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bsic CH.com Junior Offline Posts: 46 Gender:	Re: 123 Days PF And I Think I know Why Reply #525 - Jan 1^st, 2012 at 9:14am Hey Batch, It's in ng/mL, 20.9 to be exact. Look fwd to your pm! Happy new yr!
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Batch CH.com Alumnus Offline Control The Beast With O2 & D3 You Must Posts: 3708 Bremerton, WA Gender:	Re: 123 Days PF And I Think I know Why Reply #526 - Jan 1^st, 2012 at 1:34pm Hey Bsic, Happy New Year to you too... PM sent. Take care and please keep us posted. V/R, Batch
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Dorothy

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Re: 123 Days PF And I Think I know Why
Reply #527 - Jan 4^th, 2012 at 8:08am

It's been quite a while since I checked in here (long remission) and because I've found some really helpful info on these forums in the past - I came to find any I could pass on to someone who seems in desperate straits. His Health Ins have stopped paying out for his meds and 02. I couldn't believe all the stuff I found about the Vitamin D3 therapy. I have osteoporosis and I am very remiss in taking my D3 but I'll be taking it from now on - along with some additional Omega 3. Batch, I have used your oxygen advice to show people and had great results with it - I showed it to the manager of my oxygen provider - it was easier than trying to explain to him about hyperventilation being necessary and the info about C02 build up etc. I just printed some of your stuff out and happily he read through it all. He even came out to visit me and took it all on board. He now liases with OUCH as they try to improve 02 therapy in the UK. It's fantastic there are people like you out there battling the beast.

Happy New Year!

Dorothy

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IndianaJohn

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Re: 123 Days PF And I Think I know Why
Reply #528 - Jan 4^th, 2012 at 1:35pm

Hi, I could use a little help please...

I am not sure I have the correct formulations for the D3 regimen. I tried it starting Dec. 10 and found no relief. This is what I bought at Walgreen's and the dosage below:

Current D3 Vitamins

D3 Brand: Finest Natural®, 5000 IU soft-gels, D3 as cholecalciferol. X2

Omega 3 Fish Oil Brand: Finest Natural®, 1000 mg soft-gels, 600 mg Total Omega-3 Fatty Acids, NO LISTING for EPA or DHA. X2

Calcium Brand: Walgreen's, Calcium Citrate Plus with Magnesium tablets. X1
Vitamin D3 (as cholecalciferol) 250 IU
Vitamin B-6 (as pyridoxine hydrochloride) 10 mg
Calcium (calcium citrate) 500 mg
Magnesium (magnesium oxide) 80 mg
Zinc (zinc oxide) 10 mg
Copper (copper gluconate) 1 mg
Manganese (manganese gluconate) 1 mg
Boron (sodium borate) 1 mg

Magnesium Brand: Nature Made®400 mg soft-gels X1

Potassium Brand: Finest Natural®, Potassium Gluconate 595 mg (99 mg as Elemental Potassium), tablets. X1

8 oz. glass of lemonade from concentrate.

OTHER
Melatonin, Brand: Nature Made®, 3 mg tablets. X2-4 at bedtime

Alive Men's energy mulitvitamin.

Next I kind of have a recent timeline of where I am at.

Current Timeline

Dec. 10, 2011 Started detox. Off of all meds. Started D3 regimen.

Dec. 29, 2011 Went to the doctor and got 60 mg Prednisone taper and 480 MG Verapamil ER. Blood taken for Testosterone, CBC w/ sed rate, and 25(OH)D. Received Oxygen set up for CH. STOPPED D3 REGIMEN and Melatonin.

Jan. 1 – Jan. 2, 2012 Two nights no CH.
Jan. 3, 2012 Received blood test results.
Testosterone 401 – on low side
CBC normal
Sed rate normal, no inflammatory markers
25(OH)D = 31.8 ng/ml
Today, Jan.4, I talked to my GP about the result and I decided to restarted the D3 regimen at the above dosages.

I am sorry this is so long, please bear with me. My first question is about Vitamin K and Potassium. Are they the same? Am I over doing it with amount I'm taking above? I realize my PF nights are more than likely due to the Pred. But I was surprised my D3 levels were so low. My next question is, are the formulations I bought adequate to cover the requirements of the D3 regimen? Do they cover the basics? Am I doing anything wrong?

Any insights or suggestions would be greatly appreciated....

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #529 - Jan 4^th, 2012 at 2:04pm

Hey Dorothy,

Thank you for the kind words... but it's CH'ers like you who take the bull by the horns to educate doctors and home oxygen therapy providers that are making the real difference...

You're providing the latest in continuing medical education (CME) with respect of oxygen therapy with hyperventilation as a safe and effective CH abortive, and the anti-inflammatory regimen as a safe and effective CH preventive. Please keep it up... all physicians are required to accomplish CME each year...

Take care,

V/R, Batch

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RTD

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Re: 123 Days PF And I Think I know Why
Reply #530 - Jan 4^th, 2012 at 2:23pm

Well Like so many on here, I haven't been on in a while. So log in fact I had to re-register. Anyways quick history. 30 plus year episodic. And like so many others, things that worked before don't work again. As I hit my 50's I was hoping for it to go away. My father who had CH went into remission at 49. While my last 3 cycles have been what I would call mild, this one right now is not. My cycle's and triggers seem to be different than most but after years and years of trying to figure it out I was pleasantly surprised to find This post. I have tried most preventative and abortive med's and what I've found at least for me anyways, that they seem to just prolong my cycle, so I don't use them anymore. So the whole vitamin thing is right up my alley. Started 10,000 IU of D3 and 4000 Omega 3 a week ago. The first couple of day's seemed like it was helping but it seems to be waring off. Of course I hadn't read the whole post through and didn't realize that calcium, Magnesium is needed as well so I started that today as well as Lemonade. Let you know what Happens............ On a side note, Batch. You and so many others on here are more valuable to me than any of the nuero's I've been too. Most of the time I feel like I know more about CH than they do. In any case I thank you all for sharing what helps you get through these things......

Best regards
Rick

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #531 - Jan 4^th, 2012 at 2:24pm

Hey John,

Thank you for the "SITREP." You've got the right stuff... The regimen you've selected is correct as well. Your 25(OH)D lab results tell the story... While the normal reference range for this metabolite of vitamin D3 is 30 to 90 ng/mL, the data I've collected from CH'ers who have gone pain free on this regimen suggests the target therapeutic range for a favorable response to this regimen is 60 to 90 ng/mL. Restarting the anti-inflammatory regimen was a good move...

You need to increase your 25(OH)D concentration by 30 ng/mL. Talk with your doctor about this... At a vitamin D3 dose of 10,000 IU/day, it could take as long as two weeks for you to build 25(OH)D concentration to 60 ng/mL. Doubling the daily dose to 20,000 IU/day might get you there a little faster... Some CH'ers are working through their PCP and dosing as high as 30,000 IU/day...

I know that may sound like a lot... but our skin can make 15,000 IU vitamin D3 in as little as 15 minutes of direct sunlight clad in a bathing suit... so in reality... 30,000 IU/day of vitamin D3 is no biggie... Please keep us posted...

The basic rule of thumb is have your 25(OH)D concentrations tested every 30 days if you exceed 10,000 IU vitamin D3/day. And when you do go PF, drop the dose back to 10,000 IU/day. That should hold you in the target therapeutic range.

Thanks again for the SITREP and take care

V/R, Batch

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #532 - Jan 4^th, 2012 at 5:06pm

Hey Rick,

Thanks for the kind words. We CH'ers have the advantage over most of the neurologists who treat us... Necessity is the mother of invention, and pain is a great motivator...

Few neurologists suffer through very painful conditions like ours... Finding one who does like Dr. Todd Rozen, M.D., a chronic migraineur, is like finding a kindred spirit who really understands what we face on a daily basis. Makes a big difference... The rest we'll just need to educate for now.

As I've indicated in earlier posts on the anti-inflammatory regimen with vitamin D3... having the lab test for 25(OH)D is a big help in knowing where you are in the process of building sufficient levels of this vitamin D3 metabolite we need to reach a therapeutic response.

And if you are fortunate enough to number among the 70% of CH'ers who respond to this regimen, be sure to take the survey after you've had a significant reduction in the frequency and severity of your CH or gone PF for a week or so.

Take care and please keep us posted.

V/R, Batch

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Dorothy CH.com Newbie Offline Veteran CH victim Posts: 20 x0\|Sunderland\|United_Kingdom\|\|0\|0\| Gender:	Re: 123 Days PF And I Think I know Why Reply #533 - Jan 4^th, 2012 at 7:19pm Maybe if I start on this I won't go into cycle..... Thank you for the advice Batch, I've passed on the link to a few people.
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bsic

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Re: 123 Days PF And I Think I know Why
Reply #534 - Jan 5^th, 2012 at 8:41am

15 days in, upped my dosage of D on Sunday and am taking all the supplements.

Seems to be fewer and less intense hits. 1-2 hits per night which O2 is handling great but still need imitrex for some. Prior to that, it was 3-4 hits per night and O2 didnt really touch them. Think Im making progress or just ending my cycle-- either way im happy.

This has been the longest and most brutal of all my years with CH. I cant WAIT until its over.

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« Last Edit: Jan 5^th, 2012 at 12:32pm by bsic »

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RTD CH.com Junior Offline I thought it was just me Posts: 36 Las Vegas Gender:	Re: 123 Days PF And I Think I know Why Reply #535 - Jan 5^th, 2012 at 10:39am Hey Batch, I have a question for you. When do you take the calcium/mag/zinc and lemonade? Before, with or after the vitamins? Thanks in advance Rick
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LasVegas

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Re: 123 Days PF And I Think I know Why
Reply #536 - Jan 5^th, 2012 at 12:22pm

RTD wrote on Jan 5^th, 2012 at 10:39am:

Hey Batch, I have a question for you. When do you take the calcium/mag/zinc and lemonade? Before, with or after the vitamins?

Thanks in advance
Rick

Rick,
I can answer that...WITH Wink

!
13+ of these horse pills all washed down with a tall glass of lemonade! Good Luck!
-Gregg in Las Vegas

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RTD CH.com Junior Offline I thought it was just me Posts: 36 Las Vegas Gender:	Re: 123 Days PF And I Think I know Why Reply #537 - Jan 5^th, 2012 at 12:32pm Thanks Gregg............. You live in Las Vegas huh? Me too.
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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: 123 Days PF And I Think I know Why Reply #538 - Jan 5^th, 2012 at 12:46pm Hi Rick, Yes, almost 20 years here in Sin City. Anytime you want to get together for coffee, discuss ignorant Las Vegas neuros, etc; send me a PM and will meet and greet. -Gregg
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RTD CH.com Junior Offline I thought it was just me Posts: 36 Las Vegas Gender:	Re: 123 Days PF And I Think I know Why Reply #539 - Jan 5^th, 2012 at 1:24pm So I take it you wouldn't recommend any LV Nuero's.... A meet and greet would be great. Cheers Rick
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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: 123 Days PF And I Think I know Why Reply #540 - Jan 5^th, 2012 at 1:43pm Rick, Unfortunately, I have not found anybody who isn't ignorant and also egotistical prohibiting themselves from being educated by a 32 yr experienced CH sufferer. Check your PM inbox for my phone #. -Gregg
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Batch

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Re: 123 Days PF And I Think I know Why
Reply #541 - Jan 5^th, 2012 at 10:14pm

Hey Dorothy,

Thanks for the plug... Having more CH'ers try this simple regimen is going to result in more CH'ers discovering just how effective it can be in preventing CH...

Rick, Gregg, glad to see you two have made a connection. I'm sure you'll have much to exchange as a meet between CH'ers is always a hoot.

Rick, regarding when to take the anti-inflammatory supplements... As long as you're taking calcium citrate and no more than 500 mg in one dose, you can take it any time of the day... If you're looking to maximize the buffering effect of calcium citrate and citric acid from lemonade or other fruit juice high in citric acid, taking the calcium citrate is best done an hour to half hour prior to the evening meal washed down with the lemonade. This will have the calcium citrate completely dissolve and the buffer active when the stomach starts producing more acid to help digest the food you eat.

If you're taking calcium carbonate, it's best taken with food as this form of calcium requires an acidic pH to dissolve. In short, take it just prior to or just after the evening meal.

Hope this helps.

Take care and please keep us posted.

V/R, Batch

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PlayDoh

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Re: 123 Days PF And I Think I know Why
Reply #542 - Jan 6^th, 2012 at 12:05am

So I've been having a problem with, um, regularity which has become an issue for a few months before starting the regime. Yet 3 days ago I took some Ex-lax "gentle nature" with senna. I took some a couple hours after dinner, say 7 and again before bed at 11.

I also take an anti-depressant (SSRI), and I could feel withdraw symtoms just before I went to bed. SSRI's have a very short half-life, meaning they wear off and are out of your system in a day or so. Now when I woke up the next day, I felt like I hadn't taken an anti-depressant in 2 days, the withdraw symptoms were so bad.

Did I mention I got 2 kip 1-3's that night also? That tells me the regime is definitely keeping me PF, and I'm still in cycle.

The moral of the story is if your digestive system isn't operating normally, then your D3 regime probably wont be as effective. And, stay away from laxatives, at least during the first couple months or so.

I think I'll bump myself up to 15,000 IU D3 till I see my Dr in a couple weeks. I seem to be just getting enough D3 to stay PF. Yet that's a guess.

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LasVegas

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Re: 123 Days PF And I Think I know Why
Reply #543 - Jan 6^th, 2012 at 12:17am

Playdoh,
I think you make a great argument to speculate.

Many Verapamil users get constipated as a side effect of the med. I was one of the lucky ones and increased my daily fiber to avoid constipation.

If your theory is correct, maybe that is why this vitamin regimen did not work for me.

Curious what Niels and Batch have to say about your theory!? Roll Eyes

-Gregg in Las Vegas

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Dorothy CH.com Newbie Offline Veteran CH victim Posts: 20 x0\|Sunderland\|United_Kingdom\|\|0\|0\| Gender:	Re: 123 Days PF And I Think I know Why Reply #544 - Jan 6^th, 2012 at 5:33am I'm loving these posts, it's all so positive! I've been looking at OUCH's facebook page and there's a lady on there who is taking the high dose vitamin D3 so the word is getting out
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Dorothy CH.com Newbie Offline Veteran CH victim Posts: 20 x0\|Sunderland\|United_Kingdom\|\|0\|0\| Gender:	Re: 123 Days PF And I Think I know Why Reply #545 - Jan 6^th, 2012 at 5:36am someone has just asked me for the link
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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: 123 Days PF And I Think I know Why Reply #546 - Jan 6^th, 2012 at 9:10am Keep spreading the good news! I'm convinced the regimen is why my fall cycle never materialized, I'm a year rounder on this regimen for good. Joe
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RTD

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Re: 123 Days PF And I Think I know Why
Reply #547 - Jan 6^th, 2012 at 10:47am

Batch,
I don't know if I'm doing this wrong and unfortunately sometimes don't understand your vast knowledge of how this all works. I started the with 10,000 IU-D3/4000 omega3 a week ago. Went and got the Nature Made Calcium 333mg/Mag 133 mg/zinc 5 mg/D3 200 IU and started taking that 3 days ago. Took 1 the first day. 2 the next 2 days. I'm a little confused on the difference between Calcium Carbonate and Calcium Citrate. In any case I notice you said in an earlier post no more than 500 mg of Calcium, which by taking two a day I'm getting 666 mg. Is that too much? Should I change to Calcium Citrate?... The reason I ask is because I'm not having much success and while I know some things work for some and not for others, I want to give this regime a fair shake to work especially since there seems to be zero side effects. Through the years and all the stuff that I've tried and had work one time and not the next I'm not surprised. I appreciate you taking the time with this and your patience with me.

Thanks
Rick

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #548 - Jan 6^th, 2012 at 4:47pm

Hey Rick,

Good questions and I'm glad you've started the anti-inflammatory regimen... I think you'll find that was a wise decision...

It looks like I should have explained the calcium dosing strategy a little better...

For starters... You're ok in splitting the calcium supplement dose to twice a day... The calcium to magnesium ratio is also excellent in the supplements you're taking... There's no consensus on the best calcium to magnesium ratio but it appears that anywhere in a range of 4:1 down to 1:1 is acceptable.

According to the experts at the Vitamin D Council, magnesium is one of the most important "Cofactors" that enable vitamin D3 to be metabolized into 25(OH)D. Vitamin K2, Zinc and Boron are the other cofactors.

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

or

for an explanation of why we need to take these cofactors when taking vitamin D3.

This link also has another link to ZRT Labs where you can order a 25(OH)D home blood spot test kit for $65 and you don't need an Rx or a trip to the doctor's office... I have two of the kits sitting next to my computer...

Regarding the dosing limits on calcium... The body can only process 500-600 mg of calcium effectively in a single dose... any more than that and the excess calcium goes down the drain without doing any good... No bad side effects... you're just not getting the best bang for the buck...

As far as the difference between calcium carbonate and calcium citrate... Both can be effective, but you get better bioavailability (better absorption so more reaches your system) with calcium citrate or calcium gluconate than with calcium carbonate. Calcium carbonate has a stronger chemical bond that requires a low pH (more acid) to break down or disassociate into it's ionic components and into the bloodstream... Accordingly, calcium carbonate should be taken with food so the hydrochloric acid in the stomach can break it down...

You're doing great at this point and the only thing I'd suggest is to ask your PCP or neurologist for the lab test for 25-Hydroxyvitamin D, a.k.a. 25(OH)D so you'll know where you are in the process of elevating the level of this vitamin D3 metabolite up and into the therapeutic range for cluster headache.

Data I've collected from CH'ers who have gone pain free of their CH while taking this regimen and posted the results of their 25(OH)D lab tests, suggest the target therapeutic range of 25(OH)D concentrations needed to remain PF of cluster headache is 60-90 ng/mL, (150-225 nmol/L).

Assuming normal kidney and liver functions, the average adult will metabolize vitamin D3 into 25(OH)D and increase its serum concentration by 0.444 ng/mL/day at a dose of 10,000 IU/day vitamin D3...

So let's use the following example to show why some CH'ers respond to this regimen in a few days while others take up to three weeks to a month... or much longer before going PF.

Let's say your 25(OH)D tested at 20 ng/mL before starting the anti-inflammatory regimen and you need to have it at 60 ng/ml in order to be PF from your CH. That means you need to increase the concentration of your 25(OH)D by 40 ng/mL.

If you do the math... Divide 40 ng/mL by 0.444 ng/mL/day and you get 90 days... That means it could take 90 days at a dose of 10,000 IU/day vitamin D3 to experience a favorable reaction to the anti-inflammatory regimen... because it would take that long to build 25(OH)D reserves to a therapeutic concentration...

Although responses to the On-Line Anti-Inflammatory Regimen Survey are coming in slower than I'd hoped, the time to respond to this regimen is holding consistent.

So far the Survey data suggests that most CH'ers will respond to the anti-inflammatory regimen with a significant favorable change in CH patters within 10 days after starting this regimen and nearly all who do have a favorable response, are pain free by the end of the third week... Two have taken as long as a month.

Bottom line... take the test for 25(OH)D even if you've already started the anti-inflammatory regimen... and take it again after you've gone pain free.

Take care and please keep us posted.

V/R, Batch

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MemyselfandI

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Re: 123 Days PF And I Think I know Why
Reply #549 - Jan 6^th, 2012 at 8:45pm

Hey Gang,
I had an interesting email from my pcp today. Two days ago after 3 weeks on the vitamin d therapy I had my 25(OH) D level tested. (She didn't leave me the units for the level but since we're in Canada I'm going to assume that the level is in nmol/L so I'll convert to ng/ml for simplicity) The vit D level was at 23.6 ng/ml.
I have noticed since the start of the therapy that the headache intensity has dropped. At 2.5 weeks I was wondering why I was still getting milder hits. I can see the reason now. Even at the low Vit D level I had a hit yesterday that I was able to kill off with just tylenol.
I'm excited to try and get my D level up to the optimal level in the 60 - 90 ng/ml range. I might even be able to break out the alcohol again.

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