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New CH.com Forum › Supporter's Corner › Supporter's Corner › Updates & Kudos

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Updates & Kudos (Read 1774 times)

AdoreInVegas

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Posts: 51
Sin City, Baby!
Gender: female

Updates & Kudos
May 25^th, 2010 at 12:47pm

I want to extend a huge THANK YOU to everyone here for their tireless support and maintenance of this board.

Hubby (Paul) has been pain-free (PF) for almost a month now. He is armed to the gills with high-flo oxygen & an Optimask. He carries a full O2 tank in his truck at all times, a Sumvel injector in both our vehicles at all times.

This is what works for him (thanks to the suggestions from the kind folks on this site) when he gets hit:

1. O2 at 15 lpm for 15-20 minutes, additional 5 minutes after to make sure. Repeat once if abort doesn't occur.

2. Maintenance of Verapamil 240 mg three times a day, Depakote 500 mg at night.

3. Sumavel injector ONLY if O2 fails or is not readily available (i.e. if we go to a concert, he can't run out to the truck, so I keep the injector in my purse just in case).

Seems to us, the key to really "beating" this thing is to be prepared at all times, KNOW the disease, and stay with a physician who is willing to listen to what works for you.

Even though he's been PF for a month, (for the first time since last October), O2 tanks and Sumavel injectors remain consistently in place and full.

The members and moderators here are performing a truly valued service. It's also very interesting to me that no matter what message board/forum one goes to, there are always people who show up who have no forum etiquette (aka "social skills"), don't bother to READ THE BOARD and get to know it's members before posting a lot of repetition, and don't know how to post in a manner that allows senior members to get to know them prior to starting troll behavior. lol!

Anyway, can't thank everyone here enough. Smiley

~ Naturally Ostentatious ~

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Brew

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Re: Updates & Kudos
Reply #1 - May 25^th, 2010 at 1:50pm

Great post. Conveys a very high level of optimism to new members that this thing can, indeed, be managed successfully.

Quote:

1. O2 at 15 lpm for 15-20 minutes, additional 5 minutes after to make sure. Repeat once if abort doesn't occur.

I'd only suggest that this doesn't necessarily NEED to be 15-20 minutes. Just until it's gone + an extra few minutes. If it's taking 15-20 minutes to abort, he might want to consider a higher flow regulator (25 lpm minimum) along with hyperventilation.

Many of us are successful in aborting in 5-7 minutes or less with O2. The key is high flow and getting on it at the first sign.

"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

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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: Updates & Kudos Reply #2 - May 25^th, 2010 at 9:38pm Adore in Vegas, We just love it when new folks come here, ask questions, get answers, research the info we supply them with, ask more questions, get more info and finally get help. Finally find a doctor who will listen, finally get relief. We/I am so happy.
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Mosaicwench

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Near Milwaukee WI, USA
Gender: female

Re: Updates & Kudos
Reply #3 - May 25^th, 2010 at 10:02pm

AdoreInVegas wrote on May 25^th, 2010 at 12:47pm:

Seems to us, the key to really "beating" this thing is to be prepared at all times, KNOW the disease, and stay with a physician who is willing to listen to what works for you.

I was crushed when my hubby's neuro packed up and moved to Reno (we're in Wisconsin). He was like a member of our family. But we survived and found a new "Uncle Neuro."

I've said this a million times, but knowledge is power. Knowledge of this affliction allows the sufferer and the supporter to control how they react to the affliction, rather than be controlled by "it."

I commend you for your dedication and for sticking around here and letting us know how it's going.

“Be regular and orderly in your life, so that you may be violent and original in your work.”
~Flaubert

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Jackie CH.com Moderator CH.com Alumnus Offline Go For It!!! Posts: 5903 Goshen, IN Gender:	Re: Updates & Kudos Reply #4 - May 26^th, 2010 at 5:43pm AdoreInVegas, Thanks for thr update. It's always a treat to hear when things are imporving......posts like yours are what it's all about.
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