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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> newbee with years of clusters. 
        
(Message started by: jerry1975 on Feb 25^th, 2004, 2:34am)

Title: newbee with years of clusters.
Post by jerry1975 on Feb 25^th, 2004, 2:34am

Just found this site and glad I did. I've had cluster headaches for 15 years and just found out they are the chronic type. Could not understand why nothing the doctors over the years prescribed over the years had helped and now learn that for the chronic type the usual treatments don't work. Any suggestions? I will be checking out the site for more information, any help will be appreciated.

Title: Re: newbee with years of clusters.
Post by J.ten_Dam on Feb 25^th, 2004, 3:04am

Hi There Jerry,
What medication are you currently using?
When Verampamiel no longet worked for me and I had reached 960mg per day I took a med holliday. When I restarted Verampamiel started working again.
Several years later now I am still using Verampamiel 2 x 200 plus 12mg Melatonin at night. This has made a great chang for me. I am by no means pain free but I do get a break of 3 to 7 days and then have a bad patch and then a break. I am satisfid now and have no intention trying anything elce. (unless things change again).
Make sure you read all the information under the buttons on the left hand side of this page.
Wish you PFDAN

Title: Re: newbee with years of clusters.
Post by BobG on Feb 25^th, 2004, 9:28pm

I'm a little confused about what you are saying. Please help me understand.

on 02/25/04 at 02:34:37, jerry1975 wrote:

I've had cluster headaches for 15 years and just found out they are the chronic type. The chronic type? Chronic is measured in time i.e. one year of headaches without a 2 week break. Has this been going on for 15 years with no breaks? Or does your doctor have a different definition for the word chronic?

Could not understand why nothing the doctors over the years prescribed over the years had helped and now learn that for the chronic type the usual treatments don't work. I've been reading this board for a while now and don't remember different medicines for eposodics and chronics. Just the chronics take the meds forever.

Any suggestions?
Possibly a second opinion from a neurologist that is knowledgable about clusters.

I will be checking out the site for more information, any help will be appreciated.

Stick around. While you're waiting for more people to post, click on the buttons on the left side of you screen and read, read, read.

Title: Re: newbee with years of clusters.
Post by Charlie on Feb 26^th, 2004, 3:07am

Welcome aboard Jerry. If you stick around you will find good ideas and ways to deal with this horror. At least here you are dealing with people who understand that this is.

Here are a couple links that may be helpful. The first being a technique that worked for me:

http://www.netsync.net/~charlies/

This one is a letter written by a fellow sufferer that explains that this has nothing to do with what others think of as a “headache.“ Its author encourages copying. It’s well worth it:

"http://www.ouch-uk.org/ch/note_colleagues.cfm"

Title: Re: newbee with years of clusters.
Post by Linda_Howell on Feb 26^th, 2004, 12:35pm

Hi Jerry,

I notice you are from Redding, Ca. which is where I am from too. It would be nice to know if the calOUCH brochures that I have distributed all over the city are what brought you here.

Tell us more about yourself and check your E-mail.

Welcome

Linda Howell

Title: Re: newbee with years of clusters.
Post by amen on Feb 26^th, 2004, 5:49pm

I just want to say welcome, but sorry you have to be here. Hope you find relief soon.
Andrea