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Jeannie

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O2 no longer effective
Jan 4^th, 2012 at 9:38am

CH continues to throw new things at me. I used to be able to abort a hit, with oxygen, in five minutes or less. It has become less and less effective lately. I'm exhausted, trying to hyperventilate for sometimes twenty minutes, only to knock the pain back some. I'm relying more and more on Trex which is also sometimes not working very fast. I've been in cycle since March and I'm feeling a bit sorry for myself.

Any help would be appreciated.

Thanks,

Jeannie

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Guiseppi

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Re: O2 no longer effective
Reply #1 - Jan 4^th, 2012 at 9:46am

This happened to me last cycle. I started the "original" Batch regimen, which was just calcium, magnesium, and zinc, washed down with fresh squeezed lemonade, up to 4X a day. I never exceeded 3X a day and within about 30 hours the oxygen was knocking them down in 6-8 minutes again.

Are you on the Batch regimen yet? Might be worth a shot, hang in there Jeannie. Smiley

Joe

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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: O2 no longer effective Reply #2 - Jan 4^th, 2012 at 10:46am Thanks, Joe.
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Chad CH.com Hall of Famer Offline Posts: 738 Emmaus, PA Gender:	Re: O2 no longer effective Reply #3 - Jan 4^th, 2012 at 11:18am Batch's regimen + busting = possible shorter cycle, less severity, less hits. I barely even know I'm in cyle at the moment due to these two methods. O2 and Monster is there as my quick abort.
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LasVegas

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Re: O2 no longer effective
Reply #4 - Jan 4^th, 2012 at 1:15pm

Hi Jeannie,
Sorry to read you are still in cycle. Sad

Please forgive me if I offer the following advice, but just to cover the bases I will ask...

Have you noticed a difference in your timing of getting on the o2 compared to what was successful in the past?

Hyperventilate with complete inhale and complete exhale using 40 lpm?

Using NRB Mask?

Sitting upright and/or standing position while using o2?

Completely slam energy drink before, during or after use of o2? I've experienced with this and have noticed different results based on before, during, or after.

Re-read all the o2 info for addtl pieces of info?

Patience is tough, but must exist for success with any CH treatment!

Hang Tough! Wink

-Gregg in Las Vegas

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Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019

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Batch

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Re: O2 no longer effective
Reply #5 - Jan 4^th, 2012 at 1:22pm

Hey Jeanie,

Try taking two each tablets/softgel capsules of the following...

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I buy the above at Costco for $35 or 20 cents a day for a 5 month supply...

It's effective as a preventative for 70% of the CH'ers who try it...

If it works for you like it does for me... you won't need the oxygen... My home oxygen therapy kit with Flotec InGage™ 0-60 liter/minute regulator, Carnét Oxygen Demand Valve and O2PTIMASK™ sits in the bedroom closet under a plastic bag...

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I haven't touched it since early October 2010... The M60 oxygen cylinder I bought is empty... Go figure...

Follow Joe's suggestion with the lemonade while you're taking the above... that should help elevate your arterial pH and make your oxygen therapy more effective.

Please let us know how this regimen is working for you after a couple weeks. Most CH'ers have a favorable response to this regimen within the first 10 days... some as fast as the first or second day... and nearly all who respond to this regimen are pain free by the end of the second week.

Take care,

V/R, Batch

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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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Jeannie

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Re: O2 no longer effective
Reply #6 - Jan 4^th, 2012 at 3:54pm

I've been doing everything the same as always, regarding getting to the 02 and how I breathe while on it, and have started taking the D 3 regimen. ( I could live without burping fish all day )

I believe that my CH has changed and I am now dealing with being chronic. I only had about a 5 week break between my last cycle and this one. I know it is just a matter of finding a way to control it and deal with it.

Thanks for the replies.

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Barry_T_Coles

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Re: O2 no longer effective
Reply #7 - Jan 4^th, 2012 at 6:35pm

Hi Jeannie

My high cycle early last year turned much the same as you describe; the O² was taking longer to work than previous & they where coming back quicker, what I ended up doing at night time which are always the worst was by using a cold gel pack on the CH side along with the O² until the hit had gone & then laid down with a fresh cold pack, it worked first time I tried it & continued to work until the cycle ended.
I have never had a high cycle that was the same as the last, it's a matter of being aware that the beast can & does change & we need to be ready for when it does.

Give it a go & see what happens.
Cheers
Barry

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LasVegas

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Re: O2 no longer effective
Reply #8 - Jan 4^th, 2012 at 6:44pm

Barry_T_Coles wrote on Jan 4^th, 2012 at 6:35pm:

Hi Jeannie

My high cycle early last year turned much the same as you describe; the O² was taking longer to work than previous & they where coming back quicker, what I ended up doing at night time which are always the worst was by using a cold gel pack on the CH side along with the O² until the hit had gone & then laid down with a fresh cold pack, it worked first time I tried it & continued to work until the cycle ended.
I have never had a high cycle that was the same as the last, it's a matter of being aware that the beast can & does change & we need to be ready for when it does.

Give it a go & see what happens.
Cheers
Barry

That is a fantastic statement! Wink

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wimsey1

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Re: O2 no longer effective
Reply #9 - Jan 5^th, 2012 at 7:43am

Jeannie, I'm truly sorry this is happening to you. I can only tell you that when I went from episodic to chronic, I experienced the same "settling in period" many experience at the beginning of episodic cycles. Hit and miss, on time and intensity. It did get worse before it settled in, and then I could predict hourly what the next hour or two would be like. Once that happened, I found abortives worked again...at higher rates and doses though. So it seems even we chronics have high and low cycles over time. The high cycles require more of everything. The low cycles tend to hover around KIP 2-3 and yield more quickly. I added two Rx abortives to my arsenal, Trex and Migranal. They cannot be taken within 24 hours of each other, but they both work and I alternate use. It doubles what my insurance company allows /month, and I am convinced helps avoid the rebounds. Hang in there. God bless. lance

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Jeannie

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Re: O2 no longer effective
Reply #10 - Jan 6^th, 2012 at 9:38am

Yesterday was awful. I started getting hit at around 11 pm Wednesday night. It continued every 40 to 60 mins till about 11 yesterday morning. I finally gave myself a Trex injection which stopped the HA but caused me to vomit for two hours. I think that the fish oil is making me sick to my stomach. I have been having trouble tolerating it and Trex has never before made me sick.

Randy was truly wonderful through it all. He had taken the day off and helped me immensely with my job. I don't think I would have made it through the day, had he not been here.

As much as I hate it, I'll be calling the neuro for a steroid taper. It will likely have to be Decadron as Pred never seems to do the trick for me. You'd think that after 31 years, Id have this all figured out.

I'm truly grateful for my husband, family and everyone here.

Jeannie

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"It's all a grand illusion when you think you're in control." ~ Kenny Chesney

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: O2 no longer effective Reply #11 - Jan 6^th, 2012 at 6:12pm Damnit Jeannie I don't like that. Joe
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Batch

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Re: O2 no longer effective
Reply #12 - Jan 6^th, 2012 at 6:30pm

Hey Jeannie,

I agree with Joe... a reaction like that is a bummer... Try skipping the Omega 3 Oil completely and cut the calcium citrate dose in half... but keep the vitamin D3 dose at 10,000 IU/day... This should help calm the troubled tummy... and shouldn't affect your use of oxygen therapy.

Take care and please keep us posted.

V/R, Batch

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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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LasVegas CH.com Sponsor Offline Episodic CH since 11 yrs old, now 50. Posts: 2020 north of the 60th parallel Gender:	Re: O2 no longer effective Reply #13 - Jan 9^th, 2012 at 11:17pm How are you doing Jeannie? -Gregg in Las Vegas
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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: O2 no longer effective Reply #14 - Jan 10^th, 2012 at 9:53am On day five of a 15 day Decadron taper. Haven't had a CH since starting it. I'm not a very nice person to be around though. I feel sorry for my husband.
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LasVegas CH.com Sponsor Offline Episodic CH since 11 yrs old, now 50. Posts: 2020 north of the 60th parallel Gender:	Re: O2 no longer effective Reply #15 - Jan 10^th, 2012 at 10:07am Hang in there
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Batch

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Re: O2 no longer effective
Reply #16 - Jan 10^th, 2012 at 11:52am

Hey Jeannie,

That's wonderful news. The steroid taper tends to work much more effectively when you've elevated your 25(OH)D level with vitamin D3.

If you haven't already restarted the anti-inflammatory regimen less the Omega 3 fish oil, you might want to consider talking to your neurologist about doing so before the steroid taper ends...

No fun falling back into the grasp of the beast when it really isn't necessary.

Take care and please keep us posted.

V/R, Batch

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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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