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123 Days PF And I Think I know Why (Read 444440 times)
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Re: 123 Days PF And I Think I know Why
Reply #825 - Jun 8th, 2012 at 7:43pm
 
cremar,

Sorry - I don't know if you suffer from hemicrania continua or CH, or some lesser kown face of Mr. Cluster. Your description doesn't match anything I have experienced. Hopefully Batch' regime will help.  As long as not over-done I can't think of any common reason not try and keep trying. It has a variety of good effects!
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Re: 123 Days PF And I Think I know Why
Reply #826 - Jun 9th, 2012 at 5:23am
 
HI Marc
Reading through the posts again another thought comes to mind.  Batch quotes the graph and studies where the suitable levels of 25(OH)D srum levels need to be above 150 nmol/L.  I am currently waiting on my latest test as my pain begins to diminish to virtually nothing this time ( Cheesy).  Just be aware that when you do the test from Birmingham and Sandwell, (link below) it will come back as normal if above 50 nmol/L .  My last one from them was 153nmol/l, three weeks ago.  So look at the studies on here and look at the comments of Batch as I had a bit of a wobbly moment when the good old NHS was telling me that my 25(OH) D serum levels were well above adequate and the weight of evidence on here told me I still needed to push it further. I have continued to push it further and now hoping to finally go PF after a false moment of hope 2 weeks ago.  Dont forget the co-factors though!

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Kind regards

Ian Grin Grin Grin
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Re: 123 Days PF And I Think I know Why
Reply #827 - Jun 12th, 2012 at 1:29pm
 
[size=14][/size] Hi Batch

Finally had two pain free nights, also got the results back of the 25 OH(D) serum test, 193 nmol/l.  I took the test about a week ago. On the 5 may my level was 153nmol/l, so an increase of 40nmol/l on 20,000 iu per day and 50,000 loading once per week across 4 weeks. Will check on the graph to see where that puts me in terms of absorption.

Is it not a wonderful feeling when you wake on the first morning for some time without staring down the beast!

Keep safe

Ian Cheesy Cheesy Cheesy
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Re: 123 Days PF And I Think I know Why
Reply #828 - Jun 13th, 2012 at 1:58pm
 
Hey Ian,

Outstanding news!!!  It is a wonderful feeling...

153 nmol/L (61 ng/mL) appears to be your lower serum 25(OH)D concentration threshold to remain CH PF...  This is consistent with 25(OH)D data provided by other CH'ers who have gone pain free on this regimen.

The task now is to find the maintenance dose of vitamin D3 that keeps you at or above 153 nmol/L.  This shouldn't be too difficult.  Give yourself another week at your present vitamin D3 intake then drop the loading lose for a few weeks to see what happens...  I suspect you'll remain PF.  Stay at that level for a month then test for 25(OH)D again.

If you're close to the average 25(OH)D response curves developed by Dr. Heany, your 25(OH)D serum concentration should be around 250 nmol/L, (100 ng/mL).  This serum concentration of 25(OH)D is still well below the lower threshold for vitamin D3 intoxication at 500 nmol/L, (200 ng/mL), so should be very safe.

At that point you should be able to safely drop back to 15,000 IU/day vitamin D3 without any fear of a CH relapse.

I bounce between 10,000 and 20,000 IU/day vitamin D3 but keep the rest of the regimen stable per the following updates to the basic regimen:

The updated suggested regimen includes:

10,000 IU/day vitamin D3 (Add more as needed)
  2,000 mg/day Omega 3 Fish Oil
     500 mg/day Calcium (calcium citrate preferred)

In order to receive the most health benefit from increased levels of vitamin D, the proper cofactors must be present in the body. Vitamin D has many cofactors, but the ones listed below are the most important. Magnesium should be considered one of the most important cofactors of all, but vitamin A is also a strong contender for that title as long as you don't exceed the RDA.  Too much vitamin A can cause real problems...

   •      Magnesium   400 mg/day  (liquid softgels,
          magnesium citrate or magnesium gluconate
          preferred)

   •      Vitamin K2    125 mcg/day

   •      Vitamin A*     900 mcg (3,000 IU) for men and
                             700 mcg (2,333 IU) for women

   •      Zinc               10 mg/day

   •      Boron              1 mg/day


* Vitamin A can be difficult to find as a single supplement and it's possible to get too much from cod liver oil.  Accordingly, it's prudent to meet your vitamin A needs with a carrot a day, or a serving of spinach or squash as they also contain beta carotene, a vitamin A precursor. 

You can also meet your vitamin A needs with a serving of chicken or beef liver a week.  If all that's too difficult, a single Centrum Silver multivitamin tablet has the RDA for vitamin A at the top of the list.

The rationale for taking vitamin A (retinol), stems from several studies over the last few years that found the final stage of vitamin D3 metabolism from 25(OH)D3 to 1,25(OH)2D3 also takes place in all the body's cells and not just the kidneys...

As this final stage of vitamin D3 metabolism takes place in all cells: heart, skeletal muscles, bone, skin, brain, nerve, and the list goes on, I'm beginning to suspect it's this mode of vitamin D3 metabolism that's responsible for its prophylactic effect on cluster headache..

This mode of vitamin D3 metabolism takes place as long as serum 25(OH)D and vitamin A are present in sufficient concentrations.

You can read about the vitamin D3 cofactors at the following link: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

There's also a fantastic video of Dr. Heaney explaining the "autocrine" mode of vitamin D3 metabolism in a presentation titled "Vitamin D: Nutrient, Not A Drug" at the following link.  If you're not a fan of taking vitamin D3 and the above regimen of vitamins, minerals and micronutrients for a longer life... this video will give you second thoughts...

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Finally, in response to a question about how vitamin D3 can have so many health benefits if serum 25(OH)D is > 30 ng/mL, (75 nmol/L), Dr William Grant has a paper explaining that every cell in the body has vitamin D receptors, and when activated by 1,25-dihydroxyvitamin D, (calcitriol), the active metabolite and hormonal form of vitamin D3 and vitamin A, can affect the expression of about 1000 different genes.

To back that up, a 12 April, 2012 Level-1 RCT by Wagner et all, titled "Double-blind randomized clinical trial of vitamin D3 showing effects on tissue calcitriol levels, gene expression and proliferation immunohistochemistry in prostate cancer," concluded that higher oral vitamin D doses produce higher levels of calcitriol within prostate tissue, and that higher prostate calcitriol relates to lower androgen receptor mRNA, higher miRNA signalling, and diminished expression of the proliferation marker Ki67 in prostate cancer.

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Sorry for the long-winded response, but I think this information is starting to connect the dots for us cluster headache sufferers...

Take care and thanks again for the great news.

V/R, Batch
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« Last Edit: Jun 14th, 2012 at 9:00pm by Batch »  

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Re: 123 Days PF And I Think I know Why
Reply #829 - Jun 13th, 2012 at 5:24pm
 
[size=16][/size]

Hi Batch

Please don't apologise for your long responses, as a Vice Principal now in an English High School I am always telling the children we learn from everywhere.  You have truly helped me come to terms with this and begin to understand what is happening to me and my CH friends.  Your knowledge fascinates me, so please keep posting, the mixture of advice and fact is so interesting.

Take care

Ian
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Re: 123 Days PF And I Think I know Why
Reply #830 - Jun 14th, 2012 at 12:56pm
 
Yes, I'd have to second Ian on the "no need for apologies". Also your emails have encouraged me to keep going with the regimen even though it hasn't kicked in for me yet. I will say, though, that this thread is a massive undertaking to tackle for a CHer in the throes of a cycle. I have enough web skills and resources to put together some sort of summary page with graphics, sections, links to places to get the vitamins, etc. (I work for an Apple retail store and we are given 2 hours a week to work on projects like this for our own development.) So if anyone's interested, let me know.
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Re: 123 Days PF And I Think I know Why
Reply #831 - Jun 15th, 2012 at 10:25pm
 
Ian, Jax,

I've updated and bumped the Anti-Inflammatory Regimen and Survey post...  It should answer the issue of where to find most of what new and old CH'ers need to know about this regimen in one post... 

Take a look and tell me what you think...

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #832 - Jun 15th, 2012 at 11:36pm
 
Okay yeah, I hadn't really been following the other thread you mentioned.  Yes, it's much easier to follow than this one.  To me, it would make sense to have the regimen posted in one place, keeping the comments to a minimum, and have the 123 days thread as a forum for discussion.  But it looks like that's what we have now, and I just missed it.  Good work, Batch.
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Re: 123 Days PF And I Think I know Why
Reply #833 - Jun 16th, 2012 at 2:04am
 
Batch,

The latest sitrep from me.  Still not PF, although after looking at my last test results again I realized I'm still not high enough at 131, so I have upped my daily intake to 25,000 a day  for the last week.  I'm down to heavy shadows about 3 to 4 times a day with a bad break through about every 3rd day.  We're making progress!

Jerry
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Re: 123 Days PF And I Think I know Why
Reply #834 - Jun 21st, 2012 at 8:28am
 
FYI - just chiming in- I have started this (D3) regimen today.  Stay tuned for updates.  I started yesterday, and I have already missed my VERY regular morning CH in this cycle - but I'm pretty sure it might just be the prednisone I've been on FINALLY working - although I've been on decreasing doseages for more than 2 weeks and today ist he first day I've not had a headache.  SO- who knows.

10,000 iu D3
2,000 Omega
500mg Magnesium
....
Updates to follow!
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Re: 123 Days PF And I Think I know Why
Reply #835 - Jun 25th, 2012 at 7:01am
 
So.. on this for day 5, nothing yet, in fact headaches increasing in frequency and intensity.  Strill trying to get prednisone dosage/verapamil right.  another doc appt. soon.  Hoping d3 works in another few.
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Re: 123 Days PF And I Think I know Why
Reply #836 - Jun 25th, 2012 at 12:37pm
 
Joshua, Jerry,

Thanks for the feedback...  Make sure you're getting the RDA for vitamin A each day.  We're beginning to think the prophylactic effect vitamin D3 has on cluster headache involves the autocrine mode of vitamin D3 metabolism that takes place outside the kidneys in the body's cells...  brain and nerve cells included... 

In this case, serum 25(OH)D is metabolized into it's active metabolite 1,25(OH)2D3 within the cells as needed.  All that's required is the serum level of 25(OH)D needs to be high enough >60 ng/mL and retinol, (vitamin A), needs to be present at the RDA...  ~ 900 mcg/day, (3500 IU/day).  I take a single Centrum Silver multi-vitamin tablet just to make sure.

Joshua, You'll have a better idea how long it will take to respond to this regimen once you have the results back from your lab test for 25(OH)D.  The lower the serum concentration of 25(OH)D, the longer it takes to go pain free.

Thanks again for the updates...  Hang in there and please keep us posted.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #837 - Jun 25th, 2012 at 3:25pm
 
Hi!!
I am a new member and was reading about the D3 regimen. Is one supposed to take it all at once or spread out over the day? Also, what is the best time time take it? My attacks usually start about 9 pm.

Thanks--
Zetner
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Re: 123 Days PF And I Think I know Why
Reply #838 - Jun 25th, 2012 at 10:04pm
 
Hey Zetner,

Welcome aboard.  You can take the entire regimen all at once and any time of the day.  Having said that, it may prove slightly more effective if taken a couple hours prior to your first attack of the day/night. 

The complete regimen, instructions for use and dosing strategy can be found at the following link here at CH.com.

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Take care and please keep us posted on your progress with this regimen.  We need the feedback.

V/R, Batch
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« Last Edit: Jun 25th, 2012 at 10:15pm by Batch »  

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Re: 123 Days PF And I Think I know Why
Reply #839 - Jun 25th, 2012 at 10:33pm
 
Batch--

Thanks for the link. Will let you know how it pans out.

Zetner
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Re: 123 Days PF And I Think I know Why
Reply #840 - Jun 26th, 2012 at 6:17pm
 
This is very unscientific, I haven't gotten any of the test that Batch suggested but here goes:

My cycle should have started in May.  In anticipation of my cycle I started taking the following daily in early April: 12,000mg Vit D3, 500mg Magnesium, multi B vit, and 2000mg Flaxseed (vegetarian alternative for Omegas).

It's now almost July and my cycle still hasn't started!  Again, I know that this is anecdotal, and I'm not going to say there is a cause and effect yet, but at least I have reason to be hopeful.

So far so good!
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Re: 123 Days PF And I Think I know Why
Reply #841 - Jun 26th, 2012 at 6:39pm
 
Judge - Good on ya! It always brings joy in clusterville when this kind of news is shared.

Just one minor correction: I think you meant 12,000 i.u.'s (international units) as opposed to 12,000mg (which would result in immediate toxic shock or death).

For example, with vitamin D3, one thousand micrograms (1,000 µg or 1mg) = 40,000 i.u.

So if you took 12,000 milligrams (mg) of vitamin D3, you would be taking 480 million i.u. (480,000,000 i.u.).

If you did that, I'm betting you would be wishing you hadn't. But only for a little while. Wink
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Re: 123 Days PF And I Think I know Why
Reply #842 - Jun 26th, 2012 at 8:16pm
 
You're right Brew, that's what I get for trying to post and feed 2 kids dinner at the same time  Cheesy
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Re: 123 Days PF And I Think I know Why
Reply #843 - Jun 30th, 2012 at 10:50pm
 
HI Batch

  Got the results from my serum test . . . . .  69.0  ng/mL.

  Still PF and do have more energy/stamina  . . . a very welcome  addition to the PF time I've enjoyed since mid-November.

  I use 10,000 IU D3 daily and that seems to be doing the trick for me (and of course the Cal Citrate w/mag, Omega 3 fish oil and zinc.

  Be Safe,    PFDANs

    Richard

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Re: 123 Days PF And I Think I know Why
Reply #844 - Jul 1st, 2012 at 4:49pm
 
Hey Richard,

Thank you for the wonderful update.  Thanks also for the lab test data on your 25(OH)D serum concentration as it clearly serves to strengthen our findings that the optimum range for CH'ers to remain CH pain free is 60 to 110 ng/mL, (150 to 275 nmol/L).

Thanks again,

V/R, Batch
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« Last Edit: Jul 1st, 2012 at 4:50pm by Batch »  

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Re: 123 Days PF And I Think I know Why
Reply #845 - Jul 7th, 2012 at 7:25am
 
Ok - so began D3 on 6/21.  I've also been on Predinsone to try to get some relief from a chronic cycle that stopped responding to Verap. (has been working for over 2 yrs with no other drugs.)
.
I take 20-30,000 ius of D3 per day with a 50,000iu loading dose Mondays (since 6/21).  I also take the Omega, the Magnesium and will now also start taking a multi vitamin. As I taper down I'm getting hit about once a day so far with shadows on and off.  Not sure how effective D3 is or if I just need more time higher dose? 
.
I haven't had a chance to get a test yet and they don't ship those tests to NY state for some reason.
.
Neuro on the 12th -- to evaluate either increased verap or addition of maybe lithium.
.
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Re: 123 Days PF And I Think I know Why
Reply #846 - Jul 7th, 2012 at 1:26pm
 
[size=20][/size]Hi Batch

Just checking in, have been pain free for nearly a month now, going to test tomorrow.  Am really thinking hard about the nightmare summer we are having here, i.e no sunshine at all.  I think colleagues and people around me think I am nuts always trying to persuade them to take some D3.  Be interesting to see if we go the whole summer without significant sunshine how many UK CHers suffer more than normal.

Kind regards

Ian Grin
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Re: 123 Days PF And I Think I know Why
Reply #847 - Jul 7th, 2012 at 2:58pm
 
Quote:
Am really thinking hard about the nightmare summer we are having here, i.e no sunshine at all.

It's all we've BEEN getting here in the Midwestern US. We're about a week away from little to no yield in the fall from the harvest. If we don't get rain in the next week (and there's none forecast for the area I'm in), the corn crop is done.
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Re: 123 Days PF And I Think I know Why
Reply #848 - Jul 9th, 2012 at 7:18am
 
Update:
6/21 - started D3 - begin tapering off prednisone

Today - 20mg pred/480mg verapamil

I've been PF for three solid days - something that had been impossible pre-predisone and also pre-D3.

Historically after I pass the 40mg on the taper down my CHs come back, but they haven't - I'm chalking it up to D3.
.
Thanks to BATCH for his continued support and helpful advice.
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Re: 123 Days PF And I Think I know Why
Reply #849 - Jul 9th, 2012 at 2:44pm
 
Hey Joshua,

Thank you for the wonderful update.  This is the kind of feedback we like to hear.  The important thing now is to stay on this regimen at the present vitamin D3 dose for at least another two weeks. You still have CH... but YOU are in control...

After that, you should be able to drop back to 10,000 IU/day of vitamin D3 without any worry of a relapse.  That will be your normal maintenance dose. 

I've been taking the complete regimen with 10,000 IU/day vitamin D3 for nearly two years...  so has my wife.  The only difference is she takes 15,000 IU/day.  As a side note, neither of us has had a cold or flu since we started this regimen... 

If you skip or miss a daily dose, you'll know soon enough...  even more so in the first few weeks after going pain free because you'll burn through your small reserve of 25(OH)D and the beast will come a knocking. 

As soon as you realize you missed the daily regimen take it all as soon as possible.  If you missed taking the complete regimen for 24 hours, take the normal dose of everything for the new day and just the vitamin D3 for the day you missed.

Without a lab test for your 25(OH)D we won't know for sure, but two weeks from start of regimen to the first full pain free day is about average for this regimen with a starting serum concentration of 20 ng/mL.  That also assumes your present 25(OH)D level is somewhere North of 60 ng/mL.

Try to get this lab test so you'll know for sure the 25(OH)D level that keeps you pain free.

Take care and please keep us posted.

V/R, Batch
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