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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Just found the site
        
(Message started by: RyanH on Mar 2^nd, 2006, 8:09pm)

Title: Just found the site
Post by RyanH on Mar 2^nd, 2006, 8:09pm

Hello

I'm Ryan. I'm 26. I've had cluster episodes for about 5 years now.

I had single headaches very rarely (about once every 6 months to a year) since I was 12. After I had head trauma when I was 19, they started coming in patches. Almost always in the winter. Lasting 1-3 months at a time. I'm enjoying an episode right now. :P

I've tried a few medications, with minor success, and to complicate things even futher, the medication I can take is limited by 2 things. I have epilepsy, and a left-bundle-branch-block in the heart. The bundle branch block limits how much verapamil I can take. I've been on verapamil for about 2.5 years, but I've never been able to go over 360 mg per day without side effects.

I used imitrex nasal spray for releif, but it would work for 1-2 headaches, and then have no effect. I also used prednisone, and it worked great. But then it started to lose its effect, and my doctor didn't like how often I was taking it. So then I tried topamax. It kind of helped, but has side effects with my heart. I recently tried lithium, but I felt like crap all the time, and it didn't help.

I use oxygen as my primary comfort. It always works if I use it right as a CH begins. If not, I'm in bad shape. My headaches get me at work most of the time, sometimes at night. At the peak of the bad ones, I'll vomit. Then the pain will taper off.

I've had a lot more hope with these headaches since I've became a Bible believer. I was feeling so helpless before. I'm also very blessed I have a wife that supports me and puts up with the stress of all this.

Well there's my long intro. Glad I found this site! Its been quite a help already!

Title: Re: Just found the site
Post by Dragnlance on Mar 3^rd, 2006, 10:37am

Hi Ryan,

Welcome home. Sorry you were driven to find us, but glad you did.

There is tons of info here, and lots and lots of support.

You are no longer alone in your fight!!

Dragnlance

Title: Re: Just found the site
Post by Richr8 on Mar 3^rd, 2006, 10:46am

[quote author=RyanH link=board=knowya;num=1141348147;start=0#0 date=03/02/06 at 20:09:06]I've had a lot more hope with these headaches since I've became a Bible believer.quote]
whatever works!

Looks like you tried many things, but there is lots more here. Read all you can and ask questions.

hope you feel better soon.

Rich

Title: Re: Just found the site
Post by Ghost on Mar 3^rd, 2006, 11:40am

You are deffinately not alone and any time you need it hop in here and ask for help and someone will try there best to comfort you. God Bless and good luck.

Mike

Title: Re: Just found the site
Post by pfunk on Mar 3^rd, 2006, 2:31pm

Hi Ryan, and welcome to the Family. Sorry you had to come here for the pain. But, let me assure you that you have come to the right place. I'm fairly new to the joint (while not to CH) and this last cycle has been a real killer for me. My advice would be to KEEP FIGHTING, listen and read all you can on here. And listen to the veterans, they really know this beast. Stick around and one or all of us will help you win this battle. Much luv and PFDs to you.

Pfunk

Title: Re: Just found the site
Post by JenniferD on Mar 5^th, 2006, 11:04am

Hi Ryan, so sorry you had to find us this way, but glad you did. You'll find tons of support and information here. What you can't find, ask. We're all here to help each other.

I'm Jen, 20 years episodic, been on & off here for quite a few years. Stick around and you'll learn a lot and find strength in "the family". Welcome home. :)

Title: Re: Just found the site
Post by RyanH on Mar 5^th, 2006, 8:54pm

thanks everyone for the welcome! :)

Title: Re: Just found the site
Post by Bob_Johnson on Mar 6^th, 2006, 6:08am

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf

Title: Re: Just found the site
Post by sandie99 on Mar 10^th, 2006, 2:25pm

Hi Ryan,

I'm so sorry that you have ch. But I'm very happy that you've found your way here. You'll always find people who know exactly what you're dealing with right here.

Welcome!!! :)

Wishing you PF time,
Sanna :)

Title: Re: Just found the site
Post by Jasmyn on Mar 11^th, 2006, 2:58am

Welcome Ryan.

Hang in there and remember we are here for each other.

PF wishes to you.

Title: Re: Just found the site
Post by mynm156 on Mar 11^th, 2006, 1:40pm

Hey Welcome aboard!,

I am sorry that you are one of us but I am glad that you found us! Look around read there are some that spew more than thier share of $@&* but all in all it is just nice to know that you are never alone in this. I went too many years not knowing living with noone understanding that this was no mear headache. Then this site saved my sanity!

Your Brother in Pain

MYNM156