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Gator Bill CH.com Newbie Offline When the going gets tough...the tough suck O2! Posts: 22	Just found u Sep 14^th, 2010 at 9:59pm Hi, I am a newbie who is celebrating 30 years of CH.
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Just found u Reply #1 - Sep 14^th, 2010 at 10:04pm Ouch...hardly a newbie huh? Really glad you found us. Do you have a decent treatment regimen yet? Oxygen for aborting, some good prevent meds? Hoping the beast aint beating on you currently. Joe
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Gator Bill CH.com Newbie Offline When the going gets tough...the tough suck O2! Posts: 22	Re: Just found u Reply #2 - Sep 14^th, 2010 at 10:08pm just 02. used imitrx for several years but seemed to lose effectiveness and insurance started screwing me. been in cluster for about 4 months now.
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Just found u Reply #3 - Sep 14^th, 2010 at 10:11pm Thank goodness you have the 02, it's all but eliminated my use of the imitrex. Just as fast and you don't get the "trex hangover" afterwards. Is the 02 keeping it mostly under control? Have you tried any prevent meds in the past to reduce hits? Verapamil, Lithium, Topomax etc.? Joe
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Gator Bill

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When the going gets tough...the
tough suck O2!

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Re: Just found u
Reply #4 - Sep 14^th, 2010 at 10:33pm

sorry, for the delay...i've been exploring the posts. i'm new to message boards.

i have tried different meds over the years but none seemed to work.

the break between episodes seems to be getting smaller the last couple of years. i guess i may be moving to chronic.

I now have less times I can work out, play tennis, golf, etc....much less enjoy a beer.

it gets depressing when i think about it.

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Just found u Reply #5 - Sep 14^th, 2010 at 10:44pm No worries you have a boat load of reading to do. Also, when you get a chance, check out clusterbusters.com alternative treatments that have been showing some good results for CH'ers for whom traditional meds weren't cutting it. Joe
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Gator Bill CH.com Newbie Offline When the going gets tough...the tough suck O2! Posts: 22	Re: Just found u Reply #6 - Sep 14^th, 2010 at 10:57pm Thanks, Joe, for making me feel welcome. I'm in florida and calling it a day. I want to talk with you later tho, I met my wife of 28 years while living in San Diego.
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bejeeber

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Re: Just found u
Reply #7 - Sep 15^th, 2010 at 2:30am

Hey Bill, glad to see that you've been greeted right off by Giuseppi - like myself he is a 30+ year CH'er, and he's someone who has done a lot of observing and learning of what really works for beating CH.

I think I can safely say that he and I both have been helped tremendously by info and advice found here, and I can see he's starting to distill some of the most pertinent bits for you, so you're in good hands. Giussepi is kind of like the Allstate of cluster headaches. Cheesy

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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wimsey1

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Re: Just found u
Reply #8 - Sep 15^th, 2010 at 8:20am

Hey Bill, welcome! Good to hear another FL boy-GO GATORS! Or are you one o' those Tallahassee/Miami wusses? Wink

Anywho, same thing happened to me. Years of episodic then went chronic for the past 3 years. Very depressing but the people on this site are amazing. They helped me more than I could have imagined. So hang around and hang on. Just one quick question: we've learned a lot over the past years on dosage amounts and how we need much higher rates than the med is usually prescribed. For example, verapamil as high as 980mg or more. O2 in the 25-60lpm range. That kind of thing. And the caffeine/taurine drinks! They're the best! Let us know what you've used and in what amounts. Good luck and God bless! lance

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Gator Bill CH.com Newbie Offline When the going gets tough...the tough suck O2! Posts: 22	Re: Just found u Reply #9 - Sep 15^th, 2010 at 7:49pm Thanks bejeeber and Lance. Good to meet you. Lance, I'm in Winter Haven. Where are you? Do you have a good Dr.? What's the deal on caffeine/taurine?
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Linda_Howell

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Re: Just found u
Reply #10 - Sep 15^th, 2010 at 10:40pm

Caffeine is a vasoconstrictor which is exactly what we need when under attack. The Taurine acts along with it to further maximize it's effect. Cold packs/showers are also vasoconstrictors. All cheap alternatives if you have nothing at all. Strong coffee is my personal favorite since I couldn't get through a day w/o it anyway.

Welcome Bill. I'm 23 yrs. chronic. But who's counting, right? Sad

Linda

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« Last Edit: Sep 15^th, 2010 at 10:41pm by Linda_Howell »

Hurt people.....hurt people. Think about it.

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Mike NZ

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Oxygen rocks! D3 too!

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Re: Just found u
Reply #11 - Sep 16^th, 2010 at 12:23am

Linda_Howell wrote on Sep 15^th, 2010 at 10:40pm:

Caffeine is a vasoconstrictor which is exactly what we need when under attack. The Taurine acts along with it to further maximize it's effect. Cold packs/showers are also vasoconstrictors. All cheap alternatives if you have nothing at all. Strong coffee is my personal favorite since I couldn't get through a day w/o it anyway.

Taurine acts as a calcium channel antagonist -

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

This is how verapamil a great CH preventivie works too

So the combination of the two is probably why these types of energy drinks help with a CH.

And welcome Bill from someone who will tomorrow be celebrating 4 months of CHs.

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wimsey1

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Re: Just found u
Reply #12 - Sep 16^th, 2010 at 7:23am

Hey Bill. I'm not in FL now. I was...right next door to you in Auburndale for 9 years. Before that I was in Palm Bay, and before that, Jacksonville. As to a good doctor, I had a neuro in WH who knew immediately what I had, but I can't remember his name. There are a lot of good clinics around, and if you have to, you can even try Tampa or Orlando as you know. Sorry I couldn't help there. Just good to hear a voice from "home." Blessings! lance

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