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Title: Hello everyone! Post by sergio_demoraes on Jul 30th, 2006, 4:40pm I'm so glad I found this place! let me introduce myself: Name is Sergio, 49, born and raised in Brazil, living in Jacksonville, Florida with my wife Leia, no kids, and having CH for more than 30 years! I have learned a lot about CH in all these years, but after coming to this place, for the first time, I have the feeling that I'm not alone. Congratulations for this wonderful job. Actually, after going through the whole website, I start reading about "The Devil", and it made me cry. I'm here for two reasons: I'd like to learn more about CH, and help in anyway I can. So, here is my first hint about dealing with CH: First, no matter what kind of medication you are taking, you get have the right attitude towards your CH. I used to not accept the fact that I have this CH. I used to complain a lot, to ask "why me?", and I notice that this would only make the pain worst and last longer. I had times when I used to break everything in the house and bang my head in the wall. Many times I had seriously considered killing myself. Not to mention the discrimination, job losses, bankrupticy, broken marriages, you name it. One day, I change my attitude and decided that I will take control. And I started looking for ways to better understand myself and my pain. Started with yoga and meditation. And Tai-chi-chuan. Now, I still have CH. But I'm in control. When it wakes me up in the middle of the night, I don't panic anymore. I take my medication, go to the living room, so my wife can sleep, and I talk to this Ghost, and I say: Ok, since you are back and I can't sleep, you take your time, cause I know you won't stay forever. In the meantime, I'll do yoga and meditate. And, I try my best to relax and don't pay attention to the pain. Usually, it goes away in 15 minutes(used to take hours). Your attitude is very important, don't let the CH take control of you. Thank you all for this opporttunity! Sergio :) |
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Title: Re: Hello everyone! Post by Linda_Howell on Jul 30th, 2006, 4:51pm Welcome Sergio. Yep attitude is a good thing in fighting this beast. I've been chronic for 19 years now, but there is always a lot we can and do learn about this condition. If you would like to help go here: http://www.ouch-us.org/joinouch.htm OUCH is always on the look-out for volunteers. Linda |
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Title: Re: Hello everyone! Post by LeLimey on Jul 30th, 2006, 5:24pm Hi Sergio I like your attitude! What meds are you currently taking? Have you ever tried Oxygen? Looking forward to hearing more from you :) Helen |
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Title: Re: Hello everyone! Post by sergio_demoraes on Jul 30th, 2006, 5:28pm Thanks Linda, I'll join them. Sergio |
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Title: Re: Hello everyone! Post by sergio_demoraes on Jul 30th, 2006, 5:44pm Hi Helen! Yes, I tried oxygen, used to have in my car, at home, in the office, but...no success... I have tried all available and legal medication, and what is working is Ormigrein. This is made in Brazil and Netherlands only, by Organon Laboratories. It has Ergotamine 1mg, Acetaminophen 220mg, Caffeine 100mg, Atropine 12.5mg and Hioxiamine 85.5 mg. I am taking 2 pills in the morning and 2 before sleep. But, when the Cluster comes, then I take as much as 8 pills, and the side effect is terrible(lower the blood presure, nausea, etc). That's why I believe that attitude is so important, cause you not gonna need that much medication. But sometimes attitude fails also... Tell me about your experience, what works for you... Sergio |
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Title: Re: Hello everyone! Post by ShaneM on Jul 30th, 2006, 8:41pm Hey Sergio, Welcome! You're right. A good attitude can come and go. But it sounds like you have a pretty good handle on it. So glad you're with us. Shane |
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Title: Re: Hello everyone! Post by TxBasslady on Jul 30th, 2006, 9:07pm Welcome, Sergio ;) Thanks for joining us....hope you enjoy your stay. Usually someone here 24/7. Just like Motel 6...."we'll leave the light on, for 'ya." PF vibes, Jean |
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Title: Re: Hello everyone! Post by TxBasslady on Jul 30th, 2006, 9:14pm Oops...I forgot to tell you that your wife is welcome to join the board, also. We have a Supporter's Corner where alot of supporter's and sufferer's post. It would be great if she wishes to share her thoughts from a supporter's view. It's a great read.... Jean |
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Title: Re: Hello everyone! Post by chewy on Jul 30th, 2006, 10:54pm Quote:
A big AMEN to that! |
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Title: Re: Hello everyone! Post by Jasmyn on Jul 31st, 2006, 4:37pm Welcome Sergio and thanks for the wise words. :) |
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Title: Re: Hello everyone! Post by Richr8 on Jul 31st, 2006, 7:29pm on 07/30/06 at 16:40:21, sergio_demoraes wrote:
Woohooo! More tools to use against the beast. This, attitude, has been a short coming of mine in the fourteen years I have experienced CH. Nice to see further confirmation that we can influence our experience by remaining in, or taking, control. BTW-Welcome, and sorry you had to find us. Now that you, have I hope you will stick around to learn and help as needed. |
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Title: Re: Hello everyone! Post by marlinsfan on Aug 2nd, 2006, 9:33pm Bemvindo, Sergio! Tudo bem? I live in Hollywood, FL. You are right, attitude and mental control does wonders. Did you use oxygen with a non-rebreather maks? It works great for. Abraco, Jose |
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Title: Re: Hello everyone! Post by Guiseppi on Aug 3rd, 2006, 1:53pm Welcome Sergio, please do read the link to the left on Oxygen. Many people are prescribed oxygen but aren't told how to use it corrctly. At low concentrations it doesn't seem work well. It might be worth trying it again as many of us have found success with it using the non-rebreather or "cluster" masks. Again a big welcome to you, hope you find something of value here. Guiseppi |
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