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neuropath

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Re: 123 Days PF And I Think I know Why
Reply #1175 - Jan 17^th, 2013 at 5:41am

I am giving Batch 3.0 another try (3rd attempt) and have started to experience an increase in frequency of attacks (as have others I believe).

The attacks are softer and more acidic in their onset, generally linger longer and take more time to shoot down with O2. Is this something that others have experienced? If so, did it eventually lead to an improvement?

I am using 30,000 D3 and the other ingredients as recommended. Is it advisable to spread the intake across the whole day to perhaps minimise the phenomenon, which generally sets in approx 3 hours after taking the whole dose. From then on I get hit approx. every 2 hours.

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1176 - Jan 17^th, 2013 at 9:14am

Neuropath,

Good question. The available literature on the pharmacokinetics of vitamin D3 suggest taking it with the Omega 3 fish oil and with the largest meal of the day to increase absorption. If you still want to split the dose try to take it with each meal.

Regarding an up-tic in the frequency of your CH when starting or restarting this regimen... this has been reported by a few CH'ers... Nearly all of them also reported the frequency dropped as they built their 25(OH)D reserves.

What were the results of your latest lab test for 25(OH)D? It appears the body starts consuming vitamin D3 metabolites at higher rates in the presence of viral infections like a cold or the flu... Magnesium, zinc and vitamin A become even more important when this happens.

Take care and please keep us posted.

V/R, Batch

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shager132

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Re: 123 Days PF And I Think I know Why
Reply #1177 - Jan 17^th, 2013 at 11:57am

Hello everyone, Shane here...new to the group but not the pain.

35yr male
Episodic
Right-Side
2-4 per day
10 week duration (typically)

Migraines as a kid, full blown cluster cycle when I was about 21-22. Misdiagnosed and treated for several years until about 4 years ago. After Spinal Taps, sinus scans, worthless pain killers finally started to get some meds. that actually had a chance to do something...here I am, 2nd week into my January cycle and pretty fed up but hopeful.

After painfully trying to read many of our stories (painfully because staring at my ipad after a day of PC work with headaches an no sleep seems to be an olympic like tough event), I was so happy to hear of the success many of you have had to Batch's vitamin trial. I immediately drug my self to the store and picked up my bag of vitamins and went home to start.

To start:
10,000iu D3
1200iu Fish Oil Soft Tab
240 magnesium
50mg Zinc
600mg Calcium Citrate
1 Chewable Multi-vitamin

So, I have hopes that working with this can at least reduce the severity after awhile and tinkering with the dosages over time. Regardless, thank you all because even if it doesn't work for me, it gives me a small glimmer of hope that something can assist this ridiculous and IMO overlooked illness.

(Past Meds)
Depakote
Topamax
Prednizone
Robaxin
Indomethacin
Acupuncture
Massages
DHE Injections (used nightly as a preventative for the next day so i could work...did well for me but you can only stab yourself so many times or afford enough meds)

After realizing I was self prescribing because my Neuro. was out of ideas as well as incorrectly set up up with O2 with a minimal flow rate and nostril thingys instead of a mask, I took my services elsewhere to a headache clinic at Wake Forrest University. My new Neuro. immediately said "wow, yeah these cocktails were not what i would have used..." - shocker.

So, last week she started me on Pred and Immitrex Pills which was a bit discouraging since the pills only set in about an hour after I already have the headache.

Now finishing my taper of Pred and started Verapamil (80mg for 1st week, then 120mg next week)
This along with my Batch-Vit cocktail I hope will et me on the right path. I have another appointment with her next week so I hope to discuss getting some O2/with mask and flow rates as discussed here as well.

Lastly, to get 30 seconds (which is a lot with the beast) relief, I would even sniff warm salt water up into my sinus on the right side in hopes to unblock and relieve the pressure which does help, but again, for only a very small but welcome 30 seconds.

I apologize if this was too much info for this topic, but Im very excited to see how Batch's Vit. will work for me. I will keep you posted and pray for everyone of you!

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1178 - Jan 17^th, 2013 at 2:57pm

Hey Shane,

Welcome to CH.com and to the anti-inflammatory regimen. You've come to the right place.

Were you able to get the lab test for 25(OH)D when you saw your new neurologist? If not, call him and ask if he will call in a script to the local medical diagnostic lab so you can get this test.

The normal reference range for the 25(OH)D lab test is a serum concentration of 30 to 100 ng/mL. Most CH'ers with active CH who have gone in for this lab test before starting this regimen or within a few days after starting it, have tested deficient... i.e. less than 30 ng/mL.

Once you've been on the basic anti-inflammatory regimen with 10,000 IU/day vitamin D3 for thee to four days, to make sure you don't have a reaction to any of the supplements, you can do what other CH'ers have done and bump the vitamin D3 dose up to 20,000 IU/day plus a once a week loading dose of 50,000 IU vitamin D3.

Doing this will speed up the process of building your 25(OH)D reserves into the "green zone" (60 to 110 ng/mL) where most CH'ers have reported a sustained pain free response.

It's best to stay on this vitamin D3 dosing strategy for a week to 10 days after you start having a favorable response. At that point you can drop the loading dose, but stay at 20,000 IU/day for at least a month then get tested again for 25(OH)D.

Once your 25(OH)D serum concentration is in the green zone, a maintenance dose of 10,000 to 15,000 IU/day vitamin D3 should be sufficient to keep you there.

We've a growing number of episodic CH'ers who have stayed on this regimen throughout the year after their "regular" cycle ended... Most of them have sailed pain free through the next cycle...

Take care and please keep us posted.

V/R, Batch

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slacker032 CH.com Old Timer Offline Posts: 325 Los Angeles, CA Gender:	Re: 123 Days PF And I Think I know Why Reply #1179 - Jan 18^th, 2013 at 2:35am Can someone post the link to the home test kit for 25(OH)D? Tried searching the thread but couldn't find it.
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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1180 - Jan 18^th, 2013 at 1:42pm

Here you go...

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

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They even have a video that gives you the "How To" collect blood spots at home for analysis by ZRT Labs.

I keep two of their test kits on hand at all times...

Take care,

V/R, Batch

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« Last Edit: Jan 18^th, 2013 at 1:42pm by Batch »

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slacker032 CH.com Old Timer Offline Posts: 325 Los Angeles, CA Gender:	Re: 123 Days PF And I Think I know Why Reply #1181 - Jan 18^th, 2013 at 1:50pm Thanks Batch
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Radar63 CH.com Junior Offline I Love CH.com! Posts: 42 UK Gender:	Re: 123 Days PF And I Think I know Why Reply #1182 - Jan 18^th, 2013 at 2:38pm Hey batch and all Ian here, just done a test, 213nmol, after being on the regimen for 10 months now properly. Was 193 Nmol 4 weeks after the end of last episode in June/July. Have been taking 20k plus cofactors every day, should I ramp that back to 15k? Hope we are all keeping pain free. Ian
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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1183 - Jan 18^th, 2013 at 5:18pm

Hey Ian,

Good question... A stable 25(OH)D serum concentration of 213 nmol/L, (85.2 ng/mL), is dead center in the middle of the therapeutic green zone for cluster headache as you can see in the following chart developed by Dr. Robert Heaney, MD...

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Understand that these curves represent an "average" 25(OH)D response to vitamin D3 dose... and that no matter the dose, all curves reach an equilibrium and stabilize by the 5th to 6th month.

That 20,000 IU/day vitamin D3 plus the cofactors is holding your 25(OH)D serum concentration between 193 and 213 nmol/L, and you're not having any other problems... I wouldn't change a thing...

You're body is likely consuming 25(OH)D and the active hormonal vitamin D3 metabolite, 1,25(OH)2D3 at higher rates than the average CH'er so I wouldn't worry that it's taking 20,000 IU/day vitamin D3 to hold your 25(OH)D serum concentration stable at 213 nmol/L.

If you stay at your present dose of vitamin D3, I suspect your next CH cycle will be a non-event... and you'll sail through it pain free...

Take care and please keep us posted.

V/R, Batch

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« Last Edit: Jan 18^th, 2013 at 5:29pm by Batch »

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Radar63

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Re: 123 Days PF And I Think I know Why
Reply #1184 - Jan 19^th, 2013 at 3:35am

Hi Batch

Thank you once more for the advice. I am just about 4 weeks off my time of the year for my next episode, I am 50 in 3 weeks and hoping to be able to celebrate appropriately!! Grin

. I will test again in 4 weeks and see where I am and let you know.

What I really like about this thread is that each time I come back you have researched further and have added more information for us all to digest. Thank you so much for this. A colleague asked me the other day about who are my guru's, need I say more!

Cheers

Ian

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enli

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Re: 123 Days PF And I Think I know Why
Reply #1185 - Jan 19^th, 2013 at 9:24am

64 male, 22yr CH fighter, 15yrs w/6 different neurologist, name it I have tried it (except this regime and ClusterBuster regime).
Episodic for 15yrs (CH Oct-Apr, PF other months), then chronic for 3yrs, finally got neuro to let me try lithium and was pain free for almost two years. Now "They're back!!!" and yes they started in Oct 2012

Current meds: Lithium 300mg twice/day, Verapamil 240mg twice/day

"Normal" day: Light ghost comes and goes most of the day, if I try to nap usually will wake after an hour with K3-4 ache (O2 for 10min will abort), to sleep I go--1 to 2 hrs later will wake with ache and can be K2 to K7, if low just O2 and back to sleep if high will take half Relpax then O2. Once or twice a month have K20!! (ha-ha) and keep trex shots available for these special occasions. 4 hours after shot will take whole Relpax, CH will rebound from trex without Relpax.

Company closed last April (after 12 years with them), lost job and insurance, had stockpiled Relpax and Imitrex, other meds and O2 cost about $200/month. Money is an issue and results sound promising for this regime.

Found this thread last night and am own my way to Walmart for D&OIL, will keep posting as to results. Assuming this starts to work, should I taper off the Lithium and Verapamil at same time or Lithium first and then Verapamil?

Always ask the prettiest girls to dance, all they can say is 'No!"

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1186 - Jan 19^th, 2013 at 3:23pm

Hey there Enli,

Welcome to CH.com and also to the Anti-inflammatory regimen...

You can find the complete list of the supplements in this regimen along with dosing, vitamin D3 dosing strategies, drug interactions and contraindications at the following link:

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The vitamin D3 cofactors, magnesium, zinc, vitamin A, vitamin K2 and boron are important... They're essential components of the anti-inflammatory regimen as they all aid in the proper metabolism of vitamin D3.

Regarding tapering off the lithium and verapamil once you start having a favorable response to the anti-inflammatory regimen with vitamin D3...

I'm not a doctor so it's best to consult with the physician who prescribed these medications about how best to stop taking them.

When you do check with him ask for a scrip for the 25-Hydroxyvitamin D, a.k.a. 25(OH)D lab test. If that route of getting this lab test too expensive, you can order it for $65 from ZRT Labs at the links below:

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Take care and please keep us posted.

V/R, Batch

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« Last Edit: Jan 19^th, 2013 at 5:35pm by Batch »

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9thNerve

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Re: 123 Days PF And I Think I know Why
Reply #1187 - Jan 21^st, 2013 at 11:05pm

Hi Batch, I have been following your posts for a couple of years. Have had CH for 2 1/2years, longest time without a headache has been 19 days. All this began from pain of a compressed 9th cranial nerve, had subsequent surgery to decompress nerve. My neurologists (yes, have 2 monitoring me!) say the migraines are from hyper stimulated nervous system from so long of chronic unrelenting pain. Well, now the nerve issue is resolving but still have my life compromised from 3 varietals of migraines..cluster, old-fashioned with aura triggered by bright lights, and another random crushing type migraine. THe last 2 respond well to imitrex but the cluster is a beast of its own. I have tried : high dose B vits,magnesium,5000iu D3,2 grams Omega 3, Folic Acid 1000mg,O2,caffeine, etc on and on. Ready to up my D3 and add NAMENDA to the mix. Has anyone tried it with success? I developed severe,permanent neuropathy in my extemities from the Topomax. Sumavel (needless injectable imitrex) and Tordal injectable give good relief of most of my migraines but one is restricted on how frequent that can be used ie 4x/month max.. Doesn't help much when the headaches are daily.
Well, I appreciate having this blog for support. You think it sucks for you but when you read this, you realize that no matter how bad I have it, someone has it worse.

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1188 - Jan 22^nd, 2013 at 1:11am

Hey 9thNerve,

Thanks for the post... It sounds like you've been through the laundry list of standards of care CH medications and some of the homeopathic remedies as well...

Namenda (memantine HCl) is a new one on me... There are several posts about namenda here at CH.com, but I don't recall any CH'ers report taking it with the anti-inflammatory regimen or report it in their survey comments. I assume it was prescribed for your migraine headaches...

Let's start with the lab test for 25(OH)D. Have you seen your PCP or neurologists about the lab test for this metabolite of vitamin D3? Knowing your 25(OH)D status can be a big help in determining how long it's going to take for a favorable response to this regimen.

If you have, what were the results? If not, it's a good idea to put this lab test on your list of things to do...

The complete list of supplements in the Anti-Inflammatory Regimen along with the dosing guide, vitamin D3 dosing strategies, drug interactions and contraindications can be found at the following link:

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So far the raw efficacy of this regimen (for episodic and chronic CH'ers combined) is at 79% and growing...

The green zone for the 25(OH)D reported by CH'ers who have had a favorable response to this regimen is 60 to 110 ng/mL, or a target serum concentration of 85 ng/mL.

That usually requires a vitamin D3 dose of 10,000 IU/day along with Omega 3 fish oil and vitamin D3 cofactors... but many CH'ers use the accelerated dosing strategy to go pain free a lot faster then drop back to 10,000 to 15,000 IU/day as a maintenance dose.

Just be aware that too many neurologists are not fans of vitamin D3 therapy and tend to discourage their patients from taking it. Stick to your guns.

As a side note... the anti-inflammatory regimen is proving to be very effective in preventing migraine headaches... My wife was a 20 year chronic migraineur with monthy attacks coming like clockwork until she started this regimen two years ago... Hasn't had one since

Shoot me a PM if you have questions...

Take care and please keep us posted.

V/R, Batch

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« Last Edit: Jan 22^nd, 2013 at 1:15am by Batch »

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djphrenzy

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Re: 123 Days PF And I Think I know Why
Reply #1189 - Jan 22^nd, 2013 at 10:39am

I love my PCP. Called yesterday and left a message with his Medical Assistant:

"Hi. I need Dr. Luna to order a 25-Hydroxyvitamin D screening for me."

Got a call this morning "Steve, your requested order has been submitted. You can go to any CompuNet Testing Facility and they will have the order in their computer, or just stop by the office."

Good service.

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djphrenzy

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Re: 123 Days PF And I Think I know Why
Reply #1190 - Jan 22^nd, 2013 at 11:43am

Also, two days of "Batch Regimen" and I've had no night time hits (my pattern has been two hits one night, none the next night during this cycle), and I just had a little baby K-3/4 daytime hit. That's new. I usually only have the daytime hits once or twice right at the end of my cycle, which isn't really expected for another couple weeks. Hmmm.... worth noting.

Edit: One more thing to note, I've been struggling with anxiety and depression for years (much more so during the winter months), and perhaps it's just placebo, but I'm starting to feel that burden lifting a little... I felt a little better yesterday, and even better today. Even despite the beast, I feel like I have a little pep in my step. Here's to hoping this trend continues. If it does, I'm going to owe you a beer over Skype, Mr. Batch!

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« Last Edit: Jan 22^nd, 2013 at 11:55am by djphrenzy »

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1191 - Jan 22^nd, 2013 at 1:19pm

DJP,

Looking forward to your Skype call... but a beer isn't really necessary... Just keep the observations on your response to the anti-inflammatory regimen coming... And when you get the 25(OH)D lab test, we'd like to hear the results.

The comments you've posted so fare are consistent with positive/beneficial side effects listed by 56% of CH'ers who have taken the Anti-Inflammatory Regimen Survey.

Thanks again for the update and please keep us posted.

V/R, Batch

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« Last Edit: Jan 22^nd, 2013 at 1:24pm by Batch »

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neuropath

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Re: 123 Days PF And I Think I know Why
Reply #1192 - Jan 23^rd, 2013 at 9:11am

Update on previous post re D3 regimen increasing/altering attack pattern.

Attending a business lunch and dinner 3 days ago and having fish on both occasions, I decided to take the regimen as usual but excluding the Omega 3 on that day, for I had always felt that the Omega didnt sit well in my stomach after taking it, after experiencing the increased CH activity and after having consumed enough natural Omega 3 that day.

The following day, for the first time in my current cycle, I started converting from 4-6 KIP7s a day to very nasty shadows (in other words a good day at the office). The day thereafter (no Omega 3) shadows lessened and I had 1 KIP3 (done in 1 min on O2). Today activity has lessened even further.

Early days, but there definitely is a change for the better.

Perhaps something to consider for people for whom the regimen hasnt worked yet. Underlines Batch's suggestion of going through a process of elimination to establish if any of the ingredients is obstructing the overall success due to intolerance or other factors.

My annual high cycles have been occurring with clock work precision and although I am now 2/3 through my sentence, it would normally not be for another 2-3 weeks until I would see light at the end of the tunnel.

Planning my next fish meal and will keep you updated on progress. Hopefully soon I can have a Puligny-Montrachet to go with it....

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1193 - Jan 23^rd, 2013 at 12:45pm

Hey Neuropath,

Thanks for the update... Have you had your 25(OH)D tested recently? If so, what was the serum concentration?

This lab test is important in order to correlate any changes in your CH symptoms with your increase in 25(OH)D concentrations while on this regimen.

Take care and please continue to keep us posted.

V/R, Batch

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« Last Edit: Jan 23^rd, 2013 at 5:48pm by Batch »

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Re: 123 Days PF And I Think I know Why
Reply #1194 - Jan 23^rd, 2013 at 5:43pm

I have been suffering bad for the past 4 months. I have tried everything including mushrooms, seeds and all conventional therapies. I have been on the Vit D regimen now for 2 weeks. 2 weeks ago my vit D level was 48, hopefully I will get to the therapeautic range soon. Yesterday i got desperate and had Botox injections done and last night I was pain free and slept 10 hours. Both Botox and Vitamin D inhibit CGRP and I hope this continues to work. Thanks Batch for all your research and insight.

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slacker032

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Re: 123 Days PF And I Think I know Why
Reply #1195 - Jan 23^rd, 2013 at 6:48pm

Hey Batch,

So I finally took a 25(OH)D test and got my results back today. My levels are insanely high (171.2 ng/mL) but my cycle persists. This has been my regimen for a past few months:

After breakfast:
- D3 10,000 IU
- Omega-3 Fish Oil 1000mg

After lunch:
- Omega-3 Fish Oil 1000mg

30 minutes before dinner w/ lemonade:
- Calcium Citrate 1000 mg (includes D3 250 IU, Magnesium 80 mg, Zinc 7.5 mg, Copper 1 mg, Manganese 1 mg, Boron 0.5 mg)
- Magnesium 400 mg

After dinner:
- D3 10,000 IU
- Omega-3 Fish Oil 1000 mg

Once a week:
- D3 50,000 IU (10,000 IU at a time)

I actually bumped my daily D3 intake from 20,000 to 25,000 IU about 5 days ago since my cycle was reaching peak intensity. Also, added a baking soda tonic 4 times a day.

So per my results, I should scale down my D3 intake right? Could the high 25(OH)D levels actually be making it worse?

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« Last Edit: Jan 23^rd, 2013 at 6:50pm by slacker032 »

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1196 - Jan 23^rd, 2013 at 7:08pm

Hey Kev,

Thanks for the post and welcome aboard CH.com. Welcome also to the anti-inflammatory regimen.

10 hours of uninterrupted pain free sleep in the middle of a cluster headache cycle is hard to argue or complain about no matter how or why it happened.

The average 25(OH)D response to a 10,000 IU/day dose of vitamin D3 is illustrated in the top curve in following chart.

It assumes a starting 25(OH)D serum concentration of 27 ng/mL. If you shift the starting point up to the 48 ng/mL your test results indicated two weeks ago and leave the final concentration at the 140 day level as shown, two weeks at 10,000 IU/day vitamin D3 should have you at or near a 25(OH)D serum concentration of 60 ng/mL.

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Please understand the word "average" and the term "1 SEM" as used in this chart. Average is a measure of the "middle" or "typical" value of a data set. It is thus a measure of central tendency.

The standard error of the mean (1 SEM) is the standard deviation of the sample-mean's estimate of a population mean. (It can also be viewed as the standard deviation of the error in the sample mean relative to the true mean).

So much for statistics... All this really means is your response to this regimen should be close to the curves illustrated in this chart..

That said, based on the data collected in the online survey of CH'ers who started this regimen... 60% of them responded to this regimen with a favorable response within the first 5 days after starting it... We've also a growing number of CH'ers who required vitamin D3 doses of 20,000 IU/day plus a weekly loading dose of 50,000 IU to achieve a favorable response.

The bottom line... it may help improve your response to this regimen by increasing the vitamin D3 dose to 20,000 IU/day and add the weekly 50,000 IU loading dose...

Talk with your PCP about this and try to get tested again for your 25(OH)D in a couple weeks.

Take care and please keep us posted.

V/R, Batch

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« Last Edit: Jan 23^rd, 2013 at 9:33pm by Batch »

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neuropath CH.com Veteran Offline Same Hit, Different Day Posts: 218	Re: 123 Days PF And I Think I know Why Reply #1197 - Jan 24^th, 2013 at 1:00am Just got my D3 levels and they are entry level green zone at 65, after one week of 30,000 IU. 3rd day with milder shadows than yesterday. Do you suggest staying at 30,000 for a while longer?
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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1198 - Jan 24^th, 2013 at 5:30am

Hey Neuropath,

Thanks for the update and 25(OH)D lab results. It appears you're still below the pain free tipping point.

Staying at a vitamin D3 dose of 30,000 IU/day for another couple weeks would appear prudent... At that point you can drop back to a maintenance dose of 15,000 IU/day.

A vitamin D3 dosing schedule like this should elevate your 25(OH)D reserves comfortably into the pain free green zone and keep you there. It will take another 3 to 4 months for your 25(OH)D serum concentration to reach equilibrium and stabilize.

As you're still experiencing cluster headache symptoms at a 25(OH)D serum concentration of 65 ng/mL, your effective therapeutic level of this metabolite is likely near 85 ng/mL

Be sure to see your PCP or neurologist for the 25(OH)D lab test after two weeks on the maintenance dose to check your progress.

After that, a 25(OH)D lab test every 6 months should be more than sufficient unless your cluster headaches return.

My wife has been taking the anti-inflammatory regimen with 15,000 IU/day vitamin D3 for over two years... Her 25(OH)D serum concentration has remained steady around 100 ng/mL.

She doesn't have cluster headaches, but she was a chronic migraineur for over 20 years... She hasn't had a migraine since starting this regimen. She feels great, looks great, and has more energy than I've seen in many years... She also kicked the heck out of 75 in December...

Take care and please keep us posted.

V/R, Batch

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Batch

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Control The Beast With
O2 & D3 You Must

Posts: 3706
Bremerton, WA
Gender: male

Re: 123 Days PF And I Think I know Why
Reply #1199 - Jan 24^th, 2013 at 4:01pm

Hey Slacker,

Sorry I missed your post yesterday... However, as I've responded to your PM on this topic I'll try to summarize my PM to you in this post so readers will understand what appears to be happening with you.

For starters, 25(OH)D serum concentrations as high as your's are not uncommon when using an aggressive vitamin D3 dosing schedule... and if you are using one of these dosing schedules, make sure you see your PCP or neurologist to have your 25(OH)D tested after 30 days. You did this so good on you...

It's also a good idea to have your total calcium and parathyroid hormone (PTH) serum concentrations tested at the same time.

A 25(OH)D serum concentration at 171.2 ng/mL is below the lower threshold for vitamin D3 intoxication and no where near the record...

I've been tracking three chronic CH'ers who were using a similar aggressive vitamin D3 dosing schedule while under their physicians supervision... All three tested above 200 ng/mL after roughly 45 days on this dosing schedule... one was at 250 ng/mL.

Fortunately, their physicians kept their cool and had them lower their vitamin D3 dose to 10,000 IU/day or stop the vitamin D3 for a week then restart it at 10,000 IU/day. All three were below 100 ng/mL a month later.

Their physicians also had labs for total calcium and PTH done on these three... Their results were all normal so there was no clinical indication of vitamin D3 toxicity as indicated by higher than normal total calcium levels.

We've also had a few CH'ers with 25(OH)D serum concentrations above 100 ng/mL who like you were still getting hit. The good news is their livers are working just fine metabolizing vitamin D3 into 25(OH)D.

It's the second phase of vitamin D3 metabolism where 25(OH)D is metabolized into 1,25(OH)2D3, (calcitriol), the active hormonal metabolite of vitamin D3 that may need attention. Calcitriol is the active hormonal metabolite of vitamin D3 that appears to be responsible for preventing cluster headache.

There are two paths 25(OH)D can take to be metabolized into 1,25(OH)2D3. One path involves the kidneys. The other path takes place outside the kidneys in nearly all types of body cells throughout the body. This route is called the peripheral or autocrine path as it enables genetic expression. This metabolic path also requires retinol (vitamin A) to complete the metabolism of 25(OH)D into calcitriol at the cellular level.

The kidneys require PTH in order to metabolize 25(OH)D into the active hormonal vitamin D3 metabolite calcitriol. The calcitriol generated by the kidneys is responsible for pulling calcium from the gut and pushing it into the blood stream.

What appears to be happening in your case is vitamin D3 metabolism may be running into calcium homeostasis and the result is less calcitriol being produced.

This condition will arise when total calcium serum concentrations rise towards the upper limit of the normal reference range.

Calcium levels near the upper limit of the normal reference range signal the parathyroids to slow or stop production of PTH. This in turn slows metabolism of 25(OH)D into calcitriol so less calcium is absorbed from the gut and total calcium serum concentration drops.

The reverse of this process occurs when the total calcium serum concentration falls towards the lower limit of the normal reference range. When this happens, the parathyroids increase output of PTH, more 25(OH)D is metabolized into cacitriol, more calcium is absorbed from the gut and as a result, total calcium serum concentrations rise... This overall self-regulating process is called calcium homeostasis as it maintains total calcium serum concentrations in a narrow range.

The net result is calcium homeostasis may be preventing the kidneys from producing sufficient calcitriol to prevent our cluster headaches even though 25(OH)D levels are in the green zone or above.

Data collected so far indicate there are two things we can do to increase calcitriol levels... The first is to cut the intake of calcium supplements so less calcium is absorbed from the gut. The second is to start taking vitamin A to increase the peripheral production of calcitriol. I take a Centrum Silver tablet to get nearly all of my vitamin D3 cofactors including vitamin A. There are other similar formulations like the Safeway brand, Senior 50 + formula.

I realize all this can be confusing but our bodies work in strange and wonderful ways when given the opportunity. Please feel free to ask questions if you have them and I'll do my best to answer them.

Take care,

V/R, Batch

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« Last Edit: Jan 28^th, 2013 at 11:09am 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

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