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123 Days PF And I Think I know Why (Read 466242 times)
Don B
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Re: 123 Days PF And I Think I know Why
Reply #2075 - Nov 22nd, 2014 at 5:56pm
 
perfectly understandable Wayne. Glad you are pain free  Smiley
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Mike NZ
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Re: 123 Days PF And I Think I know Why
Reply #2076 - Nov 22nd, 2014 at 8:08pm
 
Wayne wrote on Nov 22nd, 2014 at 5:25pm:
I'm still taking verapamil along with the D3 and will certainly stay on both until I am at least sure that my D3 is at therapeutic levels, then probably start titrating off the verapamil. I can see that that will be a tough decision though, I'm enjoying this pf time and don't want to rock the boat.


Take that step at your own speed and slowly, taking notice of any changes as you titrate down. It isn't a race to get to zero verapamil. Hoping you can do this and still remain CH pain free too.
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Wayne
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Re: 123 Days PF And I Think I know Why
Reply #2077 - Nov 23rd, 2014 at 4:41pm
 
Mike NZ wrote on Nov 22nd, 2014 at 8:08pm:
Take that step at your own speed and slowly, taking notice of any changes as you titrate down. It isn't a race to get to zero verapamil. Hoping you can do this and still remain CH pain free too.


Wise words, Thanks Mike, how long did it take you to step off?
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Mike NZ
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Re: 123 Days PF And I Think I know Why
Reply #2078 - Nov 23rd, 2014 at 6:29pm
 
Wayne wrote on Nov 23rd, 2014 at 4:41pm:
Mike NZ wrote on Nov 22nd, 2014 at 8:08pm:
Take that step at your own speed and slowly, taking notice of any changes as you titrate down. It isn't a race to get to zero verapamil. Hoping you can do this and still remain CH pain free too.


Wise words, Thanks Mike, how long did it take you to step off?


I waited 4 weeks from my last CH, then dropped the verapamil dose by 120mg once a week until I got to zero after another 4 weeks. All the time I was watching for any CH like symptoms but didn't see any.
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tangerinearmy
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Re: 123 Days PF And I Think I know Why
Reply #2079 - Dec 9th, 2014 at 4:39pm
 
hi all,
im going to start this regime for sure but i have a quickie question for any uk sufferers on this regime.

where are you finding the best quality products at the right prices.

also i presume its still ok to take maintenance doses of MM Wink
my only concern about doing this is that i need the test which means going to a GP (i presume)and i havnt been able to find a half decent gp that helps without one hell of a fight.
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2080 - Dec 9th, 2014 at 5:38pm
 
Hey Tangerinearmy... 

Good move starting the anti-inflammatory regimen...  The odds are high you won't be sorry... I've sent you a PM that should answer some of your questions including how/where to source the needed supplements.

Try to see your PCP for the 25(OH)D lab test...  If he or she craters on you and refuses to write you a script for this lab test, there are local labs all around the UK that will do the 25(OH)D lab test without an Rx...  You'll just need to foot the bill.  Google it... 

In over four years of use by over 600 CH'ers here at CH.com and Clusterbusters, there haven't been any problems reported taking this regimen along with neurologist prescribed CH meds... or MM.

All you need to do is ask if you have questions...

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Dec 9th, 2014 at 5:43pm by Batch »  

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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tangerinearmy
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Re: 123 Days PF And I Think I know Why
Reply #2081 - Dec 10th, 2014 at 5:21am
 
batch

nice one mate and thanks very much.
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maz
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Re: 123 Days PF And I Think I know Why
Reply #2082 - Dec 10th, 2014 at 7:38am
 
I get mine from iherb.com in california. They supply the large doses we need at very reasonable prices and very fast shipping. Even with the shipping cost here to the UK it's still way cheaper than I have found anywhere else.
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tangerinearmy
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Re: 123 Days PF And I Think I know Why
Reply #2083 - Dec 11th, 2014 at 7:57am
 
cheers maz



another question cos im not the brightest bulb on the tree and its starting to hurt my head.
which of the ingredients areyou buying individually and which come in a multi vit
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maz
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Re: 123 Days PF And I Think I know Why
Reply #2084 - Dec 11th, 2014 at 8:07am
 
I buy all mine individually as it seems the easiest way to get the doses right.  Some of the items contain a small amount of some of the other ingredients in the regime but I factor it all in and get as close as poss to Batch's recommendations. It took a long tome to work it all out for my first order, but after that just repeat the order. If I remember rightly It was impossible to get the quantities EXACT, but I got very close, and I think close enough is good enough.
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Magnus
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Re: 123 Days PF And I Think I know Why
Reply #2085 - Dec 11th, 2014 at 3:40pm
 
Hi everybody

Wanted to update.

I have been painfree for more than two years with Batch Vitamin D Regimen, exept for a month of CH early spring this year. I didnt take care of me when that happened and know now what i need to do.
I have a completely new life. A future not expecting the worst all the time.
Ive been HC episodical for 30, something years. This has never happened before.... EVER!!!!

My coctail today consist of:

2000 mg Omega 3
5000 vitamin D (i built it up first with a few huge dozes of 50.000 twice a week)
100 CUQ10
K2 50m (only sometimes)
Zink 30mg
Spectro Multi Vitamin
B12 1000mc
Vitamin A sometimes.. 200mg
I only take Calcium (200mg) and Magnesium (90mg) through Spectro vitamin.
Sometimes i have a magnesium drink at night but to much Calcium was bad for me. Couldnt do numer 3 so easely.. Aw! Smiley

As i said in the beginning i have a new life. I dont think about the Beast anymore
Thank you so much Batch for all your help and i hope you who are still suffering, that u will find peace soon. This definently works (in theory) but every individual have to work around the basics. Its not the neouros.. Its the hormones!

Greeding from my icy Iceland Shocked

Magnús
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2086 - Dec 11th, 2014 at 5:15pm
 
Hey Magnús,

Thanks for the wonderful update on your experience with the anti-inflammatory regimen... 

I suspect the spring CH burn through was due to an insufficient dose of vitamin D3 and resulting drop in your 25(OH)D serum concentration...  10,000 IU/day vitamin D3 and at times higher doses are needed during times of immune system stress.

Our immune systems take priority on the consumption of 25(OH)D...  When that happens, there may be insufficient levels of vitamin D3 metabolites and the enzymes needed to produce them to prevent CH. 

The Spring pollen season in late April through May here in the Pacific Northwest has alder and maple pollen blowing around thick enough to coat my pickup truck making it look like someone dumped a bag of Portland Cement all over it... 

When that happens, I need to ramp up my vitamin D3 intake to 20,000 IU/day in order to stay pain free...

During the Fall, the first rains trigger leaf mold on both the alder and maple trees and that requires higher doses of vitamin D3 to remain pain free as well.

We're finding just about anything that triggers an immune system response will require additional vitamin D3 to remain pain free.

Thanks again for the wonderful feedback.

Take care,

V/R, Batch
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« Last Edit: Dec 11th, 2014 at 5:25pm by Batch »  

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Hoppy
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Re: 123 Days PF And I Think I know Why
Reply #2087 - Dec 11th, 2014 at 5:30pm
 
Maz wrote, close enough is good enough.
That's very Aussie Maz  Smiley

I source all my vitamins from Biovea for the
correct dosage, except for calcium which also
gave me problems doing #2 I now get my calcium
intake 220mg from Kirkland Mature Multi, and all
is fine in that department  Smiley

Hoppy
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maz
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Re: 123 Days PF And I Think I know Why
Reply #2088 - Dec 11th, 2014 at 6:41pm
 
Hi Hoppy, must have picked it up while I was there. Grin

The trouble is I have not been able to find any where in England, or at least in my area, that sells the high doses.
All you can get at the pharmacies is 200 iu of D3 which was an average of £6.99 for 30.
At the doses we need, thats over 30 pills and 7 quid a day and still not the recommended dose. And thats just the D3. Add up the same again for all the other co factors to the regime and you'd have to be a millionaire, and swallow hundreds of pills. I don't think my stomach could stand it, let alone my purse.

I can't remember the exact prices, but I got 100 x 5,000iu of D3, and the correct doses of calcium and magnesium, plus shipping, from iherb for under £25. It lasts ages.

If any one can tell me of a pharmacy/shop/supplier here in England that can do it for that price, I'd love to know.
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« Last Edit: Dec 11th, 2014 at 6:43pm by maz »  
 
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thierry
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Re: 123 Days PF And I Think I know Why
Reply #2089 - Dec 11th, 2014 at 11:07pm
 
Hi Maz, Tangerinearmy,
I'm on the isle down the road from you, ie: Ireland, it can be quite difficult to source some of the items on Batch's D3 regimen here and the prices are extortionate so i get everything sent over from iherb.com, postage is cheap too when keeping the orders under 4 pounds weight. If i need to order more than the 4lbs, I just do 2 orders. Also this postage option has so far never been intercepted by customs which would otherwise slap on some import taxes. For my 1st order with iherb, i didn't choose this postage option and customs got me, had to pay a pretty penny to the f@%&*#s.  The package nearly always arrives within 10 to 12 days of ordering.

Here is a list of what I get from iherb, :

This D3 is at 10000iu per softgel so 1 a day (cheap in this large tub)

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- magnesium citrate, 2/day = 400mg

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- calcium citrate, 2/day = 500mg

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- fish oil omega 3,(same as Batch recommends), 2/day = 2400mg

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- Vit A + zinc i get from this multivitamin which also has lots of other good stuff, 1/day

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- vit K2, the one Batch recomends, 1/day

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That's it, all this does the trick for me and is a lot cheaper than in my local healthfood store.
All the best  Smiley
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« Last Edit: Dec 11th, 2014 at 11:15pm by thierry »  
 
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tangerinearmy
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Re: 123 Days PF And I Think I know Why
Reply #2090 - Dec 12th, 2014 at 5:47am
 
thanks thierry
thats just what i needed much appreciated.
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Re: 123 Days PF And I Think I know Why
Reply #2091 - Dec 22nd, 2014 at 12:04pm
 
Just chiming in to say I've been Pain Free for a whole week now after a few weeks on Batch's regimen. No arguing with results. I was in the middle of a nasty cycle, and now I sleep like a baby. "Thank You" just doesn't cover it. I'm off to donate now. PFD to you all and Merry Christmas!
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2092 - Dec 23rd, 2014 at 4:08pm
 
Hey Brian,

Great feedback... Thank you for sharing it with us...

It's a wonderful feeling knowing you finally have control over the beast... and you're pain free.

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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Re: 123 Days PF And I Think I know Why
Reply #2093 - Dec 24th, 2014 at 12:42pm
 
Wishing all and everyone a happy, joyful, peaceful and PF Christmas.
May you be well. Smiley
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2094 - Dec 24th, 2014 at 3:56pm
 
Great Idea Thierry...  You beat me to the punch.

Wishing all CH'ers and supporters a Very Merry and pain free Christmas, Happy Hanukkah, Happy Holidays and a Happy New Year!

V/R, Batch (Pete & Joyce Batcheller)
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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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Re: 123 Days PF And I Think I know Why
Reply #2095 - Dec 31st, 2014 at 1:32pm
 
Hello everybody!! I haven't been here in a while due to me having my life back thanks to D3. I have been PF since Feb. But I have never forgotten how I got here. I wanted to wish Batch and everyone here who helped me fight the beast from day one a Happy New Year full of pain-free days. Live you all!

-Andy
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2096 - Dec 31st, 2014 at 7:40pm
 
Hey Andy,

Thanks for the wonderful New Year's Eve update...  Have a Happy and Healthy New Year.

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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Re: 123 Days PF And I Think I know Why
Reply #2097 - Jan 12th, 2015 at 7:37pm
 
Hey Batch, well as you know I tried the regimen and was virtually pain free for almost 2 years, but the demon reared its ugly head last week with vengeance and I have no idea why.  I had continued the regimen.  The only thing I know is the weather which always in the past triggered a cycle.  Fortunately so far I have only had a few 7-9 kip hits, but my hits are very frequent at night.  Fortunately I can abort with O2, but still shocked.  Ernie/aka Wishbone
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2098 - Jan 13th, 2015 at 1:45am
 
Hey Ernie,

Thanks for the update.  You're not alone.  Roughly 10% of CH'ers on this regimen experience an outbreak of CH after two years or so... 

Fortunately, I think we've a handle on this phenomenon...  Bump your daily intake of vitamin D3 to twice what you've been taking as a maintenance dose or 20,000 IU/day for a week or two.  Add a single 50,000 IU loading dose of vitamin D3. 

You'll also need to increase your magnesium intake up to 600 mg/day or 750 mg/day.  After a couple weeks, try to taper back down to 10,000 IU/day and a serum concentration around 80 ng/mL.

Doing this should buy you some relief, but try to see your PCP for a lab test of your serum 25(OH)D, total calcium, PTH, magnesium and vitamin B12.

While you're doing this pick up some vitamin B 50 and take a tablet a day for three months.  If you can't find any vitamin B 50, get the vitamin B 100s and take one every other day for three months.  The vitamin B 50 tablets are formulated with 50 mg of each B vitamin plus 400 mg of folic acid.  Try to avoid the B complex or Super B complex as they are light on some of the B vitamins.

It pays to be connected...  I got in touch with Dr. Stasha Gominak, MD and shared the data I've been collecting on the anti-inflammatory regimen preventing CH and migraine headahes.  She's a neurologist prac­tic­ing in Tyler, Texas who has been prescribing a vitamin D3 regimen very similar to the anti-inflammatory regimen for her patients suffering from sleep, chronic pain and headache disorders.  The difference is she tests for vitamin B12 and adds a 3-month course of vitamin B 50.

She's been using this regimen a lot longer than the anti-inflammatory regimen and had quite a few of her patients report a loss of effectiveness after a couple years of pain free existence... It took her a while, but when a couple of her patients reported the regimen was working again after taking some B vitamins, she did the clinical research and came up with the 3-month course of vitamin B 50 as a solution. 

We don't know why, but maintaining a 25(OH)D serum concentration up around 80 ng/mL causes us to burn down one or more of the B vitamins causing a deficiency.  When that happens, the wheels fall off and the headaches return.

The 3-month course of vitamin B 50 takes care of any B vitamin deficiencies.  I've also modified the anti-inflammatory regimen by dropping the Kirkland brand calcium citrate and adding the Kirkland brand Mature Multi. 

The Mature Multi has less calcium, more vitamin A (retinol) and all the B vitamins at RDA.  It doesn't have enough magnesium so I also suggest the Kirkland brand of magnesium citrate 250 mg liquid softgels...  Two to three of these (500 to 750 mg of magnesium) helps prevent any calcium-magnesium imbalance.

Dr. Gominak has a great website with videos well worth the time watching.  You can find it at the following link:

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Dr. Gominak comes at the treatment of sleep, chronic pain and headache disorders from a slightly different perspective...  As you'll see in her videos, 8 hours a day of "quality" sleep is very important.  She's also a big fan of maintaining beneficial colonies of GI tract bacteria.  The vitamin B 50 helps in this area but a healthy diet of whole foods with lots of green veggies is also important.

Take care and please keep me 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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TheAndyT
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Re: 123 Days PF And I Think I know Why
Reply #2099 - Jan 13th, 2015 at 8:25am
 
Batch, ia the vitamin B-50a one shot deal or should it be repeated again after some timw to bring levels back up? Thanks and have a wonderful day.

-Andy
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