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Cluster Headache Help and Support >> Getting to Know Ya >> Long time suffer and lurker.
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Message started by B.Baer on Dec 20th, 2008 at 9:33pm

Title: Long time suffer and lurker.
Post by B.Baer on Dec 20th, 2008 at 9:33pm
Hello all, I'm from Northeast Pa., and have been diagnosed for about 15 years, episodic, and currently in cycle. My wife found this site approx. five years ago and it helped us greatly. Me in gathering information that has helped me better cope, and her to better cope with me. Thanks to all and keep up the good work and keep up the good fight. I am currently in my own battle with the cursed beast and will udate when I can.
My wife would post on the old site from time to time, I never did.

Title: Re: Long time suffer and lurker.
Post by Just Plain Carl on Dec 20th, 2008 at 9:38pm
Welcome B.
    Sorry you are back in cycle.  Just in time for the holidays.  That sucks.

So what are you using to cope with?   I hope it is working for ya.

                                    PFD's
                                     JPC

Title: Re: Long time suffer and lurker.
Post by Guiseppi on Dec 21st, 2008 at 1:27am
Welcome to the board, danged sorry the beasty hasn't lost your address. What Carl said, let us know what you're using, how it's working! Here's hoping for a short and sweet cycle.

Joe

Title: Re: Long time suffer and lurker.
Post by Mosaicwench on Dec 21st, 2008 at 8:30am
Glad you are here with us and not alone.  Send your wife in for a supporter boost.  We supporters can use the help, too!

So sorry you're dancing with that bastard again.

Title: Re: Long time suffer and lurker.
Post by barry_sword on Dec 21st, 2008 at 8:40am
Hi B. and welcome. Sorry the beast is taking another round with you, but we are all here to help you in any way we can.

Like already said, let us know what you are taking to help fight this monster. Have you tried o2 at all as a abortive? o2 is the #1 abortive used by approximately 70% of us here.

100% o2 at at least 15 lpm with a non-rebreather mask. Get on it at the very first sign of an-oncoming hit.

Welcome to your new home, and thank your wife for finding us, as she is already welcomed here as a supporter.

 Barry :)

Title: Re: Long time suffer and lurker.
Post by B.Baer on Dec 21st, 2008 at 10:02am
Thanks guys, yeah it sucks, I am currently on Sansert low dose and Topamax low dose, first time for both. Does allow me to get about six hours of sleep per night on a regular basis. Not bad, if I must say so myself. I only discovered O2 three years ago as an abort. Didn't know enough about it, tried the crappy re-breather they provide with the tank etc. you know the drill. Read like crazy here on the site, fought with the insurance companies, etc. you know the drill, used to break down the Imitrex kits into three shots. My neruologist actually sent a nurse to my house to see how I did it, and see if it was poss. and safe. Neruo. since retired but new one is just as good. I find the faster I can cope, and fall into some kind of predictable cycle the better and more efficient I can become, my sales job requires long driving time between sales calls. An M-tank and Optimask strapped securely in the trunk with the back seat rest pushed to the front, run the hose out and I'm good to go. The e-tanks where a real pain in the butt.
I've managed to get it down from 8-10 CH in a 24 Hour period, to about 3-4, with most occuring between the hours of 2pm and 10pm.
Great schedule for work, not so handy for the social life if you know what I mean ;D. I have tried just about everthing over the years, really don't like the drug route but am willing to give new things a shot, after long discussions with a competent neuro. I hate using them, always will but will try and learn as much as I can with each cycle so some day we can all forget these damn things forever. O2 has become my go to and I am forever thankful for sites like this for really explaining it, I have gotten a set up that allows up to 15 LPM and get my fastest results at that level. Again, the Optimask was also very helpful and greatly reduced the times, needed. I do find my M-tanks won't hold 15L flow once down to one quarter of a tank, so I rotate that to the back and use it to taper at 7 or 8 LPM for a few mins. it reduces the hang-over type (re-bound?) I can some times experience. Sorry, kinda long winded, but I never used to post at all, guess I'm trying to make up for lost time.
Thanks again guys. Keep up the fight.

Title: Re: Long time suffer and lurker.
Post by Just Plain Carl on Dec 21st, 2008 at 10:25am
Sounds like you have a pretty good handle on things.

Hope you can dump the MF soon.

                      PFD's
                       JPC

Title: Re: Long time suffer and lurker.
Post by Garys_Girl on Dec 21st, 2008 at 4:16pm
Welcome!  Make up for as much time as you want!  Sounds like a great set-up - glad you shared.  :)

Always here for a vent too.

Laurie   [smiley=wave.gif]

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