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





Pages: 1 ... 31 32 33 34 35 ... 107
Send Topic Print
123 Days PF And I Think I know Why (Read 441334 times)
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 #800 - May 20th, 2012 at 9:12am
 
Akina,

Thank you for the awesome post and kind words...  It watered my eyes and left me speechless.... 

This is not just good news...  it's fantastic news!

Your testimony to the effectiveness and benefits of vitamin D3 and the anti-inflammatory therapy is very compelling.  It will do far more to motivate thousands of CH'ers all over the world to give this simple regimen of vitamin and mineral supplements a try than anything I could possibly say... 

Although the myofascial pain syndrome, tension headache and cluster headache are distinct, they're all painful headaches in general... and close enough for government work...   Accordingly, in as much as they responded to this regimen, when you get the results back from your next lab test for 25(OH)D, please take the Anti-Inflammatory Regimen Survey.

Thank you, thank you, and thank you again for sharing this wonderful news with us.

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
 
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 #801 - May 21st, 2012 at 2:05pm
 
Hey Ian,

Sorry you're having such a rough time...  There are a couple things to try with your oxygen therapy if you've not already given them a go.

Ventilating the lungs deeply enough with hyperventilation to cast off CO2 faster than the body generates it is an important part of oxygen therapy as an abortive for CH. 

As you're limited by an oxygen flow rate of 15 liters/minute, make up the difference by taking two breaths of room air using the forced vital capacity breathing technique with an abdominal crunch on exhalation after the lungs feel empty until your exhaled breath makes a wheezing sound for a couple seconds...    Then take a lung full of oxygen and use the same exhalation breathing technique.  Keep repeating this sequence...

3 to 4 breathing sequences like this and you should be feeling the symptoms of paresthesia with a slight tingling or prickling of the fingertips, lips or back of the neck.  You may even feel a little dizzy. 

The symptoms of paresthesia are the best indication you're getting the fastest abort of your CH as possible

The other option is to build yourself a redneck oxygen reservoir bag out of a 40 gal trash bag or 55 gal, drum liner and hyperventilate with the same forced vital capacity breathing technique.

I posted the DIY instructions and the hyperventilation breathing techniques at the following link, reply #4:

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

Regarding your 25(OH)D serum concentration...  153 nmol/L, (62 ng/mL), is just barely into the lower threshold of the green zone for a favorable CH therapeutic response to 25(OH)D and well below the lower threshold for vitamin D3 intoxication at 500 nmol/L, (200 ng/mL). 

The "Green Zone" terminology may be confusing to some.  The green zone represents a range of 25(OH)D serum concentrations reported by CH'ers who have gone pain free while using this regimen. 

Some went PF as low as a 25(OH)D serum concentration of 60 ng/mL (150 nmol/L) and some went PF as high as 110 ng/mL, (275 nmol/L)...  The rest went PF somewhere in between. 

Accordingly, if you're looking for a target 25(OH)D serum concentration to shoot for and maintain in order to stay safely in the green zone and CH PF, use 95 ng/mL, (237.5 nmol/L).  It's well below the lower threshold for vitamin D3 intoxication and well above the lower threshold of the CH therapeutic green zone... 

Having a 25(OH)D serum concentration this high means there's no worry if you miss or skip a daily dose of vitamin D3 as you should have a week or so reserves of 25(OH)D at that concentration.

As you can see in the chart below developed by Dr. Robert Heaney, MD, the 25(OH)D response over time to a vitamin D3 dose of 10,000 IU/day reaches equilibrium around 95 ng/mL., (237.5 nmol/L).

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

That makes a dose of 10,000 IU/day vitamin D3 a good therapeutic dose to get you pain free and also a good maintenance dose to keep you pain free.

For the CH'ers using higher vitamin D3 doses with a weekly loading dose to go pain free faster... 

Try to get tested for 25(OH)D as soon as possible after going PF then throttle back to 15,000 or 10,000 IU.day. 

After that, try to get tested for 25(OH)D at least once every six months to make sure your 25(OH)D levels are stable.

Obviously, if your CH return at a dose of 10,000 IU/day, you'll likely need a higher maintenance dose of vitamin D3...  Try 15,000 IU/day for starters.

If your neurologist is unwilling to order the 25(OH)D lab test or flies off the handle when you bring up a possible vitamin D3 deficiency or endocrine imbalance (some do...), see your PCP.  If the clue bird hasn't made a low pas on this individual, try to find an Integrative/Homeopathic physician or an endocrinologist... 

These last two types of physicians are generally well suited and experienced in treating vitamin deficiencies...  An endocrinologist is also the go to physician if you think you may have an endocrine imbalance.

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
 
Radar63
CH.com Junior
**
Offline


I Love CH.com!


Posts: 42
UK
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #802 - May 24th, 2012 at 5:55pm
 
Hi Batch
Many thanks for this, made a bootleg bag last weekend, it works a dream.  Also last weekend while feeling sorry for myself was trawling through loads of your past posts on other threads,  came across a comment about vit B12.  Was taking a daily multi vit with high level of B12 for energy release, stopped it as soon as I read your comment, in the last four days my pain has dropped significantly, and I only had two attacks last night that I was barely on the oxygen for 3 mins.  I don't know whether it is the 25OH D serum level coming up ( will test this weekend) or the B12, either way the inflammation and tenderness in my head has gone and fingers crossed I may have a better night than for sometime.  It does feel as if I am about to go PF 4 weeks before I would be due to! (fingers crossed).

Thanks again Batch Wink
Back to top
  
 
IP Logged
 
CDog
CH.com Veteran
***
Offline




Posts: 163
Rockies
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #803 - May 25th, 2012 at 3:23am
 
I have been on this for about 5 months and so far no results. Vit D level is at 60 and have been on 20000 IU.
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 #804 - May 25th, 2012 at 3:22pm
 
Hey CDog,

Thanks for the update...  A 25(OH)D serum concentration of 60 ng/mL is at the lower threshold for the CH response range for this regimen...  Having said that, I've also collected data on at least three CH'ers who were still having active CH with 25(OH)D serum concentrations of 55 to 61 ng/mL. 

Moreover, some CH'ers didn't go PF until their serum concentration of 25(OH)D reached 90 to 110 ng/mL.

There's a wide variation in the rate at which we metabolize vitamin D3 into 25(OH)D and also in the rate at which this metabolite is consumed. 

Are you taking the cofactors, i.e., magnesium, vitamin K2, zinc and boron?  They help metabolize vitamin D3 more efficiently into 25(OH)D.

As your serum 25(OH)D concentration is still a bit low, you can try what other CH'ers have done and take a 50,000 IU loading dose of vitamin D3 once a week in place of the usual daily dose...  or you can up your daily dose to 25,000 IU/day.

Either dosing strategy is very safe and unlikely to result in vitamin D3 intoxication at a 25(OH)D serum concentration of 200 ng/mL.  That would take a dose of more than 40,000 IU/day vitamin D3 for at least three months.

Take care, hang in there, 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
 
CDog
CH.com Veteran
***
Offline




Posts: 163
Rockies
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #805 - May 25th, 2012 at 8:58pm
 
I have done the cofactors, also started having nausea after all these months, cut back to 10000 on the vitamin d and it went away. Not sure why it started to bother me...
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 #806 - May 28th, 2012 at 9:49am
 
CDog,

The nausea bit due to an increased dose of vitamin D3 after several months has me stumped...  That said, there's nothing wrong in tummy tuning your vitamin D3 dose... 

There are a number of physiological processes either directly or indirectly related to vitamin D3 metabolism to 25(OH)D...  Any one of them or the combination of Omega 3 Fish Oil could be responsible for the upset tummy.

10,000 IU/day should continue to elevate your 25(OH)D...  It's just going to take a little longer to build your serum concentrations higher than 60 ng/mL.

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
 
RichardN
CH.com Hall of Famer
*****
Offline




Posts: 963
x1|Crossville|USA,Tn
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #807 - May 29th, 2012 at 8:13pm
 
Hi Batch

  Just checking in with my continued good news.  'Puter went on the fritz a few weeks ago, so using my wife's laptop to write this (and having to correct mis-spells every five or six words).

  So . . . still PF since mid-November.  Have an appt with my oncologist in a couple of weeks for six-month bloodwork and will ask him to check my D3 levels at that time (he's always been very accommodating so I don't expect a problem getting same)

  I've passed the beer/brandy test and none of my (formerly guaranteed attack) triggers are active.  It's really strange, after eleven years chronic, to not have the beast as a constant companion and to leave the house without my 02.  I can live with that kind of strange.

  Thanks again,

    Be Safe,   PFDANs

        Richard
Back to top
  

I can live with the beast as long as I don't have to "dance" with the bastard.
lastchantsranch  
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 #808 - May 29th, 2012 at 9:06pm
 
Hey Richard,

Thanks for the wonderful update...  Please give us an update on your 25(OH)D lab results when they come in...  I think your oncologist is going to like them as well as your other blood work nums...

Take care and thanks again,

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
 
tammygue
CH.com Junior
**
Offline


I Love CH.com!


Posts: 28
Re: 123 Days PF And I Think I know Why
Reply #809 - May 30th, 2012 at 3:44pm
 
Finally PF 2 days (Yeehaw) I have shadows still but I will take that.  I have upped my D3 to around 16,000-20,000 and switched everything to a liquid form vitamin hoping for quicker results (which I think did the trick)...

Thanks for everything
Tammy
Back to top
  
 
IP Logged
 
slacker032
CH.com Old Timer
****
Offline




Posts: 325
Los Angeles, CA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #810 - May 30th, 2012 at 5:22pm
 
Hey Batch,

Can you give me some input on my current regimen?

Breakfast:
D-3 5000 IU
Fish Oil 1000 mg

Lunch:
D-3 5000 IU
Fish Oil 1000 mg

30 minutes before dinner with a glass of lemonade:
Calcium Citrate tablets containing:
Calcium 500 mg
D-3 250 IU
B-6 10 mg
Magnesium 80 mg
Zinc 10 mg
Copper 1 mg
Manganese 1 mg
Boron 1 mg

Dinner:
D3 5000 IU
Fish Oil 1000 mg

Late night:
D3 5000 IU
Fish Oil 1000 mg

So in total, I'm up to 20,000 IU and 4000 mg of fish oil.  I was originally at 15,000 IU but once I started a new cycle and it wasn't responding to the old regimen, I bumped it up another 5000 IU a couple of days ago.  I haven't been able to get my 25(OH)D tested because I'm currently a student without health insurance. 

Is there anything I'm missing?  Are the mineral cofactors that are included in my calcium citrate supplement sufficient?  Also, if I don't respond to 20,000 IU, should I bump it up to 25,000 and if so, would I have to subsequently take more fish oil, calcium citrate and mineral cofactors?

Thanks,
Brian
Back to top
« Last Edit: May 30th, 2012 at 5:23pm by slacker032 »  
 
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 #811 - May 30th, 2012 at 6:30pm
 
Hey Tammy,

Thanks for the wonderful update...  I suspect the shadows will depart in another few days...

Brian,

You're looking good to go with your present dosing schedule... Your intake of calcium and the cofactors are spot on...

20,000 IU/day vitamin D3 should be sufficient...  Having said that, if you don't experience a favorable response after a week to 10 days at your present dosing schedule, bump your total vitamin D3 intake up to 50,000 IU one day a week as a loading dose... but maintain your present dosing schedule for the rest of the week. 

That should bring your weekly intake of vitamin D3 to 190,000 IU.  That's well below the upper safe three month limit taking 280,000 IU/week.

We've had several CH'ers use the loading dose strategy to speed up the increase in their 25(OH)D reserves with good success...

I worked my way through school at the University of Washington so I recall what life as a student was like... 10 lb bags of rice and beans at bulk prices made ends meet... but they got real old after a while... 

The only thing that made it worth while besides a degree in Chemistry was the 5 gal crock of home brew I kept bubbling away in the basement kitchen of my off-campus boarding house.

If you can spare $65...  You can get the lab test for 25(OH)D from ZRT labs without a prescription...  The link to their web site follows:

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

You can also order the $65 blood spot test kit by calling them at (866) 600-1636.  The web site has a video that will walk you through the collection procedure...  I keep two of the ZRT blood spot test kits on hand...

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
 
slacker032
CH.com Old Timer
****
Offline




Posts: 325
Los Angeles, CA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #812 - May 31st, 2012 at 4:31am
 
Awesome...thanks Batch!  I'll be sure to post some updates in this thread.
Back to top
  
 
IP Logged
 
cremar
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 2
Re: 123 Days PF And I Think I know Why
Reply #813 - May 31st, 2012 at 11:18am
 
Hi Batch,

I'm a new member currently living in Port Orchard, so we are practically neighbors.  I've been taking 10,000 IU D3 and the fish oil for a week now.  I had the lab test done two days ago and it came back at 37.  Should I up my D3 to 20,000 a day and do the 1 day a week loading dose of 50,000?  How long do you think it will take for me to get to a sufficient level?  Thanks for all your efforts!
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 #814 - May 31st, 2012 at 10:35pm
 
Shazbot!

Cremar, we're less than 15 minutes apart... We live the other side of Bremerton in the Tracyton area...  It's always a hoot to meet a fellow CH'er so we need to plan a rendezvous at some point.

The ideal conservative strategy for vitamin D3 dosing or dosing with any medication or nutrient for that mater, is to use the lowest therapeutic dose to achieve the desired results...  10,000 IU/day of vitamin D3 was unheard of a few years ago so you're already ahead of the pack...

A serum concentration of 25(OH)D of 37 ng/mL may be within the "normal reference range" for this metabolite of vitamin D3, but it's well below the lower threshold of the 60 to 110 ng/mL "Green Zone" where nearly all of the CH'ers who respond to this regimen test after going pain free... 

If you've seen any of the charts developed by Dr. Robert Heany, M.D. I've posted, you'll see the 25(OH)D response curve increases in slope (gets you there faster) as the dose of vitamin D3 goes up.

Accordingly, I would give the present dose of vitamin D3 you're taking another 5 days to a week, and if you've not experienced a favorable reaction by then, you can add the 50,000 IU loading dose once a week in place of the daily dose, and up the daily dose of vitamin D3 to 20,000 IU/day for the rest of the week.

Using this dosing strategy will speed up the process of building your 25(OH)D reserves towards the green zone by a few days...  and believe me, I know what a few less days of cluster headache pain can mean in the quality of your life...  "Been there... done it... and I've several T-shirts to prove it...

That said, pushing the total vitamin D3 dose too high too fast may not be the best way to go pain free in less time or have a significant reduction in the frequency and severity of your CH... 

Our bodies have a number of control mechanisms to deal with processes like this.  It's very likely the extra vitamin D3 you take will build 25(OH)D levels a little faster.  However,  there's no guarantee that the metabolism of 25(OH)D to the next vitamin D3 derivative, 1,25(OH)2D3, (calcitriol) will happen any faster. 

Moreover, although this metabolite is the active form of vitamin D3 that's likely responsible for the effectiveness of this regimen to prevent CH, we're still not sure this is the actual mechanism in play... there are still other processes involved...  Some times, good things are just worth the longer wait...

There's a wide range of response times for this regimen...  Some CH'ers have gone PF in 12 to 24 hours and 80% have experienced a favorable reaction before the end of the third week... Some of the heavy hitters have taken over six weeks although most of them are chronic CH'ers...

I'm confident you'll start enjoying the benefits of this regimen shortly.

Take care, hang in there and please keep us posted. 

V/R, Batch
Back to top
« Last Edit: May 31st, 2012 at 10:50pm 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
 
marc2010
CH.com Junior
**
Offline


I Love CH.com!


Posts: 35
Uk
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #815 - Jun 4th, 2012 at 4:31pm
 
Am going to give this a go I have some questions is there risks taken D3 and where can I get them? What's the 10,000 IU mean? Can multi vit do the same thanks
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 #816 - Jun 4th, 2012 at 11:23pm
 
Marc2010,

Good questions...  First of all, the anti-inflammatory regimen is very safe.  This regimen contains 10,000 IU/day (250 mcg) vitamin D3, 500 mg/day calcium and the vitamin D3 cofactors including 400 mg/day magnesium, 120 mcg/day vitamin K2, 900 mcg/day (3,000 IU/day) vitamin A, 10 mg/day zinc and 1 mg/day boron.  Sadly, there are no multivitamin tablets I know of with these ingredients and amounts...

Vitamin D3 is likely the safest supplemental nutrient we can take in as much as our skin will develop it naturally for free when exposed to the UV-B in sunlight.  In fact, if you go outside at high noon on a sunny summer day there in the UK, clad in a bathing suit without any sunblock, your skin will develop 15,000 IU in as little as 15 minutes...

The units of measure used for vitamins, minerals, and micronutrients are frequently given in International Units - (IU).  This is essentially a measure of potency. The ratio of IU to weight for vitamin D3 (cholecalciferol) is 10,000 IU/250 mcg (microgram)...  This conversion factor is different for each vitamin and micronutrient.

Most chemists and apothecary stores in the UK should carry the needed supplements.  However, obtaining the vitamin D3 in 5,000 or 10,000 IU dose per liquid softgel capsule may be problematic. Boots Pharmaceuticals carries vitamin D3, but only in 25 mcg, (1000 IU) size capsules over the counter...  Not sure what they can dispense with an Rx...

If CH'ers there in the UK using this regimen will chime in with sources for vitamin D3, you should be good to go...  If not, I have several friends and fellow CH'ers across Europe who order their supplements over the Internet from sources here in the US.  AmazonUK at the following link offers 360 of the 5,000 IU liquid softgel capsules for £9.48...

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

The lab test values like the test for 25(OH)D are a measure of concentration either in weight per volume of blood serum, i.e., 30 to 100 ng/mL, (nanograms per milliliter), the normal reference range for 25(OH)D or the same concentration expressed in molarity per volume of blood serum, i.e., 75 - 250 nmol/L, (nanomoles per Liter).

Finally, although your NHS is finally becoming aware that most people in the UK are vitamin D3 deficient, they are still a bit behind the time with respect to what constitutes a therapeutic dose of vitamin D3 and what constitutes a "normal" maintenance dose.   

Although better than no vitamin D3 at all, NHS thinks 25 mcg vitamin D3/day is adequate when the skin makes 250 mcg in less than 10 minutes of direct sunlight if clad in a bathing suit without sun screen...

So I ask you...  Who do you trust...  Your your body or the bureaucrats at NHS?

Hope this helps...  Do try to get the lab test for 25-Hydroxyvitamin D, a.k.a. 25(OH)D...  and remember, if your results come back at 30 ng/mL (75 nmol/L) and your PCP tells you your vitamin D level is "Normal..." You're up against a bit of a sticky wicket...  You need a serum concentration of 60-110 ng/mL to go free of the cluster headache pain.

Take care,

V/R, Batch
Back to top
« Last Edit: Jun 4th, 2012 at 11:37pm 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
 
marc2010
CH.com Junior
**
Offline


I Love CH.com!


Posts: 35
Uk
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #817 - Jun 5th, 2012 at 2:34am
 
Thanks for that so should I get a blood test first to check my levels also I take propranolol 80 mg sr for anxeity is this still safe to take 1more thing is am going to get the GON BLOCK this Friday will this have any affect
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 #818 - Jun 5th, 2012 at 6:34am
 
Hey Marc,

I'm not a doctor so these are good questions for the neurologist that's going to give you the GON block.  I did check, and could not find any interactions between propranolol and cholecalciferol (vitamin D3) or Omega 3 Fish OIl.

Betamethasone or the other corticosteroids typically used in the GON injection may be another story...

The greater occipital nerve block should buy you a week to 10 days of CH pain relief if you're lucky.  I would have all the anti-inflammatory regimen ingredients ready to take by then as the CH pain can return with a vengeance...

Typical response time to a pain free state with this regimen varies from 12-24 hours out to two weeks for most episodic CH'ers...  Chronic CH'ers tend to take longer...  some out to as much as six weeks to two months depending on the 25(OH)D level at start and the vitamin D3 dose.  It's a good idea to have oxygen therapy handy at a flow rate of 15 liters/minute...

In the mean time, try to get the lab test for your 25(OH)D serum concentration as soon as possible. If you're deficient or insufficient (less than 50-75 nmol/L), it would be unethical not to treat this condition...

Take care and please keep us posted.

V/R, Batch
Back to top
« Last Edit: Jun 5th, 2012 at 6:36am 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
 
Zeitgeist
CH.com Alumnus
***
Offline


Clustery szcmustery


Posts: 91
|Norway|
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #819 - Jun 6th, 2012 at 9:24am
 
A Danish study has found higher mortality in D-deficient people, but also in those having higher than 50 nmol/L. The mortality is much higher when deficient though.

This study is part of the Danish «CopD», Copenhagen Vitamin D-study which is based on 247.574 people from Copenhagen.

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

There may be reason to avoid the very high doses over time.  I've seen people here talk about 20.000 IU a day with additional 50.000 IU weekly «loading doses». That may be wise on a short term, to quickly raise serum levels, but it is not wise long term.

Monitor levels regularly.  I myself found that winter time levels actually dropped with 7.500 IU a day, but kept climbing with 10.000. Apparently  the ideal strategy for me is to decide what level I want to maintain (for instance 150 nmol/L) and maintain it with ca. 9.000 IU a day.

Edit
Here is a possible explanation
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
Back to top
« Last Edit: Jun 6th, 2012 at 9:39am by Zeitgeist »  

-zg
 
IP Logged
 
Radar63
CH.com Junior
**
Offline


I Love CH.com!


Posts: 42
UK
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #820 - Jun 6th, 2012 at 11:18am
 
Marc2010 batch is spot on with the amazon soft gels, that is what I use.  The best fish oil by far is from health span, I use 1000 mg capsules, used to use the st Clements but there is lots of vita in that, read some nasty stuff about too high vit a.  Have you filled in your Hoof, alythough I am pain free for a lot of the year thanks to Batch, I do have 5 to 8 weeks with a fair amount of pain now.  O2 is a must in our house!  Bear in mind though the local fire brigade like to know if you have oxygen in your house.  Don't forget the cofactors, amazon once again for those, including the vit K.  If you are short of anything apart from high dose vit d3 Holland and Barratt can get you through if you want to hand over an arm and a leg.  Finally Birmingham and Sandwell Hospital do a really good Blood spot test for about £30.  Drop me a message if you want to ask anything UK specific, anything else there is only one source, the Batch!
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 #821 - Jun 6th, 2012 at 4:56pm
 
Rune,

I was waiting for someone to post info on this Danish study...  It turns out there was a similar study, also a meta analysis (analysis of medical database information using statistical methods), that had a similar reversed J- or U-shaped mortality curve with respect to serum concentrations of 25(OH)D. It too suggested a possible upper limit to 25(OH)D concentrations and that higher serum concentrations of 25(OH)D were associated with increased mortality...

I must admit that caught my attention, so I did as you did and started looking further for peer reviews...

Fortunately, I found just such a peer review by Dr. Cannell, M.D., who had already run the trap line on these two studies... He too had trouble accepting the conclusions and here is what he found among other peer reviews:

(1) According to a Cochrane review, vitamin A, as in cod liver oil, is associated with excess mortality. "How do I know they were taking cod liver oil to get higher vitamin D levels?" Because, consumption of cod liver oil in Norway is about 44% by females, and females tended to have the highest 25(OH)D levels in the above Danish study.

(2) There were no less than eight (8) similar meta-studies done in non-Scandinavian, (non-cod liver oil) countries where people with higher serum concentrations of 25(OH)D actually lived longer.

(3) The weight of medical evidence assigned to studies like this is low...  primarily because it's a meta-analysis of medical data collected for many reasons in general and not from a "Controlled" study designed specifically to test any particular hypothesis by controlling other possible variables... 

As these two meta-analysis studies were unable to establish any causal relationship between vitamin D3 dose and mortality, it is entirely possible the increased mortality rates were caused by too much vitamin A...

Finally, to my way of thinking...  Experts in forensic paleontology generally agree the earliest australopithecines (paleo-man), very likely evolved 5 million years ago or shortly thereafter.  Paleo-man also ran around as hunter-gatherers in East Africa wearing essentially nothing... so likely achieved very high 25(OH)D levels due to constant sun exposure even with dark skin. 

Accordingly, if increased serum concentrations of 25(OH)D was responsible for increased mortality as the Danish study concludes...  paleo-man would have gone extinct long before he completed the migration to the Northern latitudes and the geographic area now known as Scandinavia...

To quote Dr. Connell, "I doubt it. I doubt Mother Nature is that dumb."

All this puts me completely at ease and feeling very comfortable having 25(OH)D concentrations much higher than 50 ng/mL...  Mine is likely twice that on a frequent if not constant basis...

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
 
dhjacks
CH.com Newbie
*
Offline


I love YaBB 1G - SP1!


Posts: 13
x0|San Jose|USA||0|0|CA,California
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #822 - Jun 8th, 2012 at 12:14pm
 
This vitamin D3 info has me very excited. I'm actually convinced it is going to work for me. 
I'm episodic, and my clusters have stretched out over the past 4 or 5 years to where I have them on for a year, then off for a year.  I'm about 3 1/2 months into my 'on' year and the HA's have been ramping up in frequency.  I read about the D3 regimen 2 nights ago, and ran off to the pharmacy.
No headaches last night, but that could be coincidence as it's only been a couple of days.  I took 50,000 day one and will go 20k / day for a month.
I haven't done a test, so I know that won't help your study as much, but I will keep you updated.
Back to top
  
 
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 #823 - Jun 8th, 2012 at 3:12pm
 
Batch,

Being Nordic, I have from-childhood experience with "the wonders" of cod liver oil, or "tran" as it it named in Norway. No tran for the children, no- good family.  Se for you self, this cute Norwegian girl in action
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
(Mølller's Tran being the lead cod liver oil brand)


Excessive vitamin A, may be one factor explaining the Danish findings. But there may be others. We don't know, and neither the study nor the scientists make any speculations on this point.  It is a scientific finding, and a firm one due to the enormous amount of subjects.  The numbers state that  there is a significant higher mortality and a less significant higher mortality below and above 50. As of cases the scientist are careful not to draw conclusions.

And wisely. An elder person I know, smoking heavily and fond of red wine, spend a fortune on a variety of vitamins, minerals and other good-for-you products.  I assume her 25(OH)D level is well beyond the average. I suspect her contribution to the average mortality rate will be negative, but I won't blame it on vitamin D. For all I know, it may be "excess" vitamin D that keep her going. The point being - the Danish findings says nothing about reasons, the study merely states facts, and among those the most interesting is the explicit higher mortality when 25(OH)D levels are low, and very low.

As for paleo-man. I assume he/she avoided the sun just as experienced as people living in very sunny areas today. Exposed of sun, surely, but not a sunbather.

Personally I find the Danish project very interesting as there is a lot of scientists working on it, and with many different perspectives. The study in question is one of many others.
Back to top
  

-zg
 
IP Logged
 
cremar
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 2
Re: 123 Days PF And I Think I know Why
Reply #824 - Jun 8th, 2012 at 7:06pm
 
Hi again Batch,

Well I've waited a week and still not feeling any better so I guess I'm ready to ramp up to 20,000IU.  Before I do I thought I should mention that I'm starting to wonder if I have something called hemicrania continua.  I have headaches on one side of the head but they are dull and it seems that I never have any time where I'm completely pain free.  I was on Indomethecin for years and it worked great (another indicator that I have hemicrania) but now it has decreased my kidney function and the doctors want me off it.  So I'm back to having headaches.  Anyways, do you think I should continue with the Vitamin D3 therapy?  It can't hurt to try right?  Thanks!
Back to top
  
 
IP Logged
 
Pages: 1 ... 31 32 33 34 35 ... 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!