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   Author  Topic: Hello from Baton Rouge, LA  (Read 567 times)
skyy
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Hello from Baton Rouge, LA
« on: Oct 24th, 2005, 10:29pm »
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Hello, my name is Melissa.  I am 26 & have been suffering from ch since 1998 & was finally diagnosed in 2004.  I am episodic.  I kind of diagnosed myself because I am in nursing school and ch was one of my topics.  When I read the symptoms I knew this is what I had.  I had been to the doctor many times for sinus problems and headaches where he would prescribe steroids (thinking it was inflammation of sinus due to all the facial pain) which would cause them to go away for a while and then once I was off of them, they would start up again.  I finally changed doctors and he agreed with my assessment.  He put me on topamax, but I had to get off of them because I want to get pregnant.
 
I have found my headaches occur yearly & around the fall although they have occured in spring.  I keep a log of each group of headaches and the years they occurred in.  It may be a little overboard, but I have to  feel I have some control.  
 
Anyway, that is my history.  I know mine aren't as bad as what I have read, but I definitly have felt the pain.  Thanks for listening, I'm glad to have people to talk to that understand!  Smiley
 
Melissa
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Re: Hello from Baton Rouge, LA
« Reply #1 on: Oct 24th, 2005, 11:04pm »
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Welcome to the message board Melissa  Smiley
 
It's not uncommon for us to go undiagnosed / misdiagnosed for years before we get it right. Keeping a headache diary is a great idea that may help you later on.
 
Anyways, stick around and read up. THere's tons of info here.
 
Pain Free Wishes
 
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Re: Hello from Baton Rouge, LA
« Reply #2 on: Oct 25th, 2005, 2:22am »
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Hello from Oklahoma, Melissa.  I haven't been to Louisana for more than a quick trip to Fort Polk (my oldest son is stationed there) in forever.  I was raised about 7 miles from a little town called LeCompte (about 25 or so miles south of Alexandria) on the Wilson Bayou.  I've still got 2 sisters living in the Baton Rouge area.  Geez, now I'm kind of homesick for the place.    
 
Yours is a sad tale repeated many times - undiagnosed or misdiagnosed for many years, treated for the wrong illness with the wrong meds or worse with worthless surgeries that only fattens the wallet of the surgeon.  
 
I'm glad you found this website.  The information and support from the people of this family are life saving.  Information is the best tool we have to ensure we get the necessary medical treatment.  Read all you can, ask questions and print out things to take to your doc.  The headache diary is a great idea - keep it up.
 
Again, I welcome you to our little corner of the web.
 
Mike
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Re: Hello from Baton Rouge, LA
« Reply #3 on: Oct 25th, 2005, 4:56am »
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Welcome abord Melissa - By the way, same wonderful name as my youngest sister.
 
Mis./Undiagnosed is all too common.
 
After two endless years of torture my wife managed to diagnose me.  She made me keep a journal and used it  to research my symptoms.  When she let me in on her her CH research/diagnosis, I swear I could have written the symptoms  myself.  She accomplished what a small fortune paid to an Internal Med., Neuro. and hospitals performing endless sophisticated tests couldn't.
 
We presented her research to the Docs. that had been pissin' around for two years - they went from pissin' around to pissed off - felt she shouldn't be diagnosing me with information she got from the internet.  If she could find such clear cut information, why couldn't they?  Better yet why wouldn't they at least listen?
 
Sought out a Neuro. - headache specialist - after 15min. of discussion and a quick look at my journal, he stopped me and said, no need to keep describing symptoms - clearest case of CH he had seen.
 
Journals aren't just personal control fixtures.  They're the best way to track symptoms, communicate effectifely with Docs. and determine if/how/what treatments are effective.  You're doing the right thing by keeping one.
 
Good luck on your journey.
 
Tom  
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