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Leon CH.com Newbie Offline I Love CH.com! Posts: 4 Far away in Israel Gender:	Hello:) Nov 4^th, 2008 at 1:33am Hi my name is Leon and I'm 17 years old. I've been suffering from CH for the last 4 years and only few weeks ago I found out that i suffer from CH. Is there anyone from Israel in this from[just curious]?
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George

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Re: Hello:)
Reply #1 - Nov 4^th, 2008 at 1:43am

Welcome, Leon.

We do have at least a couple of Israelis here. I'm hoping they'll respond to you very soon.

Meantime, can you tell us a bit about the medications you've tried, and the approaches your doctors have taken toward your CH? Could be we could give you a bit of input that may help you in managing your attacks.

Again, welcome. My daughter is also 17, and I first became acquainted with CH when I was thirteen--so I have an interest in helping young folks learn to live with this thing.

All the best,

George

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Leon

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Re: Hello:)
Reply #2 - Nov 4^th, 2008 at 3:49am

My case is a bit strange...sumatriptan[I tried nasal Immitrex] and oxygen seem to have no effect on me.
My last cycle was from the end of August till the end of October. But a few days ago[like a week later] my cycle began again. Now I'm taking Prednisone to break it and it seems to work, and also I'm taking deppalept and calcium channel blockers.

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DennisM1045 CH.com Alumnus Offline One wave at a time! Posts: 3437 Haverhill, Massachusetts, USA Gender:	Re: Hello:) Reply #3 - Nov 4^th, 2008 at 12:04pm Hi Leon! On the internet you are never far away Welcome to the one place when you can be assured of finding understanding and experience with what you are up against. Welcom home... -Dennis-
Back to top	Where there is life, there is hope. Where there is Oxygen, you must use proper caution. So be safe, don't smoke while using O2. Kill the pain and not yourself. IP Logged

Rina

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Re: Hello:)
Reply #4 - Nov 4^th, 2008 at 12:41pm

Hi Leon.

I was on Prednisone a couple of years ago. I could not continue the treatment because of the side effects. It is thought to be very succesfull if you can stay on it for the whole course. Make sure that you read independantly (FDA) on side effects and chat to your family about it, so that they can look out for signs that you miss and also to bear with you while you manage these. It is only temporaly but some can be quite severe.
Good luck

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Rina CH.com Newbie Offline I Love CH.com! Posts: 9	Re: Hello:) Reply #5 - Nov 4^th, 2008 at 12:46pm A tip on managing side effects of prednisone is possibly to take a supplement to support adrenal functions. Liver and Pituary glands take a lot of strain. Also entire immunty systems is attacked. Eat well and take lots of supplements.
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thebbz Ex Member	Re: Hello:) Reply #6 - Nov 4^th, 2008 at 1:33pm Yep B vitamins, magnesium and calcium. welcome the bb
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Linda_Howell

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Re: Hello:)
Reply #7 - Nov 4^th, 2008 at 1:51pm

According to the "where we live" page there are 24 people in Israel.

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You say that 02 didn't work for you. Can you explain to us exactly how you were using it? How high did your regulator go? What kind of a mask were you using and things like that.

02 works so well for so many, we may be able to tell you what you were doing wrong, if anything and then steer you in the right direction.

Linda

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

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Scott Lawrence

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Re: Hello:)
Reply #8 - Nov 4^th, 2008 at 3:32pm

Hey Leon,

I can't really give you any advice, other than to listen to everyone on here, they know what there talking about....this is really just to say that I'm thinking of you, I only recently got diagnosed as well after 4 years of misery. If you need anyone to talk to, feel free to PM me.

Take care, keep your chin up, and don't let it defeat you!!!

Scott

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“Understanding is the first step to acceptance, and only with acceptance can there be recovery.”
“I enjoy convalescence. It is the part that makes the illness worth while.”

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Leon

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Re: Hello:)
Reply #9 - Nov 5^th, 2008 at 1:32am

Linda_Howell wrote on Nov 4^th, 2008 at 1:51pm:

According to the "where we live" page there are 24 people in Israel.

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

or

You say that 02 didn't work for you. Can you explain to us exactly how you were using it? How high did your regulator go? What kind of a mask were you using and things like that.

Linda

I was using it properly I'm pretty sure about it, I was using the proper mask[the one with the bag] with dosage of 5-10 lpm.

The side effects of prednisone sucks...My stomack is exploding from pain but it only for a couple of days and it's much better than having CH.

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ClusterChuck

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Re: Hello:)
Reply #10 - Nov 5^th, 2008 at 2:55am

Leon wrote on Nov 5^th, 2008 at 1:32am:

I was using it properly I'm pretty sure about it, I was using the proper mask[the one with the bag] with dosage of 5-10 lpm.

BINGO!!!

THAT was your problem! You were not using a high enough flow rate! Most of us need AT LEAST 15 LPM in order to get good results! Many of us go much higher ... Like 40 or so LPM.

OXYGEN RULES!

Try it again. It is worth it!

Good luck!

Chuck

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CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame.

Keep fire extinguisher available, and charged.

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MPMIII CH.com Veteran Offline Posts: 112 Alabama Gender:	Re: Hello:) Reply #11 - Nov 5^th, 2008 at 7:20am Leon, Oxygen never worked for me until I got a real non-rebreather mask and hit at least 15 lpm. The mask that came with the tank for $3 would let too much outside air in. I finally bought a clustermasx and it made all the difference. Keep trying. Best of luck. Regards, Malcom
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thebbz Ex Member	Re: Hello:) Reply #12 - Nov 5^th, 2008 at 6:29pm Many only get relief from injectable imitrex. Pills and inhalers dont get it done. Try the 02 again correctly. the bb
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Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: Hello:) Reply #13 - Nov 5^th, 2008 at 7:08pm Quote: BINGO!!! A big old YEP on the "bingo" Leon. THAT was your problem. I don't have a clue on what to tell you to get a higher regulator in Israel....but you definetly need one.
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