D3 regimen specifics

[Stephen]

Hi all - longtime CH sufferer (11 years), first time posting. My cycles have progressively gotten longer and had more headaches during each cycle over the years. I’m currently 3 months into a cycle and still getting 3-13 headaches per day. Historically, oxygen has worked great and I’ve managed by always keeping oxygen close by wherever I go. Now I have 1-2 headaches per day that oxygen isn’t helping, though luckily sumatriptan injections are still doing the trick. I have never tried MM or the D3 regimen but now seems like a good time to start. Also, I take 75 mg nortriptyline a day and have taken this drug for a few years and seems to be a bit better than verapamil for me
 

The supplement instructions aren’t totally clear to me (I found the wiki but the length of the file and posts since then have me a bit confused) and I was hoping someone could check my understanding below so I am taking each step correctly. 
 

1. Go to a lab and ask them to test serum D3 levels

2. if they are above 45 then no need for the regimen? If they are lower, then start regimen

3. Take bio tech d3-50 every day for 2 weeks. Also during these 2 weeks take 1 mature multi a day, 1000-2400mg fish oil a day, 400-800g magnesium a day, mk-4 vitamin k 1000 a day, mk-7 vitamin k 200 a day, 1 vitamin b 50 a day

4. after 2 weeks do all of the above except bio tech d3-50 is just once a week

5. after 3 months drop the vitamin b 50

does that all sound right? Also, if I can only find some of the above supplements today, should I go ahead and start with some of them or wait until I get all of them? Also, how often do I need lab work done after this? I haven’t taken supplements in the past

 

[CHfather]

1 hour ago, Stephen said:

1. Go to a lab and ask them to test serum D3 levels

2. if they are above 45 then no need for the regimen? If they are lower, then start regimen

3. Take bio tech d3-50 every day for 2 weeks.

I wish I could respond to the other things you ask about, but I can say about these three that to the best of my knowledge, Batch (xxx) says you can start the regimen before being tested, and you should start "with a few doses at 10,000IU per day" (his words), because of the small risk of a negative reaction to D3.  I'm not sure where your point 2 comes from. If you're having CH attacks, then your D level is too low.  Batch has written: "CH'ers who have used this regimen and experienced a significant reduction in the frequency and severity of their CH or gone pain free and then had this test have had an average 25(OH)D serum concentration of 81.4 ng/mL. (203.5 nmol/L), min = 34.0 ng/mL, max = 149.0 ng/mL." The specifics of these ranges might have changed since he wrote that, but you can see that many people needed to get considerably higher than 45 ng/ml to get relief.

1 hour ago, Stephen said:

luckily sumatriptan injections are still doing the trick

If you are using the full 6mg injector each time, you shouldn't (or at least needn't) be: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

 

[Stephen]

Thanks CHfather! My point 2 was just that I wasn’t under the impression that a full 100% of CH people have low D levels. And therefore if mine wasn’t low, the D3 regimen would be pointless. That could very well be wrong but that was how I understood it. On the injections I use a 4mg injector.

[CHfather]

As Batch's statistics show, low or not low isn't the right criterion for D3 effectiveness.  Sometimes you have to get into the "high" range for it to be effective. 

(4mg is better than 6, but 4 is still probably twice what you need to stop a CH attack. If you're not having side effects and you have plenty of injectors and cost is not an issue and you're not using too much per day, no problem . . . )

[xxx]

He Stephen,

You can download the posted version of this treatment protocol from VitaminDWiki.com with the following link.  I've also sent you a PM.

http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

Readers of my webpage at VitaminDWiki.com have downloaded 64,576 copies of this treatment protocol since it posted four years ago on 21 Jan, 2017.

Take care and please keep us posted.

V/R, Batch

[Stephen]

Hi Batch - I started the D3 regimen on 1/25. I did not get blood tested prior. I am taking all the supplements listed except zinc, boron, and vitamin a because my cvs didn’t have those and my doctor told me to take those supplements directly and not take multi vitamin. I was having 2-8 headaches a day in the week prior to starting. Today is 2/2 so just over a week in and I haven’t had a headache in 48 hours for the first time in 3 months. I’m already at my longest cycle yet so perhaps it’s just coincidence and not the supplements helping, but I’m betting they are helping based on the wiki evidence and the quick change for me. So thank you!!!

[spiny]

Stephen, by bet is on the D3 Regimen. It has done so much for so many!!! My last cycle was 8 months long, all night, every night. That was over 3 years ago now.. First I noticed the ramp up was slowed and the hits were lower on the pain scale. Then they stopped. 

Yes, I do still get the occasional hit. But no cycle!!!!

If you ever want to 'test' the regimen, then stop for two days. That is all that it takes for me to get hit again. Then back on the vitamins and the hits vanish again. 

Congratulations on your new life!  

[tmac]

I've been on the D3 regimen for years.  It has helped quite a bit with shadows and the intensity of attacks.  Recently, I started a cycle again and started taking more D3 than my normal dose.  I've been taking 40,000 IU for a week and things have gotten better, but not gone.  Still have an average of 3 attacks at night, with most easy to abort with O2.  Some take 30 minutes to get rid of.  

Anyway, I was a little worried about my vitamin D levels as I was taking quite a bit.  So, I ordered a test and my results are below.  Should I be worried?  Do I need to reduce my D3 intake?  i'm worried that the pain and number of attacks will increase if I do.

Vitamin D,25  HIGH - Current Result > 150 ng/ml

This was a test done through Quest Diagnostics.

[xxx]

They TMac,

Good questions.  3 CH/night is not good and a 25(OH)D3 serum concentration greater than 150 ng/mL is not a worry by itself.  The goal of the anti-inflammatory regimen is a CH pain free response.  The fallback is a significant reduction in CH frequency from an average of 3 CH/day down to 3 to 4 CH/week as long as oxygen is available.  Given the amount of vitamin D3 you've been taking and your 25(OH)D3 serum concentration is >150 ng/mL, I'll make a SWAG (sophisticated wild-ass guess) you're battling an immune system reaction caused by an allergy. 

An allergic reaction is characterized by the immune system's Mast Cells releasing large amounts of histamine.  Histamine to a CHer is like Kryptonite to Superman, bad news.  In the past, I and many other CHers found a first-generation antihistamine like Benadryl (Diphenhydramine HCL) taken at 25 mg four times a day brought the allergic reaction under control so vitamin D3 could again do its thing to prevent CH.  First-generation (drowsy type) antihistamines like Benadryl (Diphenhydramine HCL) pass through the blood brain barrier to block histamine H1 receptors on neurons and glia throughout the brain.  This is important for CHers as histamine insults neurons and glia in the trigeminal ganglia causing them to express and release CGRP, SP and likely other neuroactive proteins that are responsible for CH pathogenesis.

Benadryl (Diphenhydramine HCL) works well in this role as an antihistamine but with the drawback that it induces drowsiness in many and it's also an anticholinergic (blocks the neurotransmitter acetylcholinesterase).  As  acetylcholinesterase is needed to allow nerve signals to pass from neuron to neuron through nerve synapse, Benadryl (Diphenhydramine HCL) slows down nerve functions.  I suggested the use of Benadryl (Diphenhydramine HCL) be limited to a week to 10 days as it has also been associated with neurodegenerative disorders when taken for long periods of time. 

Fortunately, in early 2019 I began suggesting Quercetin, a naturally occurring plant flavonoid, as an effective antihistamine as it has no time limit on dosing and no anticholinergic properties like Benadryl (Diphenhydramine HCL).  As a side note, Quercetin acts as an ionophore when taken with zinc that allows zinc ions to enter cellular cytoplasm to inhibit virus replication.  Something you should think about with the Wuhan Coronavirus floating around.

Loading? Yes, if I was getting hit like you have, I would start loading vitamin D3 at 50,000 IU/day for at least a week or until I made it through two full days CH pain free then drop back to the previous vitamin D3 maintenance dose at least 10,000 to 20,000 IU/week higher. 

Over the years, we've had a number of CHers with your problem, a high 25(OH)D3 serum concentration and the CH beast is still jumping ugly.  In the past, loading vitamin D3 with a week to 10-day course of Benadryl (Diphenhydramine HCL) worked wonders in getting them back to a CH pain free state. 

Today, many CHers have found loading vitamin D3 and taking Quercetin has similar CH pain free outcomes.  Over the last four months, I've worked with CHers who tried 4-Day "pulsed" loading schedules taking 200,000 IU of vitamin D3 on Day-1 then coasting without any vitamin D3 on Days-2, 3 and 4, taking all the cofactors daily.  They repeat the 4-Day pulsed loading schedules until they experience a CH pain free response or four cycles.  At that point it's prudent to drop back to a vitamin D3 maintenance dose and see your PCP/GP for a set of labs of your serum 25(OH)D3, calcium and PTH.  If your serum calcium remains within its normal reference range, try three more pulsed loading cycles.

If you do the math the 4-Day pulsed loading schedule still works out to an average dose of 50,000 IU/day for 4 days.  They've also upped the Quercetin dose and added Turmeric (Curcumin) and vitamin C.  The dosage here is 3 grams/day each of Quercetin, Turmeric (Curcumin) and Vitamin C with the 3 grams of vitamin C broken up into 3 equal doses taken throughout the day to maintain a relatively constant serum concentration.  There are a couple studies that found vitamin C increased the effectiveness of both Quercetin and Turmeric (Curcumin) when taken together.

Pulsed loading causes a spike in serum vitamin D3 concentration illustrated in the following graphic that increases the osmotic diffusion differential between vitamin D3 in the blood stream and vitamin D3 at the cellular level. 

This increased osmotic diffusion differential results in more vitamin D3 entering cells throughout the body much faster.  Obviously, as CHers we're looking for this increase to occur in neurons and glia within the trigeminal ganglia to bring our CH under control.  If you think this is an extreme vitamin D3 loading dose.  It's not.  There are studies using a single oral dose of 300,000 IU to 600,000 IU vitamin D3 with no adverse effects.

Regarding your lab result for 25(OH)D3.  Quest Diagnostics has two different 25(OH)D3 assay methods.  They've a fast inexpensive automated assay for 25(OH)D3 that tops out at a serum concentration of 150 ng/mL and the QuestAssured Liquid Chromatography Dual Mass Spectroscopy (LC-MS/MS) assay method that reads total 25(OH)D (D2 and D3) up to 512 ng/mL.  If your doctor didn't specify the Quest Diagnostics Test Name: 92888- "QuestAssureD 25-OH Vitamin D (Total), LC/MS/MS assay for 25(OH)D3" in your lab order, you likely got the low cost rapid automated assay.

That said, a 25(OH)D assay >150 ng/mL although not a worry by itself, is meaningless if you're CH pain free.  The important lab assays for you at this point are for your serum calcium and Parathyroid Hormone (PTH).  Did your doctor order these two assays and do you have the results?  As long as your serum 25(OH)D3 is within its normal reference range, there's no hypercalcemia (too much calcium in the bloodstream), a.k.a., vitamin D3 intoxication/toxicity.  This means your 25(OH)D3 is not a worry no matter how high it goes as long as your serum calcium is normal. 

The following 3-year chart of my lab assays for serum 25(OH)D3, calcium and PTH are a good example.  It illustrates my 25(OH)D3 serum concentration has been well above 100 ng/mL, as high as 188 ng/mL and has averaged 150 ng/mL since January of 2019 while my calcium serum concentration has remained within its normal reference range the entire time.  My PCP understands vitamin D3 and calcium homeostasis so has no problem with my 25(OH)D3 serum concentration this high to prevent my CH as long as my serum calcium remains within its normal reference range.  As you can see, it has.

Hope this helps.  Take care and please keep us posted.

V/R, Batch

[tmac]

Batch, thank you for all of this information. I'll try to answer your questions below.

Allergic Response - Yes, I agree and I've been taking 50mg of Benadryl every 4 hours.  I'm even doing this when I wake up with a CH at 2 in the morning.  BTW, the addition of Benadryl every 4 hours was hard to get used to as it initially made me very sleepy. I've since gotten used to it and drowsiness really isn't an issue anymore.  It helps SIGNIFICANTLY with pain during the day. I can't imagine my day without it now. I have heard about the cognitive issues that may be related to long time use, and that does concern me if I am using this for more than a few months.  Right now, I'm at 4 weeks of regular use.

Quercetin - I saw your recommendation on a different post and have been taking a loading dose of 3000mg each day for the last 7 days.  Today, I decreased it to 2000mg. Honestly, I haven't noticed a difference in # of attacks or pain intensity during this time.  If anything, pain has gone up a bit. I've been taking it once a day during lunch with the big handful of pills I take.  I didn't substitute this for Benadryl. Still taking Benadryl every 4 hours.

Quest Test - I ordered the test without my doctor and my guess is that I got the cheap one as it just says > 150. I'll look for the other test. Funny thing is that Quest called me the next day to let me know how "dangerous" it was to have D3 levels that high. 

Calcium & PTH - Never had a test for these, but with the high D3 test results, I think it would be a good idea before I start pulsing at a bigger level. Thoughts?

So here is where I'm at.  D3 works very well. I know that if I stop taking it for 2 days, I have a major increase in attacks and pain level.  This cycle is so much better than 18 months ago when I discovered the regimen.  Pain level is manageable and I can abort most CH's with O2 quickly.  Crappy sleep, but I can deal with that for a few months.  I just want to be safe.  I don't want to overdo the D3 and do damage to my bones and arteries.  Should I get the Calcium and PTH lab test before increasing my D3? Any other suggestions?

[xxx]

Tmac,

Seeing your doctor to obtain lab assays for your serum 25(OH)D3 calcium and PTH is prudent.   As long as your serum calcium remains within its normal reference range and your PTH is in the mid to low normal range, there's no problem no matter how high your serum 25(OH)D3 assay.  I get the same blurb from Quest on my 25(OH)D3 assays.  I think it's computer generated.

It's obvious something is interfering with the vitamin D3 enabled genetic expression that helps prevent your CH.  If it's allergy driven as I suspect, it could be there's so much histamine in your system, Quercetin is ineffective and even Benadryl (Diphenhydramine HCL) isn't all that effective either.   Other sources of interference include anything that causes an immune system response like infections, (bacterial, viral or fungal), some Rx medications, trauma and surgery.

When are your CH occurring?   If they're all at night while sleeping, try sleeping in a leather recliner in your family room.  The rationale...

it could be dust mite poo.  These little beasties have inhabited human bedding for thousands of years.  They don't bite but their poo can be a potent allergen.  Even if your wife wins the Good Housekeeping Seal of Approval, keeping sheets and bedding washed every other day may not be good enough, dust mite poo still gets into pillow and mattress stuffing. 

Accordingly, to reduce exposure, try sleeping in a leather recliner for a couple nights.  A recliner also has the advantage of keeping your head 8 inches above your heart.  Even while sleeping, this will cause your heart to beat slightly faster to pump blood up to your brain. The extra work requires a little extra oxygen so your respiration rate will elevate slightly.  This increases the arterial oxygen partial pressure and reduces your arterial CO2 partial pressure.  Both these conditions help prevent CH.  If your recliner has fabric upholstery, cover it with a plastic sheet.  Dust mites colonize anywhere there are dried skin flakes.

If there's a reduction in CH frequency while sleeping in the recliner, it's time to invest in a Hypoallergenic and dust mite proof mattress cover and new pillows.  Changing filters in the air handler of your heating and cooling system frequently can help cut down on airborne allergens in your home's interior.  

If there's no joy with the recliner, your PCP/GP has several lab tests that should indicate weather or not you have an allergy. If the tests are positive, he should be able to get you a consult with an allergist.

Another way to find out if you're dealing with an allergic reaction is to ask your PCP for a short prednisone taper.  If the pred taper is sufficient to drop your CH frequency, start looking for the cause.  Hope this helps.

Take care and please keep us posted.

V/R, Batch

Edited February 8, 2021 by xxx

[trjonas]

@StephenAwesome post! Love the simplification

@xxxInteresting about the dust mites! I'm allergic to dust so I'm going to order some hypoallergenic and dust mite proof bedding.