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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › Hi fellow ch friends!

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Hi fellow ch friends! (Read 898 times)

Rufus

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Hi fellow ch friends!
Jan 17^th, 2011 at 11:39am

I am from El Paso, TX and would like to know if there are any other people in this city who have the same ch problem as I. My wife and I read that only about 1 percent of people have this problem. We were just wondering if there are others in El Paso? And to all you out there in other parts of the country and the world, I feel your pain. Trust me. You are not alone because I do care.

Thanks,

Rufus :)

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Guiseppi

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San Diego to Florida 05-16-2011

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Re: Hi fellow ch friends!
Reply #1 - Jan 17^th, 2011 at 12:10pm

Under the meetings section, Dallas Denny is currently trying to organize a meet and greet down your way, sometime in the spring! Having met the man, I can assure you he is NOT an axe murderer, and actually a pretty cool guy, even if he is from Texas! Grin

I just got back from a big get together in Saint Louis and can assure you NOTHING compares with hanging out with your cluster buddies.

Welcome to the board, do you have an effective treatment regimen? Specifically oxygen? A good prevent med, Verapamil, Lithium, Topomax etc.? A decent doc who understands and actually cares? Glad you found us, hope you're currently on top of the beast!

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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Rufus

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Re: Hi fellow ch friends!
Reply #2 - Jan 17^th, 2011 at 4:15pm

Thanks Joe. Always good to hear from another person. You also seem to have a great sense of humor with that Texas comment. :) It seems I have tried everything. I have been going through this for about twenty years now. I am kind of a veteran. The type of person that can now walk into the emergency room and tell the physicians more than they know about this subject. It seems Prednisone is what works for me. I go on a regiment of 10 mg per day. I do this for 5 days, 4x a day. Then tapper off to 3 times a day and so on until the last 5 days down to one time a day. Was at the hospital just last weekend educating them. lol

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Guiseppi

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Re: Hi fellow ch friends!
Reply #3 - Jan 17^th, 2011 at 4:34pm

Yeah pred works great for me as a prevent, but only as long as I'm on it. As soon as I go off it, BAM! Some people are lucky enough that a short pred burst will abort an entire cycle. I use it now as a transitional med, when a cycle starts, I start on pred while I build up on my prevent, lithium. Lithium takes about 10-14 days to really kick in for me, by then I'm off the pred. Careful with the pred, long term use can really cause havoc with several of your internal organs as well as your joints.

Have you had a chance to try high flow oxygen? 32 years of these stupid things and nothing comes close for speed of abort, inexpensive cost and ease of use. Has almost eliminated my use of imitrex.

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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Rufus

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Re: Hi fellow ch friends!
Reply #4 - Jan 19^th, 2011 at 6:12pm

I tried oxygen but it only intensified the pain for some reason. When the oxygen went through my nostrals my pain got worse. I am experiencing one right now even though I am on Prednisone. And during the daytime. Which is strange because mine usually attack at night. Thank God I have an understanding boss. He offeredto let me go home. I told him it really didnt matter because the pain is here and wont go away. I want to thank you very much for your responses. You have been a god send just having someone to talk with.

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Guiseppi

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San Diego to Florida 05-16-2011

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Re: Hi fellow ch friends!
Reply #5 - Jan 19^th, 2011 at 7:02pm

Sounds like you were using nasal canulas for the oxygen delivery? That almost guarantees failure. To get relief with 02 you need a non re breather mask, and a high flow regulator, minimum 15 LPM, some go up to 45 LPM to get relief.

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

This link will show the right way to use 02, makes all the difference in the world.

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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Ant CH.com Junior Offline I Love CH.com! Posts: 44 Utah Gender:	Re: Hi fellow ch friends! Reply #6 - Jan 19^th, 2011 at 7:39pm Rufus, Nice to hear from you. Its good to see there are others out there like us. I found this forum today and I already feel a bit healthier mentally and I feel like I'm not alone. Im going to try the O2 as well. Its safe and very effective from what everyone is saying! Look forward to talking with you! Ant
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