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123 Days PF And I Think I know Why (Read 444495 times)
slacker032
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Re: 123 Days PF And I Think I know Why
Reply #1900 - Jun 30th, 2014 at 10:03pm
 
Hey Batch,

Just wanted to give you an update and ask for further advice. 

My current regimen consists of:

Omega-3 Fish Oil - 2000 mg
D3 - 15,000 IU (dissolved before bedtime)
Magnesium Citrate - 400 mg
Centrum Silver for Men
Zinc Oxide - 10 mg
K2 Complex
B-50 Complex (90-day regimen)
Vitamin C - 1000 mg 4 times per day

I also used to take Calcium Citrate 500 mg but when my clusters weren't responding to the regimen, you advised me to increase my Magnesium Citrate to 600 mg and told me to stop taking the Calcium Citrate for awhile. 

My cycle ended at the end of May and I've been pretty much pain-free since then although I've been getting some shadows lately. 

Would you recommend that I add Calcium Citrate (maybe 250 mg?) back into my regimen?  I've already decreased my Magnesium Citrate intake back to 400 mg.


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Batch
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Re: 123 Days PF And I Think I know Why
Reply #1901 - Jun 30th, 2014 at 11:09pm
 
Hey Slacker,

Thanks for the update.  15,000 IU/day vitamin D3 should result in an average 25(OH)D response around 100 ng/mL.  That should be sufficient to prevent any CH symptoms unless there are competing consumers of 25(OH)D...

A lab test for 25(OH)D would be helpful in determining the optimum vitamin D3 dose at this point.  Call your PCP and see if he can schedule a lab test for you.

The Centrum Silver you're taking should have around 220 mg calcium per serving.  Check the label.  If this is correct, you're getting adequate supplemental calcium.

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 #1902 - Jun 30th, 2014 at 11:42pm
 
Batch,

The Centrum Silver contains 210 mg of Calcium so I'm assuming that's fine. 

My last 25(OH)D test was on 4/15 which came out to 111.0 ng/ML.  I'll be taking another test shortly and will post the results.

As for the B-50 complex, after the 90 days is up, in which situation would you recommend another 90-day regimen?
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Re: 123 Days PF And I Think I know Why
Reply #1903 - Jul 2nd, 2014 at 3:48pm
 
Hey Slacker,

Thanks for the update.  At this point, the 3-month course of vitamin B 50 is a single shot deal...  I've finished my 3-month course of vitamin B 50 as well.  I take the Kirkland brand Mature Multi.  It contains all the B vitamins at RDA which should be sufficient to prevent any deficiencies. 

When you finish your Centrum Silver, you might want to investigate an alternative mature multivitamin-mineral formulation that also contains the B vitamins.

Thanks again for the update and please keep us posted.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1904 - Jul 2nd, 2014 at 3:57pm
 
Gotcha.  Is this the Kirkland multivitamin you're recommending?

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Re: 123 Days PF And I Think I know Why
Reply #1905 - Jul 3rd, 2014 at 8:46am
 
Hi slacker,
          yes that's the KirKland multi that batch recommended,  ive swapped to that as well.

cheers
colin
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Re: 123 Days PF And I Think I know Why
Reply #1906 - Jul 3rd, 2014 at 1:43pm
 
Got it.  Thank you.
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Re: 123 Days PF And I Think I know Why
Reply #1907 - Jul 4th, 2014 at 6:45pm
 
I'm sorry guys, I think I missed something...what is this B-50 complex thingy?  Happy 4th, by the way.

-Andy
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Re: 123 Days PF And I Think I know Why
Reply #1908 - Jul 4th, 2014 at 8:05pm
 
TheAndyT wrote on Jul 4th, 2014 at 6:45pm:
I'm sorry guys, I think I missed something...what is this B-50 complex thingy?  Happy 4th, by the way.

-Andy


Here was Batch's response to me re: B-50:

Batch wrote on Apr 18th, 2014 at 1:47am:
Hey Slacker,

You're not alone.  I know what you're going through... It's happened to me and there are others reporting a similar recurrence of their CH over the last month or so...

I suspect the culprit is a high pollen count that's triggered an allergic response that's consuming the active vitamin D3 metabolite, 1,25(OH)2D3 at rates that leave too little to prevent CH.

I had a few days of burn through hits in mid March when the Alder pollen was coating my pickup like someone had dusted it with a bag of Portland cement.  The burn through hits started again in early April when the Maple pollen was turning my pickup yellow...

I've tried a few things that appear to have been effective in getting me back to a PF state...  The first is increasing the magnesium intake to 600 to 800 mg/day.  Magnesium is essential in the enzymatic processes that metabolize 25(OH)D to the active metabolite 1,25(OH)2D3. 

I also started the three month course of vitamin B 50 complex that Dr. Stasha Gominak suggests to her headache patients taking a similar vitamin D3 regimen. 

She's been prescribing this regimen for over six years and has the clinical data to back it up...  She added vitamin B 50 when some of her patients reported the basic regimen wasn't as effective as it had been in the past.  It worked...

B 50 is essentially a formulation of 50 mg each of the seven B vitamins and it should take care of any vitamin B deficiencies. 

Along with the B 50, I also started taking 1000 mg vitamin C two to three times a day every two hours.  The half life of vitamin C is 30 minutes after reaching Cmax.

Finally, I started popping 3 to 5 of the 5,000 IU vitamin D3 liquid soft gel capsules between my back teeth and holding the contents between my cheek and gums and kept it there for 20 minutes without swallowing.  I did this prior to bed at night as most of my burn through hits were coming while sleeping...

It takes a couple days for the 25(OH)D to build, but the vitamin D3 serum concentration goes up rapidly as it bypasses the lower GI tract and passes directly into the bloodstream through the cheek and gums.

The net effect was very short aborts when using oxygen therapy with hyperventilation and a pain free response by the second to third day after starting this method of taking vitamin D3.

You should be able to improve the effectiveness of your oxygen therapy and shorten the abort times by hyperventilating with room air for 30 seconds then inhaling a lungful of oxygen and holding it for 30 seconds...  Repeating this 4 to 5 times should be sufficient to abort most of your CH...

The important thing is the breathing technique while hyperventilating...  This breathing technique is called hyperventilating at forced vital capacity tidal volumes... 

You do this by standing with your jaw dropped like saying the work "Haw." Standing gives your diaphragm full range of motion and this increases lung ventilation.

Start this breathing technique by exhaling forcibly until it feels like your lungs are empty... they're not.  At that point do an abdominal crunch like doing situps and hold the squeeze it until your exhaled breath makes a wheezing sound for a couple seconds...  then through your shoulders back, head up and chest out and inhale rapidly using your diaphragm.

You should be doing 10 complete respiration cycles every 30 seconds while hyperventilating with room air...  Keep repeating this sequence until the pain stops completely.

If you're doing this properly, you should feel the symptoms of paresthesia when you inhale the 100% oxygen...  A very slight tingling/prickling of the face, lips, fingertips and chest area.  These sensations will build for 10 to 15 seconds after inhaling and holding the oxygen then dissipate until they're almost gone after 30 seconds when your restart the complete sequence again.

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 #1909 - Jul 4th, 2014 at 8:33pm
 
Pete, you always...and I repeat ALWAYS amaze me with your descriptive writings....so I have one question for you after reading all that....what kind of pickup do you drive? Cheesy

Happy 4th to you and Joyce, pal. Wink
Your friend,
-Gregg in Las Vegas
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Re: 123 Days PF And I Think I know Why
Reply #1910 - Jul 5th, 2014 at 9:21pm
 
Slacker, thank you. Okay, so what are the daily doses for the B50 and for how long etc...    Which one do you recommend to buy?
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Re: 123 Days PF And I Think I know Why
Reply #1911 - Jul 5th, 2014 at 9:34pm
 
Gregg,

It's a 2000 S10 Stepside...

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I've driven Fords all my life, but got in a pinch and couldn't find a good used F-150 to my liking while the motor in my '91 SuperCoupe was going through a Stage 2 rebuild.  The rebuild included ported heads, high-performance pistons with ceramic piston head coatings, a larger blower, taller cams and a larger intercooler...  The engine builder offered me a very good deal on the S10... so I took it.

Hope you're enjoying a wonderful 4th of July weekend...

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1912 - Jul 10th, 2014 at 2:10am
 
well, here we go,
weened off verapamil 2 months ago
am on the full regime, and also recently had a couple of months on the vit b, even though I was mid range on my blood test.  last vit d test,  220 nmol after I titrated up because of heavy shadows,(January)  ( shadows disappeared after 2 weeks then) between then and now, id get occasional shadows, and have had two out of the blue kip5 with no lead up !!  gone as quick as they came !!!
So,  2 weeks ago, felt something happening, silly little tingles, like electric shocks, followed by alternating side shadows,  then a week of just feeling flushed and waking up with a heavy shadow that was quelled with a double shot coffee ( yum).  currently, still shadowing, I slam a cold redbull down every other day which still works great.
Conclusion...  the beast has been lurking now for 3 weeks, previously, i'de get two weeks of the above, then Wammo a full on cycle !   im still nervous about everything, But, I wont speak to soon,  I think ( hoping)  that, because of the vit d regime, its holding it at bay !!!
Its been 3 months since I had bloods done, but im pretty confident I'd still be hovering around 200-210 nmol,  so im going to up my vit d to 20,000 for a week and see if that nails the shadows, then go straight in for another blood test.
gee, I might not be one of those that get totally pain free on the regime, but if im right and this cycle runs its course as it is now,  I'll be one very happy camper !!!
  " I hear him a knocking,  But this time ive changed the lock and I'm bolting the door shut " LOL
regards
colin
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Re: 123 Days PF And I Think I know Why
Reply #1913 - Jul 10th, 2014 at 7:51pm
 
Colin,

A 25(OH)D serum concentration of 200 to 220 nmol/L may not be sufficient to prevent CH under some circumstances...  Any underlying condition that activates your immune systhem or that causes inflammation can suck up 25(OH)D and 1,25(OH)2D3, the active hormonal metabolite of vitamin D3 as well as the enzymes responsible for vitamin D3 metabolism... 

Make sure you're getting at least 400 mg/day magnesium and don't be afraid to up your maintenance dose of vitamin D3...  Toss in a 50,000 IU loading dose of vitamin D3 and watch what happens to the shadows... They should go away...  That will be the best indication your vitamin D3 maintenance dose was too low.

Tale care and please keep us posted.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1914 - Jul 11th, 2014 at 1:58am
 
thanks for your reply batch,  yes Im definitely getting 400 mg of magnesium and the rest of the other co-factors.
I did read from someone else here that they were having to take more than the 10,000 per day to maintain there levels at a pain free state.
so im lifting my d3 to 20,000 per day for a week, started last nite, but I might load up with 50,000 tonight.
if the shadows clear by weeks end, i'll get bloods done immediately to see where my level has to be.
ive kept my levels as best I can at around 190-220, but maybe I have to be slightly higher, or somethings drained my levels since my last test 3 months ago.
Im happy to sit at a higher level if that's whats required to keep me pain free, as long as my calcium level/ score sits in the right range.
I'll keep you informed with my results
regards
colin
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Re: 123 Days PF And I Think I know Why
Reply #1915 - Jul 11th, 2014 at 2:18am
 
Hi Colin, I recently had a return of shadows and even had a KIP7 one night which woke me up, i had to take a Zomig as the oxygen only reduced the pain a little bit. I then took 50000iu D3 for 2 days, then 40000 for a further 2 days (along with the rest of the regimen) and I am now taking 20000iu D3 daily and will continue to do so for another week or so. The beast and the shadows went away after taking the 50000 and 40000 iu D3. Maybe that would work for you too, I hope so.
All the best
Smiley
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Re: 123 Days PF And I Think I know Why
Reply #1916 - Jul 11th, 2014 at 7:44pm
 
Hi Thierry,
                yes, that's what im doing as well now. I took 20,000 the first nite, then 50,000 last nite, the shadows seem to have eased. I'll take 20,000 for the next week, then go in and get bloods done.
An interesting point that batch bought up was that some may need a higher d3 count to stay pain free, and some may need a higher maintenance dose than 10,000 daily to remain pain free. Im sure I read somewhere here that someone was taking a maintenance dose of 20,000.
when I received my blood test in febuary ( 230 nmol ) after I titrated up from 200 nmol because of shadows in January, I actually got a bit paranoid about it being so high after shadows disappeared, so I stopped taking it for 4 or 5 days to drop my level. Maybe 230 nmol is where I need to be !.   I t was interesting that it only took one week of taking 20,000 per day and a one of 50,000 loading, to go from 200 nmol to 230 nmol.  a simple test in a week will give me a better idea.
regards
colin
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Re: 123 Days PF And I Think I know Why
Reply #1917 - Jul 12th, 2014 at 12:59pm
 
Batch wrote on Jul 2nd, 2014 at 3:48pm:
Hey Slacker,

Thanks for the update.  At this point, the 3-month course of vitamin B 50 is a single shot deal...  I've finished my 3-month course of vitamin B 50 as well.  I take the Kirkland brand Mature Multi.  It contains all the B vitamins at RDA which should be sufficient to prevent any deficiencies. 

When you finish your Centrum Silver, you might want to investigate an alternative mature multivitamin-mineral formulation that also contains the B vitamins.

Thanks again for the update and please keep us posted.

V/R, Batch


Hey Batch,

I was comparing the contents in the Kirkland Mature Multi and the Centrum Silver for Men.  Is there a difference in the B vitamin contents between the two?  I didn't notice a difference.

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Re: 123 Days PF And I Think I know Why
Reply #1918 - Jul 12th, 2014 at 1:17pm
 
Slacker,

Good question...  The formulations are roughly the same WRT the B vitamins...  My rationale for selecting the Mature Multi was primarily to pick up as many of the vitamin D3 cofactors as possible in a single capsule and cost.

The Kirkland Mature Multi provides 400 tablets at roughly half the price of 250 tablets of Centrum Silver for Men +50.

I still add 400 mg/day magnesium and the Super K with K2 complex.

Hope this helps...

Take care,

V/R, Batch
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« Last Edit: Jul 12th, 2014 at 1:21pm by Batch »  

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Re: 123 Days PF And I Think I know Why
Reply #1919 - Jul 12th, 2014 at 1:19pm
 
Batch wrote on Jul 12th, 2014 at 1:17pm:
Slacker,

Good question...  The formulations are roughly the same WRT the B vitamins...  My rationale for selecting the Mature Multi was primarily to pick up as many of the vitamin D3 cofactors as possible in a single capsule and cost.

The Kirkland Mature Multi costs roughly half as much as the Centrum Silver for Men +50.

I still add 400 mg/day magnesium and the Super K with K2 complex.

Hope this helps...

Take care,

V/R, Batch


Thanks Batch.

I was asking because I'm about to finish my 90-day B-50 regimen and have a ton of Centrum Silver left. So I was wondering if it would be worth it to ditch the Centrum and buy some of the Kirkland Mature Multi.
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Re: 123 Days PF And I Think I know Why
Reply #1920 - Jul 12th, 2014 at 1:23pm
 
There's nothing wrong with the Centrum Silver...  I took it for years...
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Re: 123 Days PF And I Think I know Why
Reply #1921 - Jul 12th, 2014 at 2:15pm
 
Gotcha. Thanks Batch.
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Re: 123 Days PF And I Think I know Why
Reply #1922 - Jul 13th, 2014 at 2:28pm
 
Hello again. I am an episodic sufferer whose cycles come every two summers like clockwork and last for 4-6 weeks. I have had two cycles in my lifetime (31 years old) and am now in my third. During the last cycle, I discovered the anti-inflammatory regimen and had considerable success with ending my cycle early. Sadly, I stopped the regimen after a few PF months, and now the beast is back this summer.

I have been back on the D3 regimen for three weeks (the past three days I have added the Vitamin K, Vitamin A, B-50, and added Magnesium) with some considerable results. I am almost always PF unless I drink alcohol, which is my main and seemingly only trigger.

Unfortunately, I must admit that I live a lifestyle in which alcohol is prevalent, and I don't always abstain. Thus, some pretty bad KIP 8-10s on those nights, usually 15 minutes after consuming my last drink and not during the drinking itself.

Anyways, I have not had tests done yet but will do so soon. But I am pretty sure I am D3 deficient, even though I live in a sunny climate and spend a good amount of time outside.

This past week I had a bad summer cold/sinusitis as well, and so I upped my D3 to anywhere between 20,000 and 40,000 ius a day, depending on how hard I was shadowing.   

My question is pretty simple, and I apologize if it has been answered somewhere already. Why would my body get D3 deficient with such precise timing? That is, why do I get D3 deficient every two summers EXACTLY?

I can't thank you enough, Batch, for all of your persistent research efforts and clarifying explanations, which have helped me and many people like me.
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Re: 123 Days PF And I Think I know Why
Reply #1923 - Jul 13th, 2014 at 10:02pm
 
Haste,

Thanks for the update and good question.  I'm sorry you missed my posts suggesting that episodic CH'ers are far better off staying on this regimen year round... 

Chronic CH'ers don't really have any choice...  a week to 10 days without vitamin D3 and the beast is back... 

Episodic CH'ers are a slightly different story...  It is possible to come off the anti-inflammatory regimen when the cycle has ended as long as their cycles are relatively well established...  and they restart this regimen with loading doses at least a month prior to the usual start date. 

It's important to remember the half-life of 25(OH)D is around two weeks...  If your 25(OH)D serum concentration was around 80 ng/mL when you stopped taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3... it would be at 40 ng/mL two weeks later... and down around 20 ng/mL a month after stopping the vitamin D3...

That said, this practice is still a crap shoot as the beast has ways of loading the dice in its favor...  When that happens you crap out and the beast wins...

The best practice for episodic CH'ers is to stay on this regimen year round.  That way when the next cycle comes around, it's a non-event.

Now to your question.  Episodic CH'ers fall victim to the body clock function controlled triggering mechanism that starts episodic CH cycles.  It's interesting to note that several episodic CH'ers have reported very low 25(OH)D serum concentrations throughout their remission periods.

This suggests a very interesting relationship between a vitamin D3 deficiency and the body clock function that triggers the start of an episodic cycle.   

If the 25(OH)D serum concentration is below 60 ng/mL when the alarm goes off... the episodic cycle starts... 

However, as reported by many episodic CH'ers who have stayed on this regimen year round maintaining an average 25(OH)D serum concentration around 80 ng/mL...  their body clock alarm may be going off but nothing happens...  they just continue to enjoy delightful pain free sleep...

At this point it's not clear if a 25(OH)D serum concentration around 80 ng/mL interrupts or inhibits the body clock function that triggers the start of an episodic cycle... or it interrupts another down stream function in the pathogenesis of an episodic CH cycle after the alarm has gone off...

Being an old Navy fighter pilot with CCH  and not a molecular biologist or immunologist...  it makes little difference to me where the interruption occurs that prevents CH...  as long as the anti-inflammatory regimen prevents CH...  That's all that really matters... 

A raw efficacy of 83% for the anti-inflammatory regimen in preventing CH beats the house odds at the crap and black jack tables by a big margin...

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 #1924 - Jul 17th, 2014 at 8:17pm
 
Hey everyone checking back in. Yesterday was one month pain free. I am waiting on my second results for my D3 test.They should be back any day now.

Batch thanks again for everything. There are a few things I learned this time that I have never stopped to take notice of. There are a lot of people who do not understand the pain we are in BUT they are more than willing to do whatever they can to help ease that pain. From the older "country" man at the welding store who had no issue helping me get oxygen and the regulator and wanting to know more about our headaches to the kind pharmacist at Target who opened up the pharmacy, TWICE,  just so I could get my pills to everyone here on this board. When you see the good in people it helps get through the pain.

I am not sure if it is the batch or end of my cycle (it was due to end) but whatever it is I am glad to once again have my life back. It is amazing to run again, climb back on my motorcycle again, be intimate with my wife again and play outside with my sons again. WONDERFUL.

Batch we did not get to fish up in AK. We went up to sight see and show our sons where the Mrs and I met 23 years ago. I miss that place a lot.

You all take care and I will be back soon to post my next D3 results. I will post all of them I take.

Thanks again all of you. 

I forgot to mention I am on a maintenance dose of 15000IU of D3 and 2400 Fish oil with the rest of the "batch" I might phase out the magnesium and B-50 as I believe my multi-vitamin covers them. I will stay on the D3 and Fish oil though I have no intention of getting off of those again.
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