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!

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!

Potter wrote on Oct 17^th, 2009 at 9:47am:

You got balls.     Potter

:-?   meaning ?????

Its not an EXclusionary message board.

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...

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...

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.

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

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

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

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...

Have you studied the tread about hormone treatment?

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

Marc

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...

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

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  ;)

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?

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

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. 

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!!!

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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?

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

JustNotRight wrote on Oct 17th, 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...

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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 START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and I get the brand Nature's Way - Kudzu Root Extract

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