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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Hi From Fla - Wish We Were All Free From Clusters 
        
(Message started by: Chillrmn1 on Oct 17^th, 2004, 7:25am)

Title: Hi From Fla - Wish We Were All Free From Clusters
Post by Chillrmn1 on Oct 17^th, 2004, 7:25am

I'm newly registered but not new to this great site. My cluster history mirrors so many others. They started in my early twenties. Was misdiagnosed with sinus headaches by an ENT back then. Nothing over the counter would relieve these. Went back to an ENT when I was 40 thinking I had a bad sinus infection. Ironically, it was this ENT which referred me to a Neuro suspecting CH, only since his son suffered with CH did he identify the symptoms. I'm 47 now and have been using Verapamil for preventative and Imitrex for abortive. I'm episodic with 12- 14 month free periods and 6-8 week cycles in between. I've been to two different Neuros, but neither one gave me the impression they were really up on clusters. I'm not satisfied with the verapimil as an effective preventative for me anymore and am taking higher doses of Imitrex than I should. Does anybody know of a Neuro in Broward County up on clusters? I'd like to try different therapy hoping for better effectiveness. I currently into my sixth week of a CH cycle now. Getting 5-6 daily, 4 usually at night. Have not been able to identify my triggers and don't drink alcohol anymore. Stopped that when I learned this was a trigger for many. I have one question for all: How many have been exposed to refrigerant inhalation? I ask this because I used to perform chiller overhauls starting at age 18 and had been exposed to vast quantities of R-11, R-12, and R-22. I can't stop wondering if there's a connection. This is a great site and sincerely wish NONE of us had to suffer with these. Regards and hoping for a complete cure for all! [smiley=thumbsup.gif] [smiley=thumbsup.gif]

Title: Re: Hi From Fla - Wish We Were All Free From Clust
Post by nani on Oct 17^th, 2004, 9:23am

Welcome and sorry you are here. It would be great if someone found a cure. Don't know whether this is the same thing...I once poked a hole in the freon lines of an old fashioned freezer and it leaked out in my face. :-/ I apparently had clusters before that though. Just didn't know what they were.

Title: Re: Hi From Fla - Wish We Were All Free From Clust
Post by TxBasslady on Oct 18^th, 2004, 6:40pm

Welcome to the board.

I doubt that the refrigerant had anything to do with the CH. Lots of folks spend alot of time trying to pinpoint a reason or the cause.

As far as triggers.....it does seem that beer, while in cycle, is a definite no-no. Some episodics say that is the true test to see if your cyle is over.....if you drink one, and have no CH, then the cycle is over. As far as what triggers CH to begin with, is a bit of a mystery. Has to do with the Hypothalamus. Hell, I never heard of Hypothalamus till I got clusters.

Be cautious about overdoing it on the Imitrex. It can cause problems with your heart. If most of your hits are nightime.....try Melatonin. It works great for alot of us here. I take 6 mg before bed, and usually take 1 Excedrin Migraine a couple hours before bed. This has been a really good combination for me.

PF vibes,

Jean

Title: Re: Hi From Fla - Wish We Were All Free From Clust
Post by TxBasslady on Oct 18^th, 2004, 6:46pm

One more thing.......I have heard, and you can read some of the posts here that address the trex.....that you can get rebound headaches from the trex.

The trex doesn't work for everyone....but alot who have taken it for long periods of time or in large doses can better give the info on it. Most of the folks here who take it, use the 1/3 dose......read the link on the left that says "imitrex tip."

Good luck....

Jean