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FoxNZ

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Rotorua, NZ
Gender: female

Confused
Sep 4^th, 2014 at 3:10pm

Hi all,
My husband has been on the D3 regimen for 4 weeks now. For a week he was pain free and then the attacks came back. He had them for about 3 days then was pain free for a few days again, then more attacks. The other day he came home from work and I took one look at his face and thought he was in the throws of a massive attack but he said his face had been like that all day and no inkling, then the next day - boom a massive attack and had three that day/night. I guess my question is there any suggestions of the D3 regimen I should be trying? He has done the loading dose and the two weeks of 20,000 and is just finishing the 15,000 so will be going down to the 10,000. We asked for the blood test but our doctor refused - so I am looking at doing it ourselves at the laboratory. I am also going to really push for getting oxygen. He is using the Sumatriptin injections but he is using a lot of them and he shouldn't be but when the pain is happening he doesn't care he just wants it gone.
Thanks for listening guys!

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Mike NZ

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Oxygen rocks! D3 too!

Posts: 3785
Auckland, New Zealand
Gender: male

Re: Confused
Reply #1 - Sep 4^th, 2014 at 6:27pm

The D3 test here in NZ does not seem to be funded other than for a few cases where there is significant evidence of someone being deficient. I was told that the reason for this was that too many doctors were requesting it for patients and "the powers that be" decided that the cost did not match the benefits.

However you can go direct to the various labs that do blood tests around NZ. Just look on the website for your local provider or pop in and ask.

Do get the oxygen sorted out. I posted how I did it here in NZ at Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

.

For your husband it sounds like he is on the borderline for his D3 being at the right level, so it is sometimes effective, sometimes not. D3 levels will vary naturally over time with things like infections and the amount of time spent outside, which might just be accounting for this on / off prevention at the moment.

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feisty

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west coast, BC, Canada
Gender: female

Re: Confused
Reply #2 - Sep 4^th, 2014 at 6:28pm

Hi Fox,

It took my husband a full month to become pain free on the Regimen, but I imagine it depends a lot on your D3 levels to start with. We did do an extra 50K dose at the end to nudge things up because we thought it was working but not quite there yet. Keep with it.

Scroll down to see in-home tests:
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

[edited to add - sorry I don't know if they ship to NZ -
in NZ it looks like you can self-request here:
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

]

I think testing is really worth it to figure out what's going on.

Definitely get a prescription for O2! Read the oxygen info yellow link on the left and make sure you get the right kind of mask and regulator. It seems intimidating but I got my husband a prescription and all the equipment in one day! I couldn't stand seeing him in pain any more (he didn't have any meds).

It's great that you're supporting him this way. That's what marriage is about, right?

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« Last Edit: Sep 4^th, 2014 at 6:33pm by feisty »

wife of 48 year old husband who suffers from episodic CH ~ Batch's Anti-Inflammatory Regimen works!

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feisty

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west coast, BC, Canada
Gender: female

Re: Confused
Reply #3 - Sep 4^th, 2014 at 6:29pm

Mike NZ wrote on Sep 4^th, 2014 at 6:27pm:

The D3 test here in NZ does not seem to be funded other than for a few cases where there is significant evidence of someone being deficient. I was told that the reason for this was that too many doctors were requesting it for patients and "the powers that be" decided that the cost did not match the benefits.

Same in my Canadian province Angry

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wife of 48 year old husband who suffers from episodic CH ~ Batch's Anti-Inflammatory Regimen works!

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japanzaman CH.com Veteran Offline I Love CH.com! Posts: 210 Fukuoka, JAPAN Gender:	Re: Confused Reply #4 - Sep 4^th, 2014 at 11:51pm I think we should also consider the possibility that the D3 regimen performs differently when started mid-cycle as opposed to a pure preventative. I'd be curious to see some data on users who began during a cycle and those who began as a pure preventative.
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Batch

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Control The Beast With
O2 & D3 You Must

Posts: 3708
Bremerton, WA
Gender: male

Re: Confused
Reply #5 - Sep 5^th, 2014 at 2:33am

Interesting thread...

Results from the online survey of 127 CH'ers taking the anti-inflammatory regimen indicate no statistically significant differences for episodic CH'ers with respect to when they started this regimen in their cycle.

That said, there is evidence that other comorbid conditions do play a role in the time to respond. For example, the biggest single factor appears to be inflammation from other sources like colds, flu, trauma, surgery, and the big factor, allergic reactions.

There are also comorbid conditions that impact on vitamin D3 metabolism. The examples here are any insufficiency in liver, kidney, thyroid, parathyroid, pancreas, heart/lung and GI tract functions as all play a role in vitamin D3 metabolism.

Steps that have helped CH'ers having a mixed response to the anti-inflammatory regimen with a 25(OH)D serum concentration between 80 and 100 ng/mL include taking additional magnesium, zinc, Omega-3 fish oil and vitamin A (retinol) above that listed in the "how to" for this regimen.

The good news is most of the disturbed CH patterns that occur during the first four weeks after starting this regimen are gone by the 5th to 8th week for episodic and chronic CH'ers.

The bottom line... Don't give up on this regimen... and stay on it year round even if the results were mixed for episodic CH'ers by end of cycle.

Try tuning this regimen by cutting back on calcium and increasing doses of vitamin D3 and the other vitamin D3 cofactors. Increasing the intake of magnesium, zinc and vitamins A (retinol) and K2 can make a difference.

Hope this helps. Take care and please chime in with your observations... Every little bit helps.

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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feisty CH.com Veteran Offline Posts: 205 west coast, BC, Canada Gender:	Re: Confused Reply #6 - Sep 5^th, 2014 at 6:52pm It is really great that Batch makes himself available to help us with "tweaking" the Regimen .
Back to top	wife of 48 year old husband who suffers from episodic CH ~ Batch's Anti-Inflammatory Regimen works! IP Logged

FoxNZ

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Rotorua, NZ
Gender: female

Re: Confused
Reply #7 - Sep 8^th, 2014 at 3:06pm

Wow guys thanks heaps for all this info. Thanks Mike too - I have rung our local laboratory and all we have to do is pop on down there - so I will be dragging my husband there today (he is being attacked a lot now and has reached a real low). I am also chasing up the oxygen thing today. After reading all your responses I have the boost I need - thanks again.

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AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: Confused Reply #8 - Sep 8^th, 2014 at 6:09pm G'day from over the ditch, Fox, and thanks for helping one of our mates. It means a lot to us.
Back to top	My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com IP Logged

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CHRD

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NYC

Re: Confused
Reply #9 - Sep 18^th, 2014 at 7:34pm

Not sure if my post is too late - but you really need to get O2 to abort the attacks and stick with the vitamins so they have a chance to kick in. When you do get the O2, also order the special mask that is offered here on this site as the one you will most likely receive elsewhere will not be sufficient. My husband's headaches almost seemed to get worse for a the first week when he was in the heaviest loading stage. It was as if the headaches were fighting the vitamins to stay in his body. But the D3 appears to be winning the fight - and if he has even the smallest hint of a headache coming, he is able to abort it with oxygen. Now (fingers and toes all crossed), even the hint of a headache seems to be disappearing. He is 95% PF - where he was having multiple excruciating episodes each day just a couple of weeks ago. Oxygen is a must - as are the vitamins. Good luck!!

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