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dj51 CH.com Newbie Offline I Love CH.com! Posts: 19 NJ Gender:	Chronic's Corner Oct 17^th, 2009 at 12:21am Hi...I am brand new to the board and I wanted to start a thread for Chronic's...It is a little different than episodics and felt we should have our own thread. I am two years in and I have always been chronic...I would love to hear your stories...treaments...whatever... Thanks and good luck to all!
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JustNotRight CH.com Sponsor Offline CH version 15.0.8 member since 2005 aka GingerS224 Posts: 1300 Wilkes-Barre, Pa (USA) Gender:	Re: Chronic's Corner Reply #1 - Oct 17^th, 2009 at 9:40am Hi DJ Chronic here too, 10 years in and according to my Doc have always been chronic, according to me 8 years chronic. Am on Verapamil SR and take kudzu daily . Nice to meet you and hoping you have a PF day and night!
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JustNotRight CH.com Sponsor Offline CH version 15.0.8 member since 2005 aka GingerS224 Posts: 1300 Wilkes-Barre, Pa (USA) Gender:	Re: Chronic's Corner Reply #2 - Oct 17^th, 2009 at 9:54am Potter wrote on Oct 17^th, 2009 at 9:47am: You got balls. Potter meaning ?????
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seaworthy CH.com Hall of Famer Offline Posts: 706	Re: Chronic's Corner Reply #3 - Oct 17^th, 2009 at 10:15am Its not an EXclusionary message board.
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dj51 CH.com Newbie Offline I Love CH.com! Posts: 19 NJ Gender:	Re: Chronic's Corner Reply #4 - Oct 17^th, 2009 at 10:31am My thread was in no way an attempt to be exclusionary. But rather a forum to highlight chronic issues. The two are different and a lot of times the treatments can be different as well. If you interpreted the thread the wrong way I apologize. It was written with the best intentions...
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Re: Chronic's Corner
Reply #5 - Oct 17^th, 2009 at 10:35am

JustNotRight wrote on Oct 17^th, 2009 at 9:40am:

Hi DJ

Chronic here too, 10 years in and according to my Doc have always been chronic, according to me 8 years chronic.

Am on Verapamil SR and take kudzu daily .

Nice to meet you and hoping you have a PF day and night!

Hi Ginger,

Thanks for your note...I was on verapamil but it didn't work for me...I am really interested in hearing about the Kuzu. I know absolutely nothing about it but see a lot of people use with positive results...

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seaworthy CH.com Hall of Famer Offline Posts: 706	Re: Chronic's Corner Reply #6 - Oct 17^th, 2009 at 11:22am Quote: Hi...I am brand new to the board and I wanted to start a thread for Chronic's Only... Not much to "misinterpret"there.
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dj51 CH.com Newbie Offline I Love CH.com! Posts: 19 NJ Gender:	Re: Chronic's Corner Reply #7 - Oct 17^th, 2009 at 11:32am seaworthy wrote on Oct 17^th, 2009 at 11:22am: Quote: Hi...I am brand new to the board and I wanted to start a thread for Chronic's Only... Not much to "misinterpret"there. Point taken...I edited the word only...I could see how that may make it feel exclusionary...Thanks
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Charlotte CH.com Alumnus Offline Posts: 2385 Patterson,California Gender:	Re: Chronic's Corner Reply #8 - Oct 17^th, 2009 at 12:40pm there are a lot of us chronics around. what did you want to talk about? As a chronic, I really appreaciate everyone who is here in cycle & out of cycle. Charlotte oops, and the supporters. Thanks, guys
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dj51

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Re: Chronic's Corner
Reply #9 - Oct 17^th, 2009 at 1:14pm

Charlotte wrote on Oct 17^th, 2009 at 12:40pm:

there are a lot of us chronics around. what did you want to talk about?

As a chronic, I really appreaciate everyone who is here in cycle & out of cycle.

Charlotte

I really just wanted to see what treatment options have worked...How some people are getting through with CH attacks daily...Whatever honestly...

oops, and the supporters. Thanks, guys

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Re: Chronic's Corner
Reply #10 - Oct 17^th, 2009 at 2:06pm

Charlotte wrote on Oct 17^th, 2009 at 12:40pm:

there are a lot of us chronics around. what did you want to talk about?

As a chronic, I really appreaciate everyone who is here in cycle & out of cycle.

Charlotte

oops, and the supporters. Thanks, guys

Hi Charlotte,

Just thought of a question...I am 32 and have had them for two years...Have the gotten worse for you as you got older? My fear is that they will get worse for me as my hormone levels drop...

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Marc Ex Member Gender:	Re: Chronic's Corner Reply #11 - Oct 17^th, 2009 at 3:04pm Have you studied the tread about hormone treatment? You commented that the treatment of chronic was different than episodic. In what way? Marc
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Re: Chronic's Corner
Reply #12 - Oct 17^th, 2009 at 5:57pm

Marc wrote on Oct 17^th, 2009 at 3:04pm:

Have you studied the tread about hormone treatment?

You commented that the treatment of chronic was different than episodic. In what way?

Marc

Well for example....The doctors seem to approach treatment a little differently. Like with triptans, they know it stresses your heart when you take them so they will try and push O2 more to chronic sufferes...For someone who has a monthly bout every year it's a lot safer for them then if you are taking it day after day with no real break. Also it seems some medications have better success rates for each kind...Prednisone seems to be more effective for episodic patients...Methysergid seems to be much more effective in episodic as well...Lithium seems to work better in chronic,etc...

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Re: Chronic's Corner
Reply #13 - Oct 17^th, 2009 at 8:43pm

I do not agree with your statements, including the "etc" - except of course excessive use of Triptans. That can be bad for anyone.

An effective course of treatment has to be tailored to the individual's response to each component of the treatment. That's what a good Neuro does. Unfortunately, doctors with good solid CH experience are few and far between.

You are certainly welcome to an opinion, but I still disagree with the core opinion that the treatment should be different for chronic sufferers vs. episodic. Every available tool should be tried until a positive response is achieved.

Respectfully,
Marc

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Re: Chronic's Corner
Reply #14 - Oct 17^th, 2009 at 8:53pm

dj51 wrote on Oct 17^th, 2009 at 10:31am:

My thread was in no way an attempt to be exclusionary. But rather a forum to highlight chronic issues. The two are different and a lot of times the treatments can be different as well. If you interpreted the thread the wrong way I apologize. It was written with the best intentions...

I figured as much and that is another reason I went ahead and replied. No Harm No foul Wink

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patrickm CH.com Newbie Offline I Love CH.com! Posts: 1 Gender:	Re: Chronic's Corner Reply #15 - Oct 17^th, 2009 at 9:04pm Hi. Names Pat. Was a member a few years ago. Stopped smoking and hadn't had an episode in two years!!! Thought they were gone. This is my third in two days. Welcome back. These suck!!!!!!!!! Anyone have similar story?
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Re: Chronic's Corner
Reply #16 - Oct 17^th, 2009 at 11:22pm

Hi my name is Marcy. I was a member many yrs ago. I am chronic. I suffered with nightly attacks just about every hour, until recently. I was diagnosed with obstuctive sleep apnea. Since starting with the CPAP I have less attacks and the majority of the attacks are controlled with O2. I stopped all meds and have alot more energy. Has anyone else been diagnosed with CH and sleep apnea? Just curious about the outcome. Thanks for all feedback and comments.
Marcy

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Re: Chronic's Corner
Reply #17 - Oct 18^th, 2009 at 9:09am

Hi DJ...have been chronic for a year and a half. ..doesn't seem like much when you hear of those who have been chronic for 20 years! Can't imagine!! Anyway, I'm not one for perscriptive drugs, but hey, that's me. Whatever gets ya thru the night. Anyway, I started kudzu and it seems to help enormously. Kept me headache free for 6 nights. Keeping my fingers crossed.

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davedmk CH.com Newbie Offline I Love CH.com! Posts: 21 devon Gender:	Re: Chronic's Corner Reply #18 - Oct 18^th, 2009 at 9:48am hi to all !!!!!!! i have been chronic for 13 years and was only properly diagnosed 4 months ago,same old story for everyone this seems ,are there any groups that meet in the uk ?it would be nice to be able to talk to other people face 2 face somtimes!!!
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seaworthy CH.com Hall of Famer Offline Posts: 706	Re: Chronic's Corner Reply #19 - Oct 18^th, 2009 at 10:09am Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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Re: Chronic's Corner
Reply #20 - Oct 18^th, 2009 at 10:45am

davedmk wrote on Oct 18^th, 2009 at 9:48am:

hi to all !!!!!!! i have been chronic for 13 years and was only properly diagnosed 4 months ago,same old story for everyone this seems ,are there any groups that meet in the uk ?it would be nice to be able to talk to other people face 2 face somtimes!!!

Hi Davedmk - we've met two of your UK-comrades, LeLimey and Andrewjb. Hopefully you can reach out to them or go to the ouchuk link Seaworthy provided.

What do you do to abort / prevent your CH?

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Re: Chronic's Corner
Reply #21 - Oct 18^th, 2009 at 11:30am

dj51 wrote on Oct 17^th, 2009 at 10:35am:

JustNotRight wrote on Oct 17^th, 2009 at 9:40am:

Hi DJ

Chronic here too, 10 years in and according to my Doc have always been chronic, according to me 8 years chronic.

Am on Verapamil SR and take kudzu daily .

Nice to meet you and hoping you have a PF day and night!

Hi Ginger,

Thanks for your note...I was on verapamil but it didn't work for me...I am really interested in hearing about the Kuzu. I know absolutely nothing about it but see a lot of people use with positive results...

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Kudzu is an herb and can be found in an herbal supplement. You can order it online from a vitamin shop or check at GNC if you have one near you. I've found that it's cheaper if you order it online from a trusted herbal retailer or vitamin shop.

I order mine from Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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and I get the brand Nature's Way - Kudzu Root Extract

Good Luck to you and I hope you find some benefit from it.

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An eye for eye only ends up making the whole world blind.
M.K. Gandhi

If you are going through hell...Just keep going

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