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Episodic: how long to stay on D3? (Read 4795 times)
jmc1106
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Episodic: how long to stay on D3?
May 10th, 2017 at 3:14pm
 
It's been 3.5 years since my husband's last clusters. We are both cautiously optimistic about trying the D3 regimen. Got his blood drawn yesterday, took the first dose last night including 10K of the D3 and all the other goodies...no midnight or morning cluster, and he hasn't even gotten to that loading dose yet! He did have a headache, but that's a vast improvement. I am wondering how a person decides when/how to taper back off the D3 regimen. If he goes 2-3 years between CH cycles of 2-3 months, I would assume he doesn't need the D3 all the time. I hope?

Will definitely be filling out the survey after a month, by the way, thanks Batch!
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Mike NZ
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Re: Episodic: how long to stay on D3?
Reply #1 - May 11th, 2017 at 1:10am
 
Whilst you can taper off D3, a lot of people stay on it constantly. This means that he might never even know when his next cycle comes around. Plus there are a whole lot of benefits from D3.
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Batch
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Re: Episodic: how long to stay on D3?
Reply #2 - May 11th, 2017 at 11:48am
 
Hey JMC,

I'm with Mike NZ...  The anti-inflammatory regimen is a way of life you and your husband will want want to take for the rest of your life.  Aside from preventing cluster and migraine headache this regimen has many wonderful health benefits.  See the following link at VitaminDWiki for a list of 79 health problems either prevented or successfully treated with vitamin D3.

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Human physiology needs vitamin D3 so much the skin of an adult can generate as much as 15,000 IU of cutaneous vitamin D3 in as little as 15 minutes if exposed to the UV B in direct mid-day summer sun clad in a bikini or speedo without sun block.  Unless you and your husband are professional lifeguards, I seriously doubt you've done this since you were kids... 

I'll wager your husband's lab test for his serum 25(OH)D will come back less than 40 ng/mL and very likely less than 30 ng/mL.  Accordingly, 10,000 IU/day of vitamin D3, that's 12 cents worth in USD, is a small price to pay for good health not to mention an excellent cluster or migraine headache preventative...

If you haven't already done so, you can download a copy of the latest version of the anti-inflammatory regimen CH preventative treatment protocol at the following link.  Be sure to share a copy with your husband's and your PCP or neurologist.  That way you're all singing from the same sheet music with respect to taking this regimen.

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You can also scan the following QR code with your smart phone and it will download a pdf copy of the treatment protocol to your phone as a ready reference.  The QR Scanner app is free.  It takes less than 10 seconds to download and install.

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Regarding the loading dose of 50,000 IU/day vitamin D3 for 12 days...  I still suggest your husband takes it as it will help elevate his serum 25(OH)D much faster to 80 ng/mL, the target serum concentration we need as CHers, than by taking 10,000 IU/day vitamin D3 which can take over a month...

If you've any questions or your husband has any problems, fire away.

If you decide to take this regimen along with your husband... there is one word of caution...  when couples both take this regimen, fertility goes way up...  Roll Eyes Smiley

Take care and please keep us posted.

V/R, Batch
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jmc1106
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Re: Episodic: how long to stay on D3?
Reply #3 - May 11th, 2017 at 12:57pm
 
Thank you all! I did download and print the 25-page packet on the D3 regimen. Husband did a second night at the 10,000 level (plus all the cofactors), no clusters and this morning didn't even have the nagging headache that got to him all of yesterday. Just a few shadows that came and went. Levels came back today at 25.6. I'll dig back into that information for the benefits of D3. He goes into his primary care doctor next week and I think I'll go with him as his primary Clusterhead list-searcher.  Smiley Hopefully the information will help some other patients as well. Verapamil just wasn't cutting it this time around.
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Batch
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Re: Episodic: how long to stay on D3?
Reply #4 - May 11th, 2017 at 2:14pm
 
Hey JMC,

Glad to hear your husband has the upper hand in controlling the CH beast...  Also good move on seeing your PCP... Remember to take him a copy of the treatment protocol and to ask for the same 25(OH)D lab test.  Odds are you are vitamin D3 deficient/insufficient as well. 

The normal reference range for this lab test is 30 to 100 ng/mL (75 to 250 nmol/L).  Most physicians who do not understand the benefits of vitamin D3 will interpret 31 ng/mL as sufficient and normal... 

Nothing could be farther from the truth. The optimum 25(OH)D serum concentration to maintain all the health benefits from vitamin D3 is 50 to 70 ng/mL.  The optimum therapeutic level for cluster headache sufferers is 80 to 100 ng/mL... and some times even higher. 

The labs from my last annual physical in April came back as shown below...

PSA: normal - no follow-up needed PSA:0.7

ELECTROLYTES: Good - no changes needed

KIDNEY FUNCTION TESTS: Good - no changes needed

LIVER FUNCTION TESTS: Good - no changes needed

LIPID PANEL: Good - no changes needed
Triglyceride: 122 Cholesterol: 159 LDL: 92 HDL: 43

DIABETIC STUDIES: Excellent - no changes needed

Blood Glucose: 94

CBC: Good - no changes needed

Blood count/hematocrit within the normal range

Urinalysis: Normal

Parathyroid hormone level-23, normal range 14-64.

VITAMIN D LEVEL-(normal 30-100)-139, elevated

COMMENTS:  As before, vitamin D level quite elevated however, fortunately, calcium and phosphorus as well as parathyroid hormone are okay.

As you can see from my PCP's comments, he is up to speed on the anti-inflammatory regimen so only comments on my 25(OH)D serum concentration in print to cover his backside...  and I'm a 72 year old retired Navy fighter pilot...

I've also been taking this regimen since I developed it in October of 2010.  My wife has been taking it to prevent her migraine headaches since December of 2010... She hasn't had a single migraine since then and she was 20 year episodic migraineur prior to that with migraine headaches hitting for 3 to 5 days every month regular as clockwork... 

She's 80 and has more energy that I've seen in the last 30 years...  The labs from her annual physical were the same as mine except her 25(OH)D serum concentration was 115 ng/mL... 

Our PCP just smiles when we come in for our annual physicals...  We don't get sick and we don't take any prescription medications... Only vitamins, minerals and occasional dose or two of Diphenhydramine HCL (Benadryl) to beat back allergic reactions from all the tree pollen in the March - April time frame.

Take care and please keep us posted.

V/R, Batch
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Peter510
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Re: Episodic: how long to stay on D3?
Reply #5 - May 11th, 2017 at 2:35pm
 
Hey Batch,

In my experience most physicians interpret 31 nmol/L as sufficient and normal !!!!!!!!!!!!!!

Peter.
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jmc1106
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Re: Episodic: how long to stay on D3?
Reply #6 - May 11th, 2017 at 5:45pm
 
Just curious Batch ... why would you assume that I am also D3 deficient/insufficient as well?

JMC
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Batch
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Re: Episodic: how long to stay on D3?
Reply #7 - May 12th, 2017 at 7:15pm
 
Hey JMC,

Good question...  After more than six years working with over 500 CHers here at clusterheadaches.com and all over the world and with data coming from the online survey of 187 CHers taking the anti-inflammatory regimen to prevent their CH... All of them have serum 25(OH)D concentrations less than 47 ng/mL with the mean at 22.8 ng/mL.

In short, the cluster headache disorder is caused in part, by a vitamin D3 insufficiency/deficiency.  Accordingly, it's a no brainer when you see the following normal distribution curve for their serum 25(OH)D lab test results prior to starting this regimen...  It tells the story...

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I based my assumption that you were likely vitamin D3 insufficient/deficient on the fact your husband was vitamin D3 insufficient and that you both likely spend roughly the same amount of time outside and as you're not a SoCal Lifeguard... Moreover as roughly 70% of people here in the US are vitamin D3 insufficient/deficient...  it's a good guess... 

Please prove me wrong and get the lab test for your serum 25(OH)D.

Hope this answers the mail.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: May 12th, 2017 at 7:48pm 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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Re: Episodic: how long to stay on D3?
Reply #8 - May 12th, 2017 at 9:48pm
 
Yo Batch,
Do you have a color preference for your mid day summer sun speedo sessions?  Cheesy

Hope all is well with you pal.

-Gregg in Las Vegas
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Batch
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Re: Episodic: how long to stay on D3?
Reply #9 - May 13th, 2017 at 2:49pm
 
Hey Gregg,

Doing just fine here... Getting ready to split for Pelican, Alaska for a few weeks fishing for some big King Salmon and Flattys (Halibut).

Regarding mid-day UV B ray recovery apparel, I prefer Duluth Trading Co. Buck Naked Underwear...

Their TV ad was so corny I tried a pair a few years back... They're great!  I've been wearing them ever since... And, as I've taken geezing to an art form at my age, they're  perfect for all occasions...

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They even have versions for the ladies...

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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Peter510
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Re: Episodic: how long to stay on D3?
Reply #10 - May 13th, 2017 at 5:14pm
 
Jeez Batch,

You bought a pair a few years back and you've been wearing them ever since.

Don't ya think it's time to change them ????????

P.
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Mike NZ
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Re: Episodic: how long to stay on D3?
Reply #11 - May 13th, 2017 at 6:27pm
 
Thanks for the Sunday morning laugh Peter!
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Batch
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Re: Episodic: how long to stay on D3?
Reply #12 - May 14th, 2017 at 4:13am
 
If you watch the Duluth Trading Co TV ad for Buck Naked Underwear...  The last lines are "No Sweat" and "No Stink."   Roll Eyes

The American comedian Milton Berle known to millions of TV viewers as "Uncle Miltie" and "Mr. Television" during TV's golden age used to say... "I've done everything in my BVDs."  He was kind of like your Benny Hill or Paul Hogan except he predated them by several decades...

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Accordingly, the Buck Naked Underwear have held up admirably under adverse conditions...

However, as I now have over a dozen pair of these beauties,  I do change them daily... except possibly when out in the field for a few days hunting or spending the night on a boat while fishing areas away from home port...

Guys... and gals... you must understand that 07:00 Monday morning I'll be headed for Pelican, AK for three weeks fishing...  My tackle box was fully provisioned over two months ago and my backpack has been loaded with fresh Buck Naked underwear and lots of polar fleece fuzzies since I got back from a reunion of F-8 Crusader Drivers in San Diego a week ago. 

All I need to do Monday morning is load the fish box with frozen beef, my tackle box and fishing knives then I'm out of here at 07:00 for the drive to Seattle and the flight to Juneau...  After additional provisioning at Costco or Fred Meyer in Juneau, I'll grab a Beaver for a one hour dash and splash at Pelican...

Here are the visions that have been running through my mind for months...

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I'm taking my laptop to Pelican for the first time in six years, but don't count on my presence on line...  With 16 hour fishing days from getup to the last vacuum sealed fillet in the freezer and over 1100 feet down the boardwalk to the Pelican Library WiFi hub, I may not get on line all that often. 

Accordingly, for the old hands experienced with the anti-inflammatory regimen, please jump in and respond to questions that pop up...  I'll be back on 9 June...

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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Peter510
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Re: Episodic: how long to stay on D3?
Reply #13 - May 14th, 2017 at 5:35am
 
Keep your fish (and everything else) fresh and enjoy your trip. Looks outstanding.

By the way, I remember Milton Berle well and he was far funnier than Benny Hill.

P.
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Re: Episodic: how long to stay on D3?
Reply #14 - May 14th, 2017 at 5:34pm
 
Tight lines and fun times Batch.

The photos you post of your fishing trips always look amazing and I'm sure that many of us wish we were there enjoying it too.
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Re: Episodic: how long to stay on D3?
Reply #15 - May 14th, 2017 at 5:57pm
 
Pete, imagine you will have a wonderful time and catch plenty of fish. Enjoy! Wink

-Gregg in Las Vegas
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