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Living with CH (Read 1285 times)

Craig A. CH.com Newbie Offline Life is Fun..... Posts: 14 Bozeman Gender:	Living with CH Feb 10^th, 2012 at 10:52am Hello all, I started getting these CH in 2006. Doctors did not know what to do but give me pain meds. In 2011 I went to the Mayo Clinic, they put me on prednisone and they stopped for 6 months. Now they have returned and now back on the prednisone. Hope they stop........
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Guiseppi

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Re: Living with CH
Reply #1 - Feb 10^th, 2012 at 11:01am

Welcome to the board Craig. Start with this link:

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

You'll see it talked about a lot on this board. I kill my attacks in about 6-8 minutes huffing oxygen. Beats the old 90-120 minute rides I used to take with beasty.

Check out the post on the meds board, "123 pain free days and I think I know why." It's a daily vitamin anti inflammatory regimen that's reducing and even eliminating attacks for many. The nice thnig it it's a great regimen even without CH!

Glad you found us, start reading like crazy. Knowledge is your best ally in the battle against the beast.

JOe

« Last Edit: Feb 10^th, 2012 at 11:02am by Guiseppi »

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

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Bob Johnson

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Re: Living with CH
Reply #2 - Feb 10^th, 2012 at 11:22am

Something is missing. Are you saying that Mayo discharged you with only Pred?, with no other med?, without instructions about cointinuing treatment?

Treatment of Cluster is more extensive and involved than this. Pred stops attacks rapidly but there are other meds for long term use which should be part of the picture.

Scan the PDF file, below, to see the range of treatments. Suggest you print this article and use it as a discussion tool with the current doc.

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

(96 KB | 16 )

Bob Johnson

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Craig A. CH.com Newbie Offline Life is Fun..... Posts: 14 Bozeman Gender:	Re: Living with CH Reply #3 - Feb 10^th, 2012 at 2:19pm Thank you, Yes I was given verapimil 720 mg a day. I have tried oxygen with very limited help. My neck is really stiff and sore. Is that normal? Also on the verapamil it makes my ankles swell????
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Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: Living with CH Reply #4 - Feb 10^th, 2012 at 4:04pm At that dose, possible your BP has decreased to the point where there is some fluid accumulation. Run this by the doc. A modest reduction may be the answer and/or some time for your body to adjust to this dose. Hope it works for Verap is the first choice preventive.
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Craig A. CH.com Newbie Offline Life is Fun..... Posts: 14 Bozeman Gender:	Re: Living with CH Reply #5 - Feb 10^th, 2012 at 4:22pm Thanks Bob, the doc did put me on chlorthalid 25 mg which has helped with the swelling but my neck is still sore and tight. Also he gave me fluoxetine 30 mg. I guess to make me happy?
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thebbz Ex Member	Re: Living with CH Reply #6 - Feb 10^th, 2012 at 10:18pm Quote: My neck is really stiff and sore. Is that normal? Ya man, bout as normal as it gets. Bob and Joe give excellent advice. Ditto. all the best the bb
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wimsey1

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Re: Living with CH
Reply #7 - Feb 11^th, 2012 at 8:37am

Quote:

I have tried oxygen with very limited help.

When we hear this, especially as it relates to hospital intervention, our little antennae start a'twitchin. That's because generally the mask was a rebreather, flow rate was too low, and no one taught you how to acheive hyperventilation which is what we want to make happen. I've even run into medical professionals who think this is a bad thing and try to talk me out of it. I have find proper flow, equipment and technique of O2 to be key and amazingly effective. What exactly was your experience with it? It can be your first, bestest and most loved friend...even if it is ugly green. Blessings. lance

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ttnolan

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beats me

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Re: Living with CH
Reply #8 - Feb 12^th, 2012 at 5:22pm

For many, many years I performed well at work and elsewhere with just O2 and a small complement of drugs. But it was getting the oxygen right that changed me from a depressed veg to a happy go-getter
Do everything you can to get it right, it can be a real game changer.
And for prednisone, has some very bad long term effects, and for me tended to be unreliable. I certainly would prefer not taking that route when considering its mixed track record along with all the nasty long term effects. Lips Sealed

« Last Edit: Feb 12^th, 2012 at 5:27pm by ttnolan »

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