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hell-jee

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Re: 123 Days PF And I Think I know Why
Reply #1575 - Nov 13^th, 2013 at 3:07pm

Hi Batch!

Thank you so much for your reply on Anthony's threat and that link. Thought I'll go on posting here.

Because of my lower abdominal discomfort I took only vit K and magnesium on Friday and Saturday, my abdomen felt better but had 2 hits again Saturday night, so I took everything again but the calcium on Sunday, and only magnesium yesterday and today.

Went for test today and like Sue vit D high at 108.3 ng/ml, Calcium at the high end 2.32 mmol/l and PTH in the middle at 39pg/ml. If I understood correctly you said something about if the Ca is to the higher end the PTH must be to the lower end then it is ok?

I am going to see a naturalpath who is also a medical dr next week to help me. My GP is not interested.

You are such a clever guy, thanks a million!!

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1576 - Nov 13^th, 2013 at 5:48pm

Hell-Jee,

I'm not a physician and clearly not qualified to interpret medical diagnostic lab results... That said, I did stay at a Holiday Inn a few years ago... and I've been looking at lab tests from CH'ers taking this regimen like you for nearly 3 years...

Accordingly, I'd say your labs are spot on... 108.3 ng/mL is clearly in the "Green Zone" (60 to 110 ng/mL) where most CH'ers experience a favorable response to the anti-inflammatory regimen. Yes... it's above the normal reference range of 30 to 100 ng/mL. However, as long as your total calcium is within limits, there shouldn't be any worry.

That concentration should also keep you pain free or at least significantly reduce the frequency, severity and duration of your CH.

Your total calcium at 2.32 mmol/L is well within the normal reference range, 2.2 to 2.6 mmol/L as expected, so there's no indication of vitamin D3 intoxication.

As your total calcium is in the lower half of it's reference range, your PTH at 39 pg/mL is as expected, in the middle of its normal reference range (17 to 70 pg/mL).

I can't speak for the Naturopathic physician. However, once you explain your use of the anti-inflammatory regimen, the target 25(OH)D serum concentration you're shooting for, and the results from using this regimen with respect to controlling your cluster headache, I'd be surprised if your Naturopathic/Integrative physician didn't concur...

Take care, and please keep us posted.

V/R, Batch

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« Last Edit: Nov 13^th, 2013 at 5:49pm by Batch »

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shooky CH.com Veteran Offline 33 years of CH. Posts: 193 TLV Israel Gender:	Re: 123 Days PF And I Think I know Why Reply #1577 - Nov 13^th, 2013 at 7:07pm Any suggestions for me (my question is just before sue's...)?
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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1578 - Nov 13^th, 2013 at 11:30pm

Hey Shooky,

Sorry about the late response to your question... 67 ng/mL is at the low end of the 60 to 110 ng/mL "Green Zone."

That said, given you're already at 67 ng/mL after 10 days at 15,000 IU/day and earlier at 10,000 IU/day, bumping your daily vitamin D3 intake to 20,000 IU/day for one week and adding a single 50,000 IU loading dose should boost your 25(OH)D into the high end of the green zone.

That should provide a therapeutic response with a cessation of your CH or significant reduction in the frequency, severity and duration of them. If that doesn't take you pain free, take one more 50,000 IU loading dose on top of your maintenance dose...

Try to get another lab test for 25(OH)D 30 days after increasing your dose to 15,000 IU/day.

Take care and please keep us posted.

V/R, Batch

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shooky CH.com Veteran Offline 33 years of CH. Posts: 193 TLV Israel Gender:	Re: 123 Days PF And I Think I know Why Reply #1579 - Nov 14^th, 2013 at 5:21am Thanks Batch. I sure will. Meanwhile: PF again for the 2nd day.
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Batch CH.com Alumnus Offline Control The Beast With O2 & D3 You Must Posts: 3706 Bremerton, WA Gender:	Re: 123 Days PF And I Think I know Why Reply #1580 - Nov 14^th, 2013 at 8:05am Woo Hoo! That's the kind of news I love to hear. Good on you Shooky! Take care, V/R, Batch
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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 #1581 - Nov 14^th, 2013 at 8:57am I'm not a physician and clearly not qualified to interpret medical diagnostic lab results... That said, I did stay at a Holiday Inn a few years ago... yer killing me smalls!!! Shooky that's awesome news, over 3 years pain free here on the "Batch Regimen"...may your results echo mine! Joe
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shooky CH.com Veteran Offline 33 years of CH. Posts: 193 TLV Israel Gender:	Re: 123 Days PF And I Think I know Why Reply #1582 - Nov 14^th, 2013 at 5:11pm Thanks guys, but several hours after my last post I got another attack. Was out and it took me some time to get to the O2, so it was a nasty one. But then again - took me only 6 minutes to abort. Will up the D3 and keep you posted.
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erk

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Re: 123 Days PF And I Think I know Why
Reply #1583 - Nov 15^th, 2013 at 1:36pm

I had been enjoying 6 months pf with this regimen, till the beast showed back up 2 weeks ago. I might have missed a few days here and there, but mostly I kept taking 10,000 iu.s d3 along with the other cofactors.

I had blood work done a week ago and the results:
25(oh) D= 74 ng/ml
calcium= 9.7 mg/dl
Doc said everything looked great except for lipids (total cholesterol-235, ldl-138, hdl-44 m/dl)

I know 74 ng/ml is a little below the ideal, but back in May when I went pf my d3 level was 60 ng/ml. I had to add the baking soda/alka seltzer trick to get pf and I have restarted this again right after the first ha.

Thoughts Batch????

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« Last Edit: Nov 15^th, 2013 at 2:19pm by erk »

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1584 - Nov 15^th, 2013 at 6:06pm

Hey Erk,

Thanks for the update. Based on a lot of reading backed up by feeback from hundreds of CH'ers using this regimen... it appears that seasonality - less direct UVB from sunlight in the fall and winter months and competing biological processes can result in lower serum concentrations of 25(OH)D and/or the active metabolite 1,25(OH)2D3.

The net result is a maintenance dose of 10,000 IU/day vitamin D3 may not be sufficient to keep us pain free 100% of the time.

Competing biological processes include, but are not limited to, immune system responses to viral and bacterial infections, (colds & flu), sub-clinical allergic reactions to pollen, fungus & mold spores, and other airborne irritants.

Any of the above conditions are capable of triggering inflammation with an immune response... This list represents the most common culprits, but it's not all-inclusive as there are obviously other sources of inflammation...

Our immune system's T-Cells are major consumers of both 25(OH)D, (calcidiol) and 1,25(OH)2D3, (calcitriol). Moreover, it shouldn't come as a surprise that trauma and surgery are also major consumers of 25(OH)D and 1,25(OH)2D3 as both result in inflammation.

There are several studies that have found that serum 25(OH)D concentrations can drop by 40% or more due to trauma or surgery. We have one CH'er who broke his ankle while on the anti-inflammatory regimen and had his cluster headaches flare up within a few days.

He was taking 15,000 IU/day vitamin D3 prior to the fracture and his 25(OH)D was holding around 85 ng/mL. Vitamin D3 was providing a significant reduction in the frequency and severity of his cluster headaches.

A few days after the fracture... Whamo! His cluster headaches came back with a vengeance. I suggested he see his doctor for another 25(OH)D lab test and increase his vitamin D3 intake if it was below the "green zone." He went in for lab test and sure enough, his 25(OH)D serum concentration had dropped below 60 ng/mL.

He discussed an increase in his vitamin D3 intake with his doctors, who have been keeping close tabs on his progress with this regimen, then increased it to 25,000 IU/day and added a 50,000 IU loading dose once a week on top of the daily dose. After two weeks, he went in for another 25(OH)D lab test.

450,000 IU of vitamin D3 over two weeks should have elevated his 25(OH)D up to at least 100 ng/mL... if not higher... It was 62 ng/mL...

It's clearly possible there are other reasons for the low 25(OH)D response... That said, it sure looks to me that inflammation associated with the fractured ankle is the obvious culprit...

The good news is his cluster headaches are back under control...

The bottom line... One size doesn't fit all when it comes to cluster headaches... We've learned this time and time again over the years... I arrived at a 10,000 IU/day vitamin D3 dose for several reasons...

One of the reasons for this dose is it results in an average 25(OH)D serum concentration of 80 ng/mL... and that proves effective as a preventative for 80% of the CH'ers who use it... under "normal" conditions... Some of us will need a higher dose at times.

When that happens and you do need more vitamin D3, see your PCP for a lab test for 25(OH)D then adjust your vitamin D3 intake as necessary.

Try to keep your vitamin D3 intake at or below an average of 30,000 IU/day, 900,000 IU/month until you're again pain free then drop back to a maintenance dose that sustains a pain free response.

If you do increase your vitamin D3 dose over 10,000 IU/day, be sure to get tested again for 25(OH)D, total calcium and PTH (parathyroid hormone) after a month.

If your PCP or medical insurance reps give you a bad time or say "No" to the additional lab tests... Tell them you can always go back to home oxygen therapy and the nine sumatriptan succinate (imitrex/imigran) injections a month at $100 a pop street price then see what they say...

If that doesn't work, and you live here in the US... call your state medical insurance commissioner and explain the situation along with the economics of vitamin D3 therapy... They're getting all kinds of attention now that the wheels are falling off obamacare...

Take care,

V/R, Batch

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« Last Edit: Nov 16^th, 2013 at 12:44pm by Batch »

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shooky

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Re: 123 Days PF And I Think I know Why
Reply #1585 - Nov 24^th, 2013 at 6:24pm

After 10 days on the daily 20,000 IU D3 + one loading dose of 50K IU. No noticeable change I'm afraid. Will try another loading dose in a few days, but in this point (7 weeks into cycle) if I go PF I will not be able to tell if that's my the end of my cycle or the green area. Sad

On the bright side: I'm getting hit several times every day and once or twice every night, but most of the time attacks are easily aborted with O2. Whether it is the regimen, the better use of O2, or any of the other changes I made, this cycle is not nearly as terrible as the one I had last year. And no prednisone this time

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: 123 Days PF And I Think I know Why Reply #1586 - Nov 24^th, 2013 at 9:41pm Hi shooky, If you are a typical Spring and Autumn CH sufferer like me then your cycle should soon be over. In the meantime, take 25,000iu D3 daily this may help end the cycle. I started the D3 regime Spring 2012, it did'nt stop my CH's then, but i've been pain free ever since. Hoppy.
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shooky

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Re: 123 Days PF And I Think I know Why
Reply #1587 - Nov 25^th, 2013 at 8:26am

Thanks Hoppy. I don't know if that's what I am.

My last 3 cycles started May 2010, July 2011 and late August 2012. This one started October 2013. So I guess I'm more of a Summer & Autumn sufferer (although 2009 cycle started in January. Prior cycles were mostly during between May and September though).

My 25OH was 67ng/ml two weeks ago, so I guess it should be somewhere around 75-80ng/ml by now.

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: 123 Days PF And I Think I know Why Reply #1588 - Nov 25^th, 2013 at 4:08pm Hi shooky, It will never cease to amaze me, how the works in such mysterious ways. Hoppy.
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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: 123 Days PF And I Think I know Why Reply #1589 - Nov 26^th, 2013 at 12:43am And I can now post a variation on the subject as: Quote: 666 Days PF And I Think I know Why For anyone reading and still needing to be convinced, please do give this a go as it really does work for so many of us.
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shooky

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Re: 123 Days PF And I Think I know Why
Reply #1590 - Nov 26^th, 2013 at 5:08am

As I already said, even though the regimen didn't make me PF (yet...) my attacks are far less sever than in past cycles and are easier to abort. 4-6 minutes with O2 were enough in most cases, and I didn't even have to hyperventilate.

This happens after several years in which my cycles became longer and more brutal from year to year.

Also, my test results are much much better than last year on any aspect (LDL down, T up, GGT/GOT down etc.). This may be also due to the fact that I lost some weight, but the results are better even compared to those I got 10 years ago when I was both younger and thinner.

So yes, the regimen does seem to do a lot of good for me even though I'm not PF. yet...

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Rumeke

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Re: 123 Days PF And I Think I know Why
Reply #1591 - Nov 26^th, 2013 at 6:08am

Shooky,
I understand your frustration. I've been in a erratic cycle since August (I'm normally a 2 month spring girl) and although I have been on 15,000 D3 since mid Sept. am still not PF. I am up to 20,000 and will do a loading dose tonight, then back to the PCP after another week to see where I stand.

I honestly believe the mild summer and crazy weather back east have messed my cycles up. My friends are having more migraines too.

Here's hoping your cycle ends either from the regimen or naturally. Either way, wishing you PF days ahead.

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shooky CH.com Veteran Offline 33 years of CH. Posts: 193 TLV Israel Gender:	Re: 123 Days PF And I Think I know Why Reply #1592 - Nov 26^th, 2013 at 7:52pm Ditto
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sue_g

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Re: 123 Days PF And I Think I know Why
Reply #1593 - Nov 27^th, 2013 at 5:20pm

Hi Batch and all!
Well here's a brief recap: Started Regimen Mid Sept.
Sept 25 - 86 nmol/L
Oct 11 - 170 "
Nov 8 - 373 "
PF now no break thru's since Nov 22nd, (whooohoo! lol, something to dance about eh)
Here's the scoop with the intake of D3
- Was doing 25,000/daily
- Week of Nov 10th: deceased D3 to 15,000/daily
- Week of Nov 17th: deceased D3 to 6,000/daily and continuing.

Three questions I'd like your advise on Batch!
1.) Do you feel I should increase my D3 intake to 10,000 instead of staying at the 6000/daily?

2.) I have a concern: The Semimembranosus or Semitendinosis muscle (back of femur bone)has been achey for about two weeks now. Last night I woke up with a wicked charlie horse. Got up, finally got my foot to the floor, instantly felt hot, dizzy,queezy and immediately laid down across the bottom of my bed lengthwise. If not, I think I was going to pass out! Crazy eh.
Long story short, do you think this has anything to do with my 25(OH)D level?

3.) I have a neuro appointment Jan 6th, I'd like him to get on board with this... yeah, I know... we'll see.
Do you think Dec 30th would be the ideal time to re-test the 25)OH)D again?

Appreciate your thoughts, as always!! Your the best, Thanks again! Happy Thanksgiving to you mate Wink

Sue

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1594 - Nov 27^th, 2013 at 11:05pm

Hey Sue,

Thanks for the update and happy Thanksgiving to you too... Glad to hear you're pain free. You've got some good data points on your 25(OH)D response to vitamin D3 dose.

A 25(OH)D serum concentration of 337 nmol/L is a little high, but still quite safe as it's well below the lower threshold for vitamin D3 intoxication at 500 nmol/L.

212 nmol/L is the target serum concentration for your 25(OH)D... We have the most information from CH'ers taking a maintenance dose of 10,000 IU/day vitamin D3 and that dose should keep you at or near the target 25(OH)D serum concentration. You can confirm that with your next 25(OH)D lab test the end of December.

When you schedule your 25(OH)D lab test, ask for the lab tests for total serum calcium and PTH. That way you'll have all the important bio parameters you'll need to get your neurologist on board with the anti-inflammatory regimen.

Regarding the achey leg and wicked charlie horse... I don't recall any reports of cramps from posts here at CH.com or from the online survey... at least not attributed to vitamin D3. That doesn't mean there isn't a connection. For now you've added another data point to the anti-inflammatory regimen database.

How much calcium are you taking? Magnesium? How about table salt or potassium? Leg cramps are strange things... and there's no clear cause unless you've been doing some serious physical activity... That said, it doesn't take much of a shift in blood chemistry to put things a little out of balance. Some Gatorade might just help.

If you're taking less than 400 mg/day magnesium increase the dose to 400 mg/day for a few days... If the cramps continue, bump the magnesium to 500 mg/day. Try to get magnesium malate, magnesium glycinate or magnesium citrate.

These salts of magnesium have better bio-availability and are less likely to cause osmotic diarrhea.

Hope this helps...

Take care and please keep us posted

V/R, Batch

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thierry CH.com Alumnus Offline I Love CH.com! Posts: 406 Galway, Ireland Gender:	Re: 123 Days PF And I Think I know Why Reply #1595 - Nov 28^th, 2013 at 4:48am hi Batch, I hope you are well, of these 3 types of magnesium: magnesium malate, magnesium glycinate and magnesium citrate, can you put them in the right order as regards which are the best ones in the regimen please. I currently use Magnesium citrate. Thanks
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Imitrex4Breakfast CH.com Veteran Offline Posts: 200 Kentuckiana Gender:	Re: 123 Days PF And I Think I know Why Reply #1596 - Nov 28^th, 2013 at 8:54am LOL~ Mag Citrate is a powerful laxative! Stay near a toilet for goodness sakes !!
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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1597 - Nov 28^th, 2013 at 12:34pm

Hey Thierry,

The three salts of magnesium (magnesium malate, magnesium glycinate and magnesium citrate,) are in the order of preference.

Henry Lahore, the Vitamin D3 Jedi Master at VitaminDWiki has compiled some fascinating information on magnesium supplements and dosing. Read through the following page and you'll have the latest well-rounded information on the type and optimum dose of magnesium supplements...

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

or

Read each article/study carefully as you'll find opinions differ on the type of magnesium and how much to take...

One of the interesting factoids you'll find on this web page follows:

"Magnesium is required to transform Vitamin D from its storage form to its active form. That means if you take the extremely high doses that allopathic doctors are now recommending you can plummet into magnesium deficiency and not know what the heck is happening."

This is why I asked Sue how much magnesium she's taking...

Comment: "Extremely high doses of vitamin D3" is a relative term... To the bureaucrats at the Institute of Medicine at NIH/HHS, anything over 400 IU/day is extreme... While patients suffering from RRMS will say 50,000 IU/day vitamin D3 is excessive if taken over a month...

Take care and please keep us posted.

V/R, Batch

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Re: 123 Days PF And I Think I know Why
Reply #1598 - Nov 28^th, 2013 at 4:01pm

Thanks Batch!!! You are so awesome!

Not taking any Calcium supplements as yet. As far as the other vitamins & etc. noted in your regimen, I'm dedicated to taking the "noted" amounts said in your regimen excluding the Calcium at the moment.

With my next appointment for the 25(OH)D test, I will try to ask for total serum calcium and PTH.
What is PTH? lol I probably can look through your notes and find this out.. (excuse my ignorance

)

As far as the wicked charlie horse! well... hopefully it cures it self, I will keep in mind of increasing the mag. No I've had no serious physical activity, wish I did!

Thanks for the great suggestions and always your support,

Hopefully, all will be well until the new year, Until then, Take Care, hope you and your family enjoy your Thanksgiving,
All the best

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1599 - Nov 28^th, 2013 at 5:55pm

Sue,

Sorry about that... PTH is the parathyroid hormone... It works as a cataylist along with 1aOHase, an enzyme in the kidneys, to aid in the metabolism of 25(OH)D into 1,25(OH)2D3, the active metabolite and hormonal form of vitamin D3.

Too much PTH is usually an indication of a parathyroid problem (hyperparathyroidism) and too much PTH leads to an over production of 1,25(OH)2D3... That, in turn, pulls too much calcium from the gut and bones so leads to hypercalcaemia... too much calcium in the blood... a.k.a. vitamin D3 intoxication...

Your total calcium and PTH should be normal... i.e., within their normal reference ranges, and that should help calm any possible angst on the part of your neurologist over taking 10,000 IU/day vitamin D3.

For what it's worth, enzyme names always end in "ase" and they're named for what they do, the compound they work on or the end product they create...

In this case 1aOHase adds an [OH] radical to the 1st carbon on the 25-Hydroxyvitamin D a.k.a. 25(OH)D molecule.... which is vitamin D3 with an [OH] radical attached to the 25th carbon in the vitamin D3 molecule.

Another enzyme most people are familiar with is lactase. Lactase is essential to the complete digestion of whole milk. Lactase breaks down lactose, a simple sugar which gives milk its sweetness.

Many adults lack this enzyme so become what's called lactose intolerant... i.e. drink whole milk and come down with a tummy ache and or lots of gas...

Back to the anti-inflammatory regimen. I've spoken with a number of vitamin D3 experts and Jedi Masters of vitamin D3 therapy... They all say magnesium is an essential part of vitamin D3 repletion therapy and to take as much as you can tolerate without getting loose as a goose.

Calcium, zinc and boron are also important parts of the anti-inflammatory regimen as is vitamin A (retinol). Vitamin D3's genetic expression capacity requires retinol and there are some experts that claim we need vitamin K2 when taking vitamin D3 at the doses needed to prevent cluster headache.

Hope this helps...

Take care,

V/R, Batch

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