Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Pages: 1 ... 38 39 40 41 42 ... 107
Send Topic Print
123 Days PF And I Think I know Why (Read 441282 times)
SMO1958
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 1
Re: 123 Days PF And I Think I know Why
Reply #975 - Aug 24th, 2012 at 6:13am
 
Hi, Im Adams Mum. I have been here before but not for sometime.  Adam is now 20 and has CH since 15.  Adam's cycle is usually Oct-March but the beast has hit early this year in August.  Adam is currently on the Vit D3 10,000 with Omega 3 3 capsules 3000 and is only getting shadows at the moment. I am waiting for the calcium citrate with mag and boron and a seperate zinc tablet.  So far so good. He can abort shadows quickly with 15ltr 02.  I would like to thank Batch very much for all his hard work and wish all CH sufferers PF days. Thank you. Cheesy
Back to top
  
 
IP Logged
 
Brooke
CH.com Junior
**
Offline


:)


Posts: 27
Re: 123 Days PF And I Think I know Why
Reply #976 - Aug 24th, 2012 at 12:12pm
 
STILL PF!!!!!!!!!!!!
Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3704
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #977 - Aug 24th, 2012 at 2:56pm
 
Hey Joseph,

Good question.  Several studies have indicated serum vitamin D3 and 25(OH)D levels start rising within a few hours after taking oral vitamin D3.  The final metabolite and hormone, 1,25(OH)2D3, (Calcitriol), takes a little longer. 

Accordingly, taking the complete regimen in the morning with the lemonade would appear optimum to have the highest possible concentration of all three during the peak headache hours of 8 pm through 6 am.

There's also no problem with splitting the vitamin D3 dose taking half in the morning and half 12 hours later.

Given your low starting serum concentration of 25(OH)D, I'd take 10,000 IU vitamin D3 in the morning and 10,000 IU 12 hours later as long as you're tolerating this regimen.  Taking a 50,000 IU loading dose once a week will also speed up the process of building 25(OH)D levels a lot faster.

The following chart illustrates the increase in rate of response between 10,000 IU/day vitamin D3 and 20,000 IU/day vitamin D3 (dashed line):

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

A starting serum concentration of 25(OH)D at 10 ng/mL will shift these response curves down and that would appear to add at least a week to the time required to reach 60 ng/mL at the starting concentration used in this chart.

The really good news is the lower the starting 25(OH)D serum concentration, the faster and higher the response to vitamin D3 dose.

Assuming an average response rate, your 25(OH)D serum concentration will take 30 days to reach 60 ng/mL at 10,000 IU/day vitamin D3 and two weeks at 20,000 IU/day.

A 50,000 IU loading dose once a week will cut two to three days off the time to reach 60 ng/mL at 20,000 IU/day vitamin D3.  Again... these are average response times and there are several factors that can mediate the response rate up or down.

Hope this answers your question.

Take care and please keep us posted.

Adam's Mum, thanks for the initial update...  It's good to hear Adam is starting to respond to the anti-inflammatory regimen...  Do keep us posted.

Brooke,  awesome news...  It's a great feeling isn't it...

Take care all...

V/R, Batch
Back to top
  

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
pete_batcheller  
IP Logged
 
Joseph BIG
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 21
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #978 - Aug 24th, 2012 at 4:36pm
 
Thank you very much Batch.

Into it... and I will update!!!

Joseph.
Back to top
  
 
IP Logged
 
Wayne
CH.com Old Timer
****
Offline


RedBull Rules!!


Posts: 368
Christchurch, New Zealand|
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #979 - Aug 25th, 2012 at 5:54pm
 
G'Day Folks

Haven't been around for a while. My Father passed away which necessitated my travelling to South Africa. Very sad.
On a positive note though I am still completely PF. Despite time zone changes, climate changes and terrible personal anguish I have had not so much as a shadow! I have stabilised the D3 at 5000iu/day for now which seems to be doing the trick, everything else constant as per Batch's rules. At the same time have cut back the Verapamil to 360mg/day.
I was amazed when I got back and tallyed up to find that I am now 40 days PF and going strong.
Cheers,

Wayne

BTW. I found it interesting that in South Africa, where 2000iu D3 capsules used to be available, the maximum allowable is now 500iu.
Back to top
  

A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort.
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3704
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #980 - Aug 25th, 2012 at 8:23pm
 
Hey Wayne,

Sorry to hear about your loss...  These things happen...  and none of us gets out of here alive...  So it's the good times to remember most that you spend with family and friends... and the quality of life you strive for that makes it all worth while.

Glad to hear you're still PF.  I found a good survey taken by the Point Institute that essentially says 2,000 to 5,000 IU/day vitamin D3 is a good average maintenance dose... and to get tested regularly for 25(OH)D...

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

As you can see the big US government technocrats at IOM low-ball the amount of vitamin D3 we need...  BTW, three of the members of the IOM that made these recommendations come from academia as tenured professors of biochemistry and nutrition...  The fourth is a full time government bureaucrat from DHHS...  None of the four have ever treated a patient or done any clinical work...

They all overlooked several Level A RCTs that clearly called for higher daily doses of vitamin D3...

Of course the data we've been collecting here at CH.com and from the online survey of the anti-inflammatory regimen points to the results of vitamin D3 intake that the dose that keeps your serum concentration of 25(OH)D ≥ 60 ng/mL or pain free which ever comes first is the maintenance dose we CH'ers need to take...

It's also becoming apparent from several CH'ers including myself, that certain times of the year, the maintenance dose we've taken for most of the year won't be sufficient and more vitamin D3/day will be needed. 

I suspect these periods might just coincide with higher concentrations of airborne allergens tree, grass and weed pollen as well as mold spores...  and the amount of time we spend outside breathing them. 

I've a chart that shows they all peak in late August and early September...

Moreover, at the doses of vitamin D3 we take and the serum 25(OH)D we maintain, taking in additional UV-B from sunlight appears to trigger a built-in regulating mechanism that down regulates the metabolism of vitamin D3 all the way to 1,25(OH)2D3...  so we may need additional vitamin D3 for this as well...

Take care,

V/R, Batch
Back to top
  

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
pete_batcheller  
IP Logged
 
Joseph BIG
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 21
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #981 - Aug 26th, 2012 at 8:37am
 
Hi Batch.

Some updates.

I am into the 5th regimen day.

In general, when the beast starts, I feel a strong pressure on my left side; Head, left eye, nose, around the upper jaw. I sweat like crazy and it is a hell of pain.

Somehow, in the past 2 days, I feel pressure in the nose area and above the teeth ONLY. AND...I do feel some relief.

From attacks every 2-3 hours a day, I get  2-3 attacks per 24 hours! Mostly when I am sleeping.

O2 helps, but right now, with this special "JUST NOSE AREA",  breathing out hot air from the lungs through the nose calm the situation.

I take my regimen in the morning.

My beast started on Jun/26/2012 and today is exactly two months. Usually it takes 2.5 to 3 months to "say goodbye".

What do you say Batch? Roll Eyes

Joseph.
Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3704
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #982 - Aug 26th, 2012 at 2:10pm
 
Hey Joseph,

Off hand, given your starting 25(OH)D serum concentration, I'd say your response to the anti-inflammatory regimen after five days is very promising...   The drop in frequency is good and reading between the lines... it appears the severity of your hits has dropped as well.

That said, as you're 60 to 80% through your "normal" CH cycle, the drop in frequency of your hits could very well be signalling an early end of cycle and not a response to this regimen.  That of course depends on how your cycles normally end...  with a bang or a whimper...

Being the optimist who sees the glass as being half full...  I'll venture this regimen is working...  so keep on trucking...  and don't change a thing...  One way or the other it looks like you could be completely PF in as little as two weeks... if not a little sooner.

Take care and please keep us posted.

V/R, Batch

Back to top
« Last Edit: Aug 26th, 2012 at 2:54pm 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
pete_batcheller  
IP Logged
 
Brew
CH.com Sponsor
CH.com Alumnus
***
Offline




Posts: 14163
Re: 123 Days PF And I Think I know Why
Reply #983 - Aug 26th, 2012 at 2:13pm
 
Batch wrote on Aug 26th, 2012 at 2:10pm:
Being the optimist who sees the glass as being half full... 

And being the pragmatist, I see room for more bourbon.
Back to top
  

"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3704
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #984 - Aug 31st, 2012 at 1:13pm
 
In case there was any doubt that vitamin D3 works...

Over 100 Vitamin D Intervention clinical trials were added in the first 7 months of 2012...

None for us CH'ers just yet...  but the link below should give you a warm fuzzy feeling about the anti-inflammatory regimen...

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

You can spend hours browsing it...

Then download the attached...  It says... by inference... we're on the right track taking vitamin D3 to control CH...

Take care,

V/R, Batch
Back to top
« Last Edit: Aug 31st, 2012 at 1:31pm by Batch »  
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (382 KB | 5 )

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
pete_batcheller  
IP Logged
 
Zeitgeist
CH.com Alumnus
***
Offline


Clustery szcmustery


Posts: 91
|Norway|
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #985 - Aug 31st, 2012 at 5:02pm
 
As you know, Batch, the D3 vs CH has not been the one sided battle I hoped it would be, although D3 must be declared the winner. But I can say one thing for sure:  After 14 full months with 5000+ I.U, mg, ca, zn etc every day, influenza and common cold just doesn't seem to bite. And that is radically new. Really.
Back to top
  

-zg
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3704
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #986 - Aug 31st, 2012 at 7:07pm
 
What was your last lab test for 25(OH)D?   If your serum 25(OH)D is below 60 ng/mL (150 nmol/L), I would jack up the vitamin D3 dose to 15,000 IU/day for a few weeks to see what happens... then drop back to 10,000 IU/day.

If you haven't added vitamin A at RDA (at least 3,500 IU/day)... give that a try.

Neither Joyce or I have had a cold or flu since starting this regimen in Oct/Dec 2010...  and we've had a house full of crouping, sneezing, runny-nose grand kids all over us on several occasions trying their darnedest to infect us...

Take care and please keep us posted.

V/R, Batch
Back to top
  

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
pete_batcheller  
IP Logged
 
Zeitgeist
CH.com Alumnus
***
Offline


Clustery szcmustery


Posts: 91
|Norway|
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #987 - Aug 31st, 2012 at 10:29pm
 
I haven't tested ior 25(OH)D in as while, but the latest (jan) was  +200 (nmol/L = +73ng/L )

I belive my current 25(OH)D-level is somewhere between 200 and 250 nmol/L.  For the time being, I am CH free. Vitamin A is well covered by food.
Back to top
  

-zg
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3704
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #988 - Aug 31st, 2012 at 11:21pm
 
You're clearly in the 25(OH)D green zone...  Sorry...  I misunderstood your post and thought you were having a burn through...

Here's to healthy diets...

Take care,

V/R, Batch
Back to top
  

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
pete_batcheller  
IP Logged
 
Mike NZ
CH.com Hall of Famer
*****
Offline


Oxygen rocks! D3 too!


Posts: 3785
Auckland, New Zealand
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #989 - Sep 1st, 2012 at 12:05am
 
Batch wrote on Aug 31st, 2012 at 7:07pm:
Neither Joyce or I have had a cold or flu since starting this regimen in Oct/Dec 2010...  and we've had a house full of crouping, sneezing, runny-nose grand kids all over us on several occasions trying their darnedest to infect us...


I too have escaped all the cold and flu bugs going around, especially over the last few months here with all the winter bugs around, with lots of people at work catching them, plus flying twice a week too. Normally I get every bug going.

Maybe there is more to this vitamin D3 than just CHs?
Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3704
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #990 - Sep 1st, 2012 at 5:11am
 
Mike,

There sure is...  a lot more...

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

Take care,

V/R, Batch
Back to top
  

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
pete_batcheller  
IP Logged
 
AubanBird
CH.com Old Timer
****
Offline


I Love CH.com!


Posts: 250
everywhere...
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #991 - Sep 1st, 2012 at 5:57am
 
when i first started the D3 regimine, i had been getting hit on average 2-3 times a day for a couple weeks and would then have a week or two rest.  before that, the breaks were a lot longer in between episodes, which were usually less than a month long.  the D3 pretty much stopped them in their tracks for a while.

i think i was going chronic back then.  the final transition into chronic happened while i was deployed.  i think the fact that i didtn have a day/night schedule for half a year played a part in that.  while i was in iraq though, the D3 regimine became less and less effective.  it still helped a lot, but i was getting 4-5 hits a day at around kip 3-6.  a few times our patrols would last a lot longer than expected, and i would miss a few day or two of D3.  when i got back from those missions and tried to sleep, i would wake up with a kip 8-10.  after i got back, the frequency juump to about 8 hits a day, with the first nightly hit being the strongest.  it wasnt untill i had gone two months without sleeping for more than 30-45 minutes at a time that it finaly caught up with me.  one morning i wouldnt wake up, and my wife beat on my chest and slapped me in the face, trying to wake me up.  all the way to the emergency room.  thats when they scheduled me to see Dr Finkle, a prominant headache specialist here in NC.  he prescribed me the "chronic coctail".

i am on 900 mg of lithium and 480mg of verapamil now, and they have pretty much sent the beast running.  i have had two headaches in the last 2 months.  i started backing down on the D3(was taking 15000iu) since my blood levels came back good on vitamin d.  still no headaches.

i dont know how relevant all that is, but i figured that i would share my experiences.  i could rarely take the rest of the supplements in iraq, so maybe that was why it started to lose its effectiveness.  maybe it was the 60+ hour long patrols where i was literaly chewing on the buttstock of my rifle to stay awake.  maybe it was just because the beast was morphing again.  who knows

if i ever switch back to being episodic, or if the headaches come back, ill boost the dosage back up and see what happens.
Back to top
« Last Edit: Sep 1st, 2012 at 5:59am by AubanBird »  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3704
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #992 - Sep 1st, 2012 at 3:33pm
 
Bird,

First off...  Thank you for your service...  Thank you also for the detailed update...

There was a time or two when I flew combat missions with a hangover headache...   Usually the result of an early morning Alert-5 launch after pulling out of a port call where we overstressed on too much alcohol...  It wasn't pleasant... and the old pilot's adage of 24 hours bottle to throttle ate away at me the entire time... and for days to follow...

I can't imagine what it must have been like going on patrol and getting hammered with CH, when my entire focus would have been to get the bad guys... and come back in one piece, no holes and nothing hung...  My hat's off to you my friend...  That's above and beyond the call to duty in my book.

I've been seeing a handful of cases where CH'ers like you, who had an initial favorable response to the vitamin D3 regimen started having "burn through" hits...  Most of them reported spending more time outside in direct sunlight.

This phenomenon appears to be related to the body's natural control mechanisms that prevent vitamin D3 overdose from cutaneous production and continued metabolism as a result of extended exposure to sunlight. 

What appears to be happening with CH'ers taking oral vitamin D3 at the doses we take, and who would normally maintain a serum concentration of 25(OH)D in the green zone (60 to 110 ng/mL), is that the control mechanism cuts in and significantly alters vitamin D3 metabolism by making an inactive metabolite that's pumped over the side in urine... instead of making the active metabolite and hormone, 1,25(OH)2D3.

This theory is contrary to the conventional wisdom that says oral vitamin D3 and cutaneous vitamin D3 produced from exposure to the UVB in sunlight are additive...

I've been having a similar experience with this phenomenon this summer.  The normal intake of 10,000 IU/day, calcium and all the cofactors wasn't hacking it... 

I could feel the tell-tail symptoms of an approaching hit so started increasing the vitamin D3 in 5,000 IU/day increments.

In less than a week, I was up to 30,000 IU/day vitamin D3 in order to remain PF...

Unfortunately it's going to take a dedicated study to verify my theory with tests for 1,25(OH)2D3, PTH and some other enzymes...  The test for 25(OH)D will be insufficient as the serum concentration of this metabolite is likely still in the green zone and it's entirely possible the control mechanism is cutting in to prevent it's metabolism to the active metabolite, 1,25(OH)2D3.

I've alerted Dr. Robert Heaney, M.D. about this phenomenon.  Robert is professor of endocrinology at Creighton University School of Medicine... He is also one of the Jedi Masters of vitamin D3 therapy... I haven't had word back from him as yet...

I'm happy to hear the "chronic cocktail" helped...

What was your actual serum concentration of 25(OH)D?  For CH'ers to remain pain free of their CH...  the normal concentration is anywhere between 60 to 110 ng/mL.

Take care and again thank you for your service.

V/R, Batch
Back to top
« Last Edit: Sep 1st, 2012 at 3:36pm 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
pete_batcheller  
IP Logged
 
palm
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 8
Re: 123 Days PF And I Think I know Why
Reply #993 - Sep 2nd, 2012 at 6:13pm
 
Just a thought about the fish oil . . .

There is significant (but not yet FDA conclusive) scientific evidence that shows omega 3 (ie fish oil) can reduce cholesterol.

Lower cholesterol reduces blood pressure, which could in effect constrict blood vessels, resulting in less pressure on the trigeminal nerve. (vasoconstrictors like Cafergot work well for me)

I've been taking 1000mg fish oil daily before seeing this, and it doesn't seem to help. I guess I can up it to 3g as suggested in the OP. I already get plenty of sunlight down at the pool  Cool
Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3704
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #994 - Sep 2nd, 2012 at 8:14pm
 
Hey Palm,

They put me on 3000 mg/day Omega 3 Fish oil and 500 mg/day calcium to get my BP, total cholesterol, and lipids down shortly after starting on sirolimus, (rapamune), an immunosuppressant I was taking as part of an RCT at NIH in an attempt to reprogram my immune system to keep my retinas from rejecting my body. 

I also changed my diet to include more greens, less red meat adding more chicken and fish.  A little more exercise helped as well...

Long story made short... it all worked...  My BP, total cholesterol and lipids all dropped back into the green zone in less than a month... even while taking the sirolimus, which has a known side effect of elevating total cholesterol and lipids.   The alternative was to go on statins.  Neither my doctor or I wanted to do that...

There are a couple RCTs, one recently published in Korea, indicating Omega 3 Fish Oil increases vitamin D3 absorption and it also appears to increase its metabolism to 1,25(OH)2D3, the active metabolite and hormone.

Take care and please keep us posted.

V/R, Batch
Back to top
  

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
pete_batcheller  
IP Logged
 
palm
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 8
Re: 123 Days PF And I Think I know Why
Reply #995 - Sep 2nd, 2012 at 8:27pm
 
@Batch
I found that exercise has zero effect on my CH. I took up intense weight lifting for over a year, but with zero effect.

My cholesterol has always been borderline too high because of my high protein diet, but I eat a lot of tuna fish (also high in omega 3) in addition to the supplements.
Back to top
  
 
IP Logged
 
Joseph BIG
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 21
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #996 - Sep 4th, 2012 at 7:33am
 
Hi Batch.

Some updates as promised.

I am on my 12 regimen day.

I am happy to say that my beast intensity is close to KP 1 - to 3. I have like 1 to 2 attacks per day from almost 10-12 a day prior taking your regimen.

The attacks now are lighter...much much lighter...

I feel like my body tries to "take out" the beast = Now, my pain is above the left (jaw) teeth and sometimes in the nose, compared to a crazy pain through out my entire left (head) side before starting the regimen.

I am still not fully PF but had  2-3 nights with no pain at all. Smiley

Whether it is my ending cycle or...your regimen...I feel it is the regimen!  Wink

Batch, as you have so much knowledge about CH I like to ask you few questions if I may:

1) Why oxygen helps in terms of anatomy/body reaction? and why, especially on high pressure?

2) Why the Calcium Citrate is so important to take and not using d3 and omega3 only?

Thank you very much Batch.

I'll keep you posted.
God bless,
Joseph.


Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3704
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #997 - Sep 4th, 2012 at 4:11pm
 
Hey Joseph,

Thanks for the update...  Off hand, I'd say you're starting to respond to this regimen...

Good questions too... but my question for you is how much vitamin D3 are you taking daily? 

With a starting 25(OH)D serum concentration of 10 ng/mL, it could take as long as two months at an intake of 10,000 IU/day vitamin D3 to get your concentration of this vitamin D3 metabolite up to 60 ng/mL.  That's the lower threshold of the green zone (60-110 ng/mL) where CH'ers who respond to this regimen have a favorable response.

If you've been on the basic anti-inflammatory regimen at 10,000 IU/day vitamin D3 along with the 2000 mg/day Omega 3 Fish Oil, 500 mg/day calcium (the calcium citrate tablets formulated with the other basic cofactors: 80 mg/day magnesium, 10 mg/day zinc and boron) for 12 days, and you've had no problems, you may want to try like several other CH'ers have...  an increased dose of 20,000 IU/day vitamin D3 with a 50,000 IU loading dose once a week. 

As high a weekly dosing schedule as this sounds... 190,000 IU/week vitamin D3 is safe...  It's also well below the 350,000 IU/week (average of 50,000 IU/day) vitamin D3 you would need to take for at least 12 weeks to reach the lower threshold of vitamin D3 intoxication at 200 ng/mL 25(OH)D... This condition would be clinically indicated by serum and urine calcium concentrations above normal.

This increased dosing strategy will build 25(OH)D levels much faster and hopefully get you into the green zone with a more favorable response at a serum concentration of 60 to 110 ng/mL in less time.

When you've experienced a cessation of CH attacks or a significantly reduced frequency and severity of attacks for at least a week, you can throttle back to 10,000 IU/day vitamin D3 as a maintenance dose.

Keep the cofactors at the original dose.

As to your questions...

1.  The reason for the higher oxygen flow rates that support hyperventilation (25 to 45 liters/minute) is simple but likely not obvious unless you're a student of respiratory physiology.

Most neurologists and CH'ers assume it's the 100% oxygen inhaled resulting in an increased arterial partial pressure of oxygen above normal that aborts the cluster headache.

In fact, it's the increased arterial partial pressure of oxygen above normal AND a decrease in the arterial partial pressure of CO2 below normal that aborts CH faster and more reliably than the lower oxygen flow rates. 

Flow rates that support hyperventilation are also very safe...  There are a lot of old wives tales about people passing out at high oxygen flow rates...  For otherwise healthy people with CH, they're not true.

I've prayed to pass out during this method of oxygen therapy when I got to the oxygen late and the beast had a head start... it never happened... 

In five years using this method of oxygen therapy at an average of 3 times a day...  I've never passed out... nor have I seen reports of any other CH'ers having problems with higher flow rates...  I'm also 68 and still here...

Why is a lower partial pressure of CO2 important during oxygen therapy? 

You lower the arterial partial pressure of CO2 by hyperventilating...  breathing faster and deeper than needed.  In doing this, you're essentially blowing off CO2 faster than your body generates it through normal metabolism... 

This pushes your system into voluntary respiratory alkalosis...  In other words you've intentionally hyperventilated long enough to raise the alkalinity of arterial blood.

This accomplishes two other important physiological conditions.  Blowing off more CO2 than normal lowers the acid content of the blood making it more alkaline (a higher pH).  This stimulates the vasoconstriction needed to abort the CH. 

A higher pH also increases blood hemoglobin's affinity for oxygen to the point where it carries up to 11% more oxygen. This results in a super-oxygenated flow of blood to the brain further increasing vasoconstriction...

The net effect is faster and more reliable aborts with oxygen therapy.

A couple things happen when you reach respiratory alkalosis...  Most of us will experience the symptoms of paresthesia...  a very slight tingling or prickling of the fingertips, lips or back of the neck.  Some of us also experience a slight dizziness...  I lean against a wall if I get dizzy.

Both of these symptoms of respiratory alkalosis are very normal and strange as it may sound, they are your friend.  They tell you you're getting the fastest abort possible with oxygen therapy... 

Why too much CO2 (an elevated arterial partial pressure of CO2) makes oxygen therapy ineffective...

If you're like most of us, when the CH pain reaches 6 to 8 on the 10 point headache pain scale, you're unable to stand still.  Most of us do the CH 2-step or dance.  Some of us pace in circles or rock back and forth. 

This physical activity generates more CO2 and the body's response is to the elevated CO2 is to breath faster to keep CO2 levels in the normal range.  Too much CO2 also triggers vasodilation throughout the body to increase blood flow to the lungs.

Here's the kicker...  If your level of physical activity is greater than sitting motionless and you're doing the CH 2-step, pacing or just rocking back and forth...  You'll need a volume of lung ventilation equal to 25 liters/minute or higher (a minute volume of 25 liters or greater) just to maintain normal CO2 levels...

However, if you constrain your lung ventilation to a minute volume of 15 liters (a flow rate of 15 liters/minute) with a non-rebreathing oxygen mask... and you have any physical activity above being completely at rest, you'll be unable to cast off sufficient CO2 to maintain normal levels...  As a result, your arterial partial pressure of CO2 rises above normal and vasodilation increases.  That's the exact opposite of what you want to happen with oxygen therapy...

This triggers an uncontrollable urge to breath faster but as your respiration is now limited or constrained to 15 liters/minute flow rate by the regulator, you'll start feeling increased anxiety and possibly panic attacks... even though you're still breathing 100% oxygen...

Under these conditions, an abort with oxygen therapy may not be bpossible or the time to abort will be greater than 20 minutes...

I know that was a long-winded answer.  However, I've found that once CH'ers understand why oxygen flow rates that support hyperventilation are safe and far more effective with faster abort times than 15 liters/minute, they tend to have a much greater success rate aborting their CH with oxygen therapy.

2.  Why take Omega 3 Fish Oil, Calcium and the other cofactors: magnesium, zinc, vitamin K2, vitamin A and boron.

The simple answer is they're all needed to make vitamin D3 therapy more effective.

Aside from the well published cardiovascular benefits of Omega 3 Fish Oil and it's anti-inflammatory properties, recent studies have linked the intake of Omega 3 Fish Oil to increased production of 1,25(OH)2D3, the active vitamin D3 metabolite and hormone that appears to be effective as a CH preventative.

Calcium is essential any time we take vitamin D3.  The main reason is vitamin D3 pulls calcium from the gut and pushes it into the blood stream.  Under normal conditions, this excess calcium in the blood is passed into the bones to maintain and increase bone mineral density (BMD).  This process is tightly controlled by the parathyroid hormone to maintain serum calcium levels in a very narrow range.

If there is insufficient dietary calcium in the gut, vitamin D3 will take calcium from the bones...  Hence, a minimum intake of 500 mg/day calcium will ensure sufficient calcium for better BMD and good bone health.

Magnesium, zinc and boron aid in vitamin D3 metabolism in the liver and kidneys.

Vitamin K2 helps direct serum calcium to the bones.  It also helps prevent calcium plaque buildup in the arteries...

Vitamin A is the sleeper...  and likely a key enabler in the CH preventative role of vitamin D3...

The normal path of vitamin D3 metabolism that maintains calcium homeostasis starts in the liver where vitamin D3 (cholecalciferol) is metabolized into 25(OH)D (calcidiol), and from there to the kidneys where 25(OH)D is further metabolized to 1,25(OH)2D3, (calcitriol).

A number of studies indicate vitamin A (retinol) is essential for an alternate pathway for peripheral metabolism of 25(OH)D into the active metabolite 1,25(OH)2D3.  This takes place as needed when needed by affected cells  throughout the body. 

In this mode of metabolism, vitamin D3 acts as an autocrine signalling hormone unlocking genentic code within the cells DNA to produce whatever the cell needs to heal or reproduce itself.  This peripheral mode of vitamin D3 metabolism can only take place when 25(OH)D reaches affected cells in the presence of vitamin A.

Dr. Robert Heaney, M.D. uses the following example of peripheral vitamin D3 metabolism and genetic expression: 

A tuberculin bacillus lands on a cell within the lung's alveole and starts to infect it.  The cell says "I don't have the material to fight this bacillus...  but if I had some 25(OH)D and some vitamin A, I could use these two ingredients to make 1,25(OH)2D3 to unlock my genetic library for the recipe to make the appropriate tuberculosis anti-bodies..."

You can watch Dr. Heaney's presentation of Vitamin D: Nutrient, Not A Drug at the following link for a better explanation of this peripheral mode of vitamin D3 metabolism:

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

Although we don't have the exact mechanism by which vitamin D3 acts as a CH preventative, it's looking more and more like this peripheral mode of vitamin D3 metabolism and genetic expression is responsible.

I hope this answers your questions without creating too much confusion...

Take care and please keep us posted.

V/R, Batch
Back to top
« Last Edit: Sep 4th, 2012 at 11:08pm 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
pete_batcheller  
IP Logged
 
Joseph BIG
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 21
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #998 - Sep 5th, 2012 at 1:27pm
 
Hi Batch.

Thank you very much for your quick and thorough answer.

About your question = Yes, I do take 10,000 D3 IU a day.

I will increase it and will update you as always.

God bless us all.
Joseph.
Back to top
  
 
IP Logged
 
Joseph BIG
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 21
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #999 - Sep 8th, 2012 at 7:59pm
 
Hi Batch.

Updating....

I feel much better...Only one small and very light shadow in past 24 hours! Wink

By the way Batch, Prednisone is a very (if not the most) strong anti - inflammatory medical pill. How come that pill doesn't help many CH sufferers and D3 + Omega 3 do help?

All the best,
Joseph.
 
Back to top
  
 
IP Logged
 
Pages: 1 ... 38 39 40 41 42 ... 107
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!