad. So started it and about 2 weeks into it at gradually increasing up to 1250mgs day... ch gone. Slowly we dropped down to 250mg day but hint of ch started creeping back in... so we went back to 500mg day and bingo! What a blessing! Been ch free since and life is much better.
You all have done a great job on the site and it is wonderful that you have developed it to this point and kept it up so well to help so many ch sufferers.
Excellent!
Maybe somehow I can contribute more frequently and be of some help. I'm embarrassed for not having vistied more often and apologize as well.
Sonnie
Luverne, Alabama
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zanychef
New Board Newbie
i'm busting with a masx cant really go wrong can i
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Re: What an improvement!
« Reply #1 on: Nov 11th, 2005, 12:06pm » |
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wb to clusterworld 
lots has no doubt change so read read read
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plenty of time to sleep now me headaches aint too bad
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Jasmyn
CH.com Alumnus
New Board Hall of Famer
Each day will be a new trick in life's journey
 
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Re: What an improvement!
« Reply #2 on: Nov 11th, 2005, 1:59pm » |
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WB Sonnie!
Jas 
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Jazz
Madness is proclaimed by society’s inability to accept its own infallibility
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biker_babe
New Board Newbie
I love YaBB 1G - SP1!
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Re: What an improvement!
« Reply #3 on: Nov 11th, 2005, 4:04pm » |
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WB Sonnie!!  pretty new to this myself but good to hear from someone that theres always hope. B well!
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Sonnie_Parker
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Re: What an improvement!
« Reply #4 on: Nov 11th, 2005, 6:57pm » |
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Thanks!
biker_babe... just don't ever give up, there is always hope that you'll eventually find something that will work.
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Kris_in_SJ
New Board Hall of Famer
There's no place like home.
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Re: What an improvement!
« Reply #5 on: Nov 11th, 2005, 8:50pm » |
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Welcome Sonny,
It's often a long and arduous haul to the diagnosis. Sounds like you have one now.
Steroids are great for the short haul, but need to be supplemented by a preventative like Verapamil. And, CHA's obviously need to be treated immediately with an abortive like Oxygen or Trex injectibles.
If you haven't seen it yet, please follow and print this link for your doc. It's stapled in the front of my patient chart and I credit it for saving my life - literally.
http://www.brightok.net/~mnjday/chtherapy.pdf
Lithium is a help to many, but you might be served even better by a preventative like Verapamil at fairly high dose. Keep up with the O2, just make sure it's being used as suggested in the link to the left.
Keep posting and many hugs coming your way,
Kris
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I'm a small woman in small town being chased by a VERY BIG BEAST!
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