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Carl D

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Re: 123 Days PF And I Think I know Why
Reply #1300 - Feb 27^th, 2013 at 8:47am

I've been doing the Vitamin D3 regimen as part of my R.A. treatments, and while we had the meet n greet last month in St Louis, I was talking with Guiseppi about it, and he swears by its efficiency with CH.
After talking with him, I came back and read the exact doses for the CH treatment. Unfortunately, it was only a couple of weeks later that I went back into cycle.

While it didn't stop the cycle or prevent it from coming on - this one hasn't been brutal. Ok, I've had some pretty brutal days, but am skipping 2-3 days at a time without an attack, and then might get hit 2-4 times in a day, or just once. It has been really weird, as scents were a HUGE trigger late last year while in my last cycle. I couldn't even go to the Dr's office without going into an attack.

I know we're all wired differently, and so things affect us differently. I just have to wait to go back and get my D3 levels tested before I can make a jump past 50'000 iu's a day. I am convinced though, that this has made the cycle "low" for me, as I would normally be getting hit 2-12 times a day, everyday.

Thanks again Batch for all of your research on this.
Carl D

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djphrenzy

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Re: 123 Days PF And I Think I know Why
Reply #1301 - Feb 27^th, 2013 at 11:11am

Carl D wrote on Feb 27^th, 2013 at 8:47am:

I've been doing the Vitamin D3 regimen as part of my R.A. treatments, and while we had the meet n greet last month in St Louis, I was talking with Guiseppi about it, and he swears by its efficiency with CH.
After talking with him, I came back and read the exact doses for the CH treatment. Unfortunately, it was only a couple of weeks later that I went back into cycle.

While it didn't stop the cycle or prevent it from coming on - this one hasn't been brutal. Ok, I've had some pretty brutal days, but am skipping 2-3 days at a time without an attack, and then might get hit 2-4 times in a day, or just once. It has been really weird, as scents were a HUGE trigger late last year while in my last cycle. I couldn't even go to the Dr's office without going into an attack.

I know we're all wired differently, and so things affect us differently. I just have to wait to go back and get my D3 levels tested before I can make a jump past 50'000 iu's a day. I am convinced though, that this has made the cycle "low" for me, as I would normally be getting hit 2-12 times a day, everyday.

Thanks again Batch for all of your research on this.
Carl D

If you're cycle appears disrupted, but clearly not eliminated, I'd bet your 25(OH)D is somewhere around 35-50 ng/mL.

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« Last Edit: Feb 27^th, 2013 at 11:11am by djphrenzy »

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1302 - Feb 27^th, 2013 at 7:51pm

Hey Carl,

Thanks for the post. I agree with DJP, your 25(OH)D serum concentration is likely too low to provide a complete therapeutic response that prevents your CH.

Please don't get me wrong. You do need to see your PCP and get your 25(OH)D tested... That said, there's no real reason not to be taking at least 15,000 IU/day vitamin D3... or even adding a 50,000 IU loading dose of vitamin D3 once a week.

After all, your skin can generate 15,000 IU of vitamin D3 in as little as 15 to 20 minutes if... you go out in the mid day summer sun clad in a bathing suit with no sun block...

You probably don't do that and neither do I any more... The skin cancer mafia has us all spooked...

Some other things to try that may improve your response to the anti-inflammatory regimen is take more magnesium...

Just make sure it's magnesium citrate, magnesium lactate or magnesium glycinate. These forms of magnesium have 80-90% bioavailability... magnesium oxide bioavailability is down around 4%.

Too much magnesium oxide also acts as a laxative... Shocked

Take care,

V/R, Batch

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« Last Edit: Feb 27^th, 2013 at 8:42pm by Batch »

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chrisw

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Re: 123 Days PF And I Think I know Why
Reply #1303 - Feb 28^th, 2013 at 10:42pm

hi everyone, all of this info on the benefits of D3 is fascinating. Not just for ch, but for so many problems and conditions. I would love to get my husband to follow a D3 regimin, just for heart health, cancer prevention etc. He hates pills and medicines in general, he sees my box of bottles and all of the meds and supplements I have been taking lately and his eyes bug out. Anyway, was wondering, what is the combo you need to take for a general dosage of D3 to get your levels up? Should he take just 10000 D3, and a calcium citrate? Or a multivitamin? Im just not sure. I need to do this with the least amount of pills as possible. anyone know? Thanks.

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1304 - Mar 1^st, 2013 at 3:16am

Chris,

Good on you for recognizing all the other health benefits that come from taking the anti-inflammatory regimen... over and above preventing your cluster headaches... and that your husband needs to be on this regimen as well.

I'd like to hear that more CH'ers are introducing this regimen to the rest of their families... It makes so much good sense...

The basic anti-inflammatory regimen with 10,000 IU/day vitamin D3 is good for teens and adults... You can cut it in half for the younger members of the family. Talk with your family PCP about it.

I understand your husband's push-back on the number of pills... My wife wasn't all that keen on taking what she called a "handful of horse pills" either.

That said, wives can be very pursuasive when they want something... I'm not a behavioral psychologist, however, I learned at an early age that a reward system is far more effective in modifying behaviors than brow beating or brute force... Think about it for a few seconds and I'm confident you'll come up a system of well timed rewards...

So here's a suggestion... The following photo illustrates the basic regimen that took me pain free and has kept me that way for over two years.

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

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Your husband needs to take two of each for starters...

The not so subtle visual here is taking something good together... The two ramekins containing the daily regimen sit side by side next to the kitchen phone and you can't walk into our kitchen without seeing them...

It took two days with a second ramekin filled with "bait" next to mine, which was always empty, for Joyce to take the hint...

She already knew this regimen was preventing the cluster headaches that had haunted me for 15 years... She also noticed that I had more energy and had lost nearly 10 lbs after taking this regimen for a month or so...

The final clincher was a sotto voce comment, "this regimen also prevents migraines..." and it did... Joyce hasn't had a migraine since starting this regimen two years ago... Prior to that, she'd been a 20 year chronic migraineur with 3 to 5 day long migraine headaches hitting like clockwork each month.

So there you have it... It's not a one pill solution that fits all... At some point you can start discussing the benefits of vitamin K2 menaquinone-7 (MK-7) that directs serum calcium away from arteries and into the bones...

There's also multivitamins like Centrum Silver or Safeway's Century Senior 50+ formula, both of which contain vitamin A (retinol) that's essential for the autocrine/paracrine path of vitamin D3 metabolism at the cellular level. This is the vitamin D3 metabolic path that builds the immune system and enables the genetic expression that works all the magic preventing so many disorders...

There's only one word of caution... Fertility tends to go up when couples go on this regimen together... Smiley

Take care and please keep us posted,

V/R, Batch

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chrisw

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Re: 123 Days PF And I Think I know Why
Reply #1305 - Mar 1^st, 2013 at 8:23am

thanks Batch, you really are the greatest. Ive got to get the number down for him or hes just not going to take them. Well, the good thing is, he is a roofer who is out in the sunshine pretty much all year, but of course in the winter he is all covered up. Hopefully just some D3 and calcium citrate will help to get his levels up somewhat . Ive been on your combo for about a wk and a half now, I dont think I am seeing any results, because I was having the wk from hell and I upped my verap dose and nighttime hits got better, but I dont expect that to last, unless the D3 combo helps by then.
I havent had my levels checked, I just havent been able to afford an extra doctors visit. I will go next month, and tell her to check them, between the original doctors visit, O2, meds, and vits, Im broke. BTW, I have been having severe stress due to financial probs this past yr, then I got the flu in early Jan, followed by a sinus infection. Immediately afterward BAM!!!! CH kicked in after 2 and half yrs pain free!! I think this makes sense since stress and illness can lower your D3, Its very interesting!!!!!!
Huh

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enli

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Re: 123 Days PF And I Think I know Why
Reply #1306 - Mar 1^st, 2013 at 8:49am

Just an update, started getting 1-2 day time CH's in addition to 1-2 night time CH's. Fell off the wagon, went with a 4 week round of Prednisone for a little relief. Last two days sure have been nice, but know that once I get to 1-2 pills a day on taper they will start sneaking back. Maybe the weather will be warm enough by then to start back fishing and getting more outdoors!

Checked around for D lab testing and found one lab that would give a 20% discount to none insurers, but cost was still about $90/test and only if Doc would request the test and if I have to see him that's another $90-100. Soooo, checked out sites with the mail in cardboard blood sample and they are around $60. One site offer to check for $40 and when I filled out application turned out they were only offering it to female migraine suffers. Ha! Guess I could have lied and filled it out with my wife's name and sent in my blood. Hmmm?

Still have faith, just needed a little escape from the pain.

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Brew

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Re: 123 Days PF And I Think I know Why
Reply #1307 - Mar 1^st, 2013 at 10:02am

Quote:

One site offer to check for $40 and when I filled out application turned out they were only offering it to female migraine suffers. Ha! Guess I could have lied and filled it out with my wife's name and sent in my blood. Hmmm?

One quick test would show them that the blood supplied was from a male. Hmmm...

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1308 - Mar 1^st, 2013 at 2:00pm

Enli,

Understand the need to have a break... Regarding 25(OH)D lab testing, have you checked out ZRT Labs at the Vitamin D Council web site?

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

or

$65 and no Rx required...

No charge with an Rx... See below:

ZRT Laboratory will courtesy bill the following insurance companies as an out-of-network provider:

Original Medicare Part B
Medicare Advantage Plans
TRICARE
Cigna Healthcare
Humana
Medical Mutual

What information do I need to submit to ZRT along with my sample in order to bill my insurance?

You will need to send the following along with your sample:

Legibly signed laboratory order with applicable diagnosis code(s)

Date of birth

Physician’s full printed name, address, and NPI number

Legible front & back copy of primary insurance card

Signed & dated ZRT Insurance Authorization Form (included in kit)

It's all done through the mail...

They'll send you the home blood spot test kit and return mailer.

While you're doing all that... In as much as you've been on an accelerated vitamin D3 dosing schedule 4+ weeks without a therapeutic response... Getting your 25(OH)D tested is a MUST... "Tuning" this regimen is also in order...

Some suggestions include:

Cut the calcium intake

Bump the magnesium intake to 1000 mg/day... Just make sure you take magnesium citrate, magnesium lactate, or magnesium glycinate... These magnesium salts have a bioavailability around 80-90%... Magnesium oxide bioavailability is down less than 10% and it acts as a laxative at doses like this.

Take care and keep us posted,

V/R, Batch

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« Last Edit: Mar 1^st, 2013 at 2:04pm by Batch »

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cyclist7531

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Re: 123 Days PF And I Think I know Why
Reply #1309 - Mar 7^th, 2013 at 9:32am

After doing 20k of vit. D3 along with the fish oil and calcium after 1 month my D3-25 level is at 52 up from 29 and my calcium is at 9.1 which is down from 9.8

I've missed a few days here and there and have found taking the combination of D3, Fish Oil and Calcium really hard on my stomach. I've tried to at least take the D3 daily, but have been a bit sporadic with the Fish Oil and Calcium. I'm going to give it another go and try taking all 3 again on a regular basis. Is it ok to split it up during the day rather than all at once after dinner? Say, take the FO or Calcium in the morning with breakfast and then the D3 at dinner?

Also, should I increase my D3 by adding a 50k loading one a week?

Since I've started the treatment at the beginning of Feb I've had about 10 days where I've experienced a headache that required some treatment such as Imitrex pill or NS, however I would say the intensity has not been as severe. I just got a 25 lpm regulator for my O2 as using O2 at 15max didn't appear to have any impact. I'll try the 25 one when I get my next headache.

Any other advise would be appreciated.
Thanks, Mark

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9thNerve

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Re: 123 Days PF And I Think I know Why. UPDATE
Reply #1310 - Mar 7^th, 2013 at 7:01pm

Update on Regimen.
I have been doing the 1.2.3. since mid Jan.
I have had my D3 levels checked regularly.
Initial (having been on 10,000iu daily for several months prior to initiateing the protocol) was 64ng/nl.
2nd testing a month later was 110ng/nl (this was with the 50,000iu weekly bump and 15,000iu daily). Dropped down to 15,000 for 4-5 days, then 10,000iu for a week; re-tested because I needed labs done. Still up there at 103ng/nl. Goal is 80-90.
My head is a complicated problem :
-Glossopharyngeal neuralgia beginning 3 years ago resulting in subsequent constant daily "migraines" (r/o hemicraniumcontiuum/cluster/etc,etc)
-had microvascular nerve decompression of trashed 9th nerve in Sept 2011. Cont to have horrific headaches almost daily.
Have tried MANY meds.
Met with Batch to try O2 and hyperventilating. This led to no relief of headaches and increased pain.
Now continuing with the D3 regimen.
No change in frequency of symptoms/frequency of headaches despite long term persistant elevated D3 levels.
Here's where it gets a twist.
SO Batch suggested I was acidotic, needed to neutralize my blood for better absorption.
Despite doing the baking soda, alka seltzer, lemonade four times a day, my most recent labwork indicated I am metabolically acidotic.
But here's the deal : the 2 meds I am on for the nerve pain to try to manage THAT awful pain cause ACIDOSIS. So, I am trying to eat the neutralizing diet and lemonade. We will see what happens next blood check. But the meds some of you are on could be impacting the efficacy of the D3 regimen.

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Globi

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Re: 123 Days PF And I Think I know Why
Reply #1311 - Mar 7^th, 2013 at 7:15pm

Batch wrote on Mar 1^st, 2013 at 2:00pm:

Enli,

Understand the need to have a break... Regarding 25(OH)D lab testing, have you checked out ZRT Labs at the Vitamin D Council web site?

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

or

$65 and no Rx required...

No charge with an Rx... See below:

ZRT Laboratory will courtesy bill the following insurance companies as an out-of-network provider:

Original Medicare Part B
Medicare Advantage Plans
TRICARE
Cigna Healthcare
Humana
Medical Mutual

What information do I need to submit to ZRT along with my sample in order to bill my insurance?

You will need to send the following along with your sample:

Legibly signed laboratory order with applicable diagnosis code(s)

Date of birth

Physician’s full printed name, address, and NPI number

Legible front & back copy of primary insurance card

Signed & dated ZRT Insurance Authorization Form (included in kit)

It's all done through the mail...

They'll send you the home blood spot test kit and return mailer.

While you're doing all that... In as much as you've been on an accelerated vitamin D3 dosing schedule 4+ weeks without a therapeutic response... Getting your 25(OH)D tested is a MUST... "Tuning" this regimen is also in order...

Some suggestions include:

Cut the calcium intake

Bump the magnesium intake to 1000 mg/day... Just make sure you take magnesium citrate, magnesium lactate, or magnesium glycinate... These magnesium salts have a bioavailability around 80-90%... Magnesium oxide bioavailability is down less than 10% and it acts as a laxative at doses like this.

Take care and keep us posted,

V/R, Batch

With all respect. Post smaller.

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: 123 Days PF And I Think I know Why Reply #1312 - Mar 7^th, 2013 at 8:26pm Globi wrote on Mar 7^th, 2013 at 7:15pm: With all respect. Post smaller. With all respect, " <ctl> - " if it looks too big to you.
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Globi CH.com Junior Offline I love YaBB 1G - SP1! Posts: 96 Amsterdam, The Netherlands Gender:	Re: 123 Days PF And I Think I know Why Reply #1313 - Mar 7^th, 2013 at 8:37pm Brew wrote on Mar 7^th, 2013 at 8:26pm: Globi wrote on Mar 7^th, 2013 at 7:15pm: With all respect. Post smaller. With all respect, " <ctl> - " if it looks too big to you. Almost all about this subject seems very large.....
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jenga

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Re: 123 Days PF And I Think I know Why
Reply #1314 - Mar 7^th, 2013 at 9:43pm

Hi Batch,

I am 31 years old male and episodic for 12 years. my next cycle will come in october this year. I am planning to try this regimen as you suggested;
--------------------------------------------------------
Omega 3 Fish Oil - 2000 to 2400 mg/day (EPA 360
                        mg/day, DHA 240 mg/day)
Vitamin D3 *       - 10,000 IU/day
Calcium **          - 500 mg/day (calcium citrate preferred)
Magnesium          - 400 mg/day (magnesium citrate
                                 or magnesium gluconate)
Vitamin K2 ***    - 120 mcg/day
Vitamin A ****    - 900 mcg (3,000 IU) for men and
                        - 700 mcg (2,333 IU) for women
Zinc                   - 10 mg/day
Boron                - 1 mg/day
---------------------------------------------------------
and before starting I will have 25(OH)D test done.

here is the question;
What is the right time to start this regimen?
just now or some time before the cycle or at the beginning of the cycle or what?

and any further suggestions would be appreciated...

thanks a lot for everything,
jenga

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: 123 Days PF And I Think I know Why Reply #1315 - Mar 7^th, 2013 at 11:43pm Globi wrote on Mar 7^th, 2013 at 8:37pm: Almost all about this subject seems very large..... Larger than life itself, it seems. Do the regimen or don't. I don't really care one way or the other. But don't you dare try to undermine something you know very little about.
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Globi

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Re: 123 Days PF And I Think I know Why
Reply #1316 - Mar 8^th, 2013 at 5:09am

Brew wrote on Mar 7^th, 2013 at 11:43pm:

Globi wrote on Mar 7^th, 2013 at 8:37pm:

Almost all about this subject seems very large.....

Larger than life itself, it seems.

Do the regimen or don't. I don't really care one way or the other. But don't you dare try to undermine something you know very little about.

I don't undermine anything. It's just irritating to see the same story in EVERY topic in BIG letters.

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: 123 Days PF And I Think I know Why Reply #1317 - Mar 8^th, 2013 at 7:56am So start your own forum and make your own rules. Sheesh.
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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1318 - Mar 8^th, 2013 at 10:49am

Hey Jenga,

Good question... For some reason, and we don't know how or why, vitamin D3 has a tendency to mess up the cluster headache biological clock and calendar.

Accordingly, I'd say start this regimen as soon as you get your lab test for 25(OH)D... and I would try to get this lab test as soon as possible.

It turns out 10,000 IU/day vitamin D3 is a good maintenance dose to prevent cluster headache. The average 25(OH)D response to a vitamin D3 dose of 10,000 IU/day is ~85 ng/mL but it can take upwards of three months to reach this serum concentration.

After two years of studying the health benefits of vitamin D3 therapy at the doses we take to prevent cluster headache, I've come to the conclusion my wife and I would be taking it even if I didn't have cluster headache and my wife wasn't a migraineur.

In other words, once you realize the potential health benefits made possible by taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3, the rationale for staying on this regimen is a no-brainer...

For starters, the incidence of colds, flu and other viral infections drops significantly as this regimen turbocharges our immune system's T Cells.

For a complete list of health benefits gained by having a regular regimen of vitamin D3 as well as the increased risks associated with a vitamin D3 deficiency, see the following link:

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

or

It's an eye-opener...

The bottom line is simple as I see it... If you start this regimen now, the odds of sailing through your next regularly scheduled CH cycle pain free are very high...

I hope this helps... and please keep us posted.

V/R, Batch

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cyclist7531

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Re: 123 Days PF And I Think I know Why
Reply #1319 - Mar 8^th, 2013 at 11:04am

Being that my post was before the post by globi I'm posting again.

Re: 123 Days PF And I Think I know Why
Reply #1309 - Yesterday at 9:32am After doing 20k of vit. D3 along with the fish oil and calcium after 1 month my D3-25 level is at 52 up from 29 and my calcium is at 9.1 which is down from 9.8

I've missed a few days here and there and have found taking the combination of D3, Fish Oil and Calcium really hard on my stomach. I've tried to at least take the D3 daily, but have been a bit sporadic with the Fish Oil and Calcium. I'm going to give it another go and try taking all 3 again on a regular basis. Is it ok to split it up during the day rather than all at once after dinner? Say, take the FO or Calcium in the morning with breakfast and then the D3 at dinner?

Also, should I increase my D3 by adding a 50k loading one a week?

Since I've started the treatment at the beginning of Feb I've had about 10 days where I've experienced a headache that required some treatment such as Imitrex pill or NS, however I would say the intensity has not been as severe. I just got a 25 lpm regulator for my O2 as using O2 at 15max didn't appear to have any impact. I'll try the 25 one when I get my next headache.

Any other advise would be appreciated.
Thanks, Mark

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1320 - Mar 8^th, 2013 at 12:56pm

Hey Mark,

Thanks for the update and your lab results for 25(OH)D. Your increase in serum 25(OH)D concentration is good, but at 52 ng/mL, it's still below the therapeutic response range of 60 to 110 ng/mL, or "green zone" where nearly all CH'ers have experienced a favorable response to this regimen. Adding a 50,000 IU loading dose once a week should help in elevating your 25(OH)D into the green zone.

As far as when to take this regimen or splitting it up... do what works best for you. Taking the vitamin D with the largest meal of the day is the only rule that makes sense... You can split or take the other supplements in this regimen at any time.

If you think it's the fish oil, the calcium or a combination of the two that are causing the upset tummy... skip one or the other for a few days to see which is the real culprit... Once you determine which of these two supplements is causing the problems, split the dose over two meals.

Hope this helps. Please keep us posted.

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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cyclist7531 CH.com Newbie Offline I Love CH.com! Posts: 19	Re: 123 Days PF And I Think I know Why Reply #1321 - Mar 8^th, 2013 at 5:40pm Batch, appreciate the advice. I'll try the loading dose 1x/week and then request a retest in 1 month. I'll play with the fish oil and calcium, but will continue to take the D3 at dinner which hasn't given me any stomach issues. Mark
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Globi CH.com Junior Offline I love YaBB 1G - SP1! Posts: 96 Amsterdam, The Netherlands Gender:	Re: 123 Days PF And I Think I know Why Reply #1322 - Mar 8^th, 2013 at 6:18pm Brew wrote on Mar 8^th, 2013 at 7:56am: So start your own forum and make your own rules. Sheesh. So normal comments are not possible here?
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Globi CH.com Junior Offline I love YaBB 1G - SP1! Posts: 96 Amsterdam, The Netherlands Gender:	Re: 123 Days PF And I Think I know Why Reply #1323 - Mar 8^th, 2013 at 6:34pm @ Batch You post big because you are vision impaired? I was told.... Then i am sorry to commend on that. I did not know.
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: 123 Days PF And I Think I know Why Reply #1324 - Mar 8^th, 2013 at 7:51pm Globi wrote on Mar 8^th, 2013 at 6:18pm: So normal comments are not possible here? Normal comments are welcome here. The size of the typeface has no bearing on normality.
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