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The D3 regimen is not working... again (Read 12123 times)
Visperas
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The D3 regimen is not working... again
Apr 8th, 2017 at 9:34pm
 
Hi guys!

I think I've written a thread like this once or twice before. I've been taking the D3 regimen for a few years now and overall I'm really happy with it but from time to time it stops working and this is one of those times.

Previously, it looks like the cause was that I was sick and my immunologic system was using all the D3 but I don't think that's the case this time. I've been having daily headaches for 5-6 months and I haven't been really sick during that time.

This is what I'm taking daily:
-20.000 IU D3
-1200 mg Fish Oil
-500 mg Magnesium Citrate
-10.000 IU Vit A
-500 mg Vit C
-200 mcg Vit K2
-1 pill of Complete Men's Health Senior Multivit

Plus 240 mg of Verapamil ER

I'm hoping that for some reason my D3 levels are low and I can solve this by doing big D3 doses for a couple of days. I'm getting a blood test results in a couple days but in the meantime I have a few questions that hopefully will help me deal with this.

- Lately I've been using cheap brands of a few of those vitamins, including the D3, specifically Kroger. Could that be the issue? Is it better to buy the proper brands like Nature Made and so on?

- About the verapamil. It used to work better to complement the D3. Is the efficiency reduced over time? Should I increase the dosage?

- Lately, I've been having peaks in the amount of attacks. I usually have one per day but once a week or so I get 5 or 6. Why is that?

- When I have one of these bad days, how far back should I be looking for triggers? I know that with alcohol it used to be a few hours but are there other foods or substances that take longer than that to trigger an attack? Maybe a day or two?

Thanks for reading!

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« Last Edit: Apr 8th, 2017 at 10:03pm by Visperas »  
 
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Re: The D3 regimen is not working... again
Reply #1 - Apr 9th, 2017 at 12:18am
 
Hi Visperas,

If nobody else is going to take this one... I'll put in 2 cents worth!

This happens to me from time to time too, so I know what you're going through. It's no fun to have placed bets on the regimen (Having a life outside of CH) and then fall out of remission.

I'm sure Batch will chime in and probably run through the usual suspects... The 25(OH)D serum level test result will be perhaps a good start toward seeing what is going on, but there will be things you can do in the meantime I presume others will chime in with.

The addition of the 90 day course of B-50 Vitamins may help, as would the Diphenhydramine if you're having an allergic reaction, either apparent or sub-clinical. Unfortunately, I can't tolerate Diphenhydramine, even though I know it is hay fever or pollen allergy that pulls D3 from my system and CH remission collapses, but I sit my 25(OH)D3 level around 200nmol/l and it leaves a little room to ramp up D3 dosing when such an allergic reaction comes along. I throw down a 50,000IU loading dose at the first sign of trouble, and follow up with about a week of 20,000IU D3, the fall back to my 10,000iU per day, it works for me.

There's substantial room there to up the fishoil, and the Magnesium, maybe even the Vitamin C, but I would not offer advice on that as I don't know what the benefits would be.

I did have a lot of issues with different D3 brands. One study I've seen a few years ago suggests D3 labelling can vary from what's actually in the bottle substantially from 8%-146% (from memory, sorry cannot locate the study now), in the same bottle in some instances. I took truckloads of "Now foods" 10,000IU D3 for a few years and could not get my 25(OH)D3 serum level about about 160nmol/l, nor could I achieve CH remission.

Switched to another brand "Healthy Origins" out of the UK, this one here: (not an ad)
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With this one I've had 2 years consistent 25(OH)D3 results, and I was able to stay on 10,000IU per day for CH remission, only upping the dose to 20,000IU when I either fell below 200nmol/l or allergy/colds/injury became an immune system consumer for me. That's not very scientific, but it took 4 or 5 brands for me, before I found one that was both affordable and able to offer consistent serum lab test results over 200 nmol/l in my case.

Depending on which part of the world you're in, it may be allergy season as it currently is in the Southern Hemisphere. That may be a consumer and the reason why you're seeing an up-tic in frequency.

I'm unsure how the D3 regimen interacts with verapamil, but Batch has directions on his D3 regimen and dosing schedule thread concerning Verapamil.

If there's pollen around, or it's Autumn/Fall where you are, it may be sub-clinical allergy. I'm sure Batch will be along to help when he sees the post.

The good news is, there's a lot of info here on the site that addresses what you can do next, hopefully achieving CH remission. For some of us, this regimen does take a lot of tweaking and vigilance in doing so, to get it just right!

Good luck with it.

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Re: The D3 regimen is not working... again
Reply #2 - Apr 9th, 2017 at 5:43am
 
Hey Visperas,

Thanks for the update and sorry the beast is back jumping ugly... 

Nice job Brian... and good suggestions... I've been wrapped around the axle trying to get two manuscripts ready for submission and publishing for the last few days and finally came up for air...

Visperas...  Odds are you're also battling an allergic reaction.  When they occur, all bets are off as nothing really works to prevent CH...

When this happened to me... and it did during the March, 2015 heavy pollen fall, I I took a 50,000 IU loading dose of vitamin D3 for two days and increase my maintenance dose to 20,000 IU/day.  Doing this helped, although it wasn't totally effective.

Experience gained from personal experience and from other CHers with this problem over the last two years, tells us the first step is to treat a possible allergy.  I've found 25 mg/day to 50 mg/day Benadryl (Diphenhydramine HCL) helps send the CH beast running in 12 to 36 hours. 

Diphenhydramine is a first-generation antihistamine that crosses the blood brain barrier to block H1 histamine receptors on neurons throughout the brain and in particular, the hypothalamus and trigeminal ganglia.  Be careful if you need to drive as Benadryl will make you drowsy. If you need to drive during the day take the 50 mg in the afternoon/evening when you're home for the day. 

An alternative to the Benadryl tablets is Children's Allergy Medicine Liquid Benadryl (Diphenhydramine HCL).  12.5 mg (5 mL in the measuring cap) twice a day AM and PM worked just fine for me and produced less drowsiness. Try to hold the liquid in your mouth for at least 4 to 5 minutes swirling it between cheeks and gums and under the tongue.  It's very sweet...

Continue the Diphenhydramine for 7 to 10 days or until the anti-inflammatory regimen starts working again to prevent your CH for at least thee to four days.  If there's no joy after 7 to 10 days, it's unlikely an allergic reaction is the problem so I would discontinue the Diphenhydramine.

The next step is to start a course of vitamin C.  I take 1000 mg every two hours throughout the day.  If there's no joy with the vitamin C, I lower the dose to 2000 mg/day, (1000 mg twice a day AM and PM).

The third step I take is to start a course of probiotics.  I take a name brand with the best bang for the buck... i.e., the most live cultures per capsule at the lowest cost per capsule.  I've been taking Nature's Bounty's Ultra Strength Probiotic 10.  Continue the probiotic as directed on the back label until the bottle is empty.

The fourth step is to start curcumin at 500 mg/day.  Some of the better brands contain a pepper extract to improve absorption.

If the CH beast is still jumping ugly after all that, please let me know. There are additional steps we can take.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Apr 9th, 2017 at 5:50am by Batch »  

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Re: The D3 regimen is not working... again
Reply #3 - Apr 9th, 2017 at 3:22pm
 
Thanks CH Brain and Batch!

I don't have any obvious allergic reaction but I know that might still be an issue for the CH and D3. I'm gonna follow the steps in Batch's post and will keep you updated.

Besides going PF I would love to know what is going on so I can be more autonomous in treating the CH by myself. So, I'm gonna take loading doses for a couple days and I'm gonna go buy the Benadryl right away.

Since it just makes sense that more expensive brands are better, I'm gonna start buying proper vitamin brands instead of the cheapest ones aswell. Does that make sense, Batch?

Also, what's your take on the Verapamil?

Thank you again and will report back.
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« Last Edit: Apr 9th, 2017 at 5:11pm by Visperas »  
 
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Re: The D3 regimen is not working... again
Reply #4 - Apr 16th, 2017 at 12:06am
 
Hi guys,

Long story short, I'm still being hit. My blood test was taken on April 3rd and it showed 144 D3, 106 Calcium and 8 PTH. On April 9th, I started taking the 50 mg of Benadryl every night and took a 30k D3 loading dose on top of my daily 20k. I took the same loading dose the day after that and a +10k the next day.

I also started taking baking soda with my water. I feel like I'm trying many things at the same time and I don't know if that might be counterproductive.

I assume the loading dose should've worked by now if that was the issue. Also, the D3 levels were around 130 back when the D3 regimen was working at its best. Is it possible that having a too high D3 level doesn't help?

It hasn't been 7 days of Benadryl yet so I'm gonna keep taking it for a few more days but it's not looking good.

What should I do? Start with the vitamin C course? Wait until 10 days of Benadryl have passed? How do you do the VitC course exactly?

Also, I'm still taking the 240 ER Verapamil. Any insight on that? Should I take more? Less?

Finally, what about the triggers? Is it possible that something triggers an attack 12 hours or a day later?

Thanks!
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« Last Edit: Apr 16th, 2017 at 12:08am by Visperas »  
 
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Re: The D3 regimen is not working... again
Reply #5 - Apr 16th, 2017 at 3:37am
 
Hey Visperas,

Sorry the CH beast is still jumping ugly.  It appears you are doing nearly everything I would do to get your CH under control. 

I don't think too much vitamin D3 or a 25(OH)D serum concentration of 130 ng/mL is too high as long as you're getting regular labs to ensure your serum total calcium is within its normal reference range and your PTH is low. 

In 2016, I ran my 25(OH)D up over 167 ng/mL for over two months to get through the heavy pollen season.  I had my serum calcium and PTH tested monthly while at that 25(OH)D serum concentration.  My serum total calcium stayed well within its normal reference range and my PTH was near the low end of its normal reference range as expected.

It can take 2 to 3 days to as long as a week before some CHers start responding to Benadryl.  If there is no joy after 10 days, discontinue taking it.

The brand of vitamin D3 could be the problem, but you won't know if that's the case until you get the lab for 25(OH)D.  I'd suggest you ask your PCP for the lab tests of your total calcium and PTH as well. 

I would go ahead and start the course of vitamin C at 1000 mg every two hours throughout the day.  If there's no joy after a week of vitamin C at this dose, I would drop it to 2000 mg/day and start a course of curcumin at 500 mg/day with meals.

I would also double the Omega-3 fish oil dose.  That has proven effective for a few CHers battling problems like yours.

As far as the verapamil dose goes... You'll need to talk with your doctor about that.

I would also start the vitamin B 100 complex.  I spoke with Dr. Stasha Gomenak at the Vitamin D Workshop and she now has her headache patients taking it for longer than three months.

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

V/R, Batch
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Re: The D3 regimen is not working... again
Reply #6 - Apr 16th, 2017 at 11:53pm
 
Ok. I started the VitC course and will keep taking the Benadryl for a few more days.

My blood test showed 106 Calcium and 8 PTH which I think are safe numbers for the D3 but like I said, I already did pretty hefty loading doses and that didn't reduce the attacks.

I will get the B100 complex and start taking it.

My question about the verapamil is mainly if it interacts with the D3 in some way.

I will report back. Thanks!!
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Re: The D3 regimen is not working... again
Reply #7 - Apr 17th, 2017 at 1:53pm
 
Vispares,

The vitamin B complex should help.  I spoke with Dr. Stasha Gomenak at the 20th Vitamin D Workshop in Orlando earlier this month.  She now suggests vitamin B 100 full time for some of her headache patients.

Regarding veratpamil, We haven't seen any indications of a problem between this regimen and verapamil.  Most CHers usually stop taking the verapamil as it wasn't working to prevent their CH anyway.

Are you taking any other Rx medications for other medical conditions?

Take care and please keep us posted.

V/R, Batch
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Re: The D3 regimen is not working... again
Reply #8 - Apr 17th, 2017 at 2:40pm
 
Vispares,

I'm a chronic sufferer and I take a Vitamin B Complex every day in addition to Batch's Anti-inflammatory Regimen.

Peter.
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Re: The D3 regimen is not working... again
Reply #9 - Apr 24th, 2017 at 2:19pm
 
No, I'm not taking any other Rx medication.

I stopped taking the Benadryl on the 18th. The 20th I added the Super B Complex and was still taking the VitC course when I had 3 PF days. Unfortunately, yesterday it came back and tonight I was hit again.

I'm not sure what those PF days came from but they felt great. I haven't had 3 PF days in a while now. I'd say maybe it's the VitC but I've been taking 4 or 5k daily for around 8 days and I'm not sure if I should keep taking it like that or not.
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Re: The D3 regimen is not working... again
Reply #10 - Apr 25th, 2017 at 1:01am
 
Visperas,

I'd stick with the vitamin C.  I'd also double the Omega-3 fish oil and try another 50,000 IU loading dose of vitamin D3.  I suspect you're at the tipping point of going and staying pain free...  We just need to fine the right combination of nutrients.

The return of your CH could be the result of the Benadry (Diphenhydramine HCL) clearing your system.  Try another two days to see what happens.

Take care and please keep us posted.

V/R, Batch
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Re: The D3 regimen is not working... again
Reply #11 - Apr 26th, 2017 at 1:28am
 
Ok. I'm taking 2400 mg of Fish Oil, 1440 Omega3 Fatty Acids. Yesterday I took the 50k loading dose and 50mg Benadryl, which I will take again tonight.

I will also keep taking the Vit C every 2 hours for a while and see what happens. How long do you think that I should keep taking it?

So, far I've had a bit over around 40 hours PF. So far so good. I will report back soon.
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Re: The D3 regimen is not working... again
Reply #12 - Apr 26th, 2017 at 10:58am
 
Visperas,

Wonderful news!  40 hours CH pain free is a great start!  I wouldn't change anything at this point.  One more 50,000 IU loading dose then drop back to a maintenance dose of 10,000 IU/day. What is your weight and height so we can adjust the maintenance dose accordingly.

I'd also stay at 50 mg/day Benadryl (Diphenhydramine HCL) for the rest of the week then you can discontinue.

I'd continue the present dose of Omega-3 fish oil as well.

There's no reason to stop the vitamin C at the present dose for now...  Be sure to drink at least 2 liters of water a day. That will help with all the other micronutrients. 

As a side note, Dr. Linus Pauling took 12,000 mg/day (12 grams/day) of vitamin C and 1000-2000 mg/day of the amino acid Lysine as a cardiovascular disease preventative for the last 30 years of his life.  If he felt a cold coming on he upped the vitamin C dose to 40,000 mg/day.

He had many critics of his vitamin C therapy... He also had two individual Nobel Prizes, one in Chemistry and the other in Nuclear Proliferation. That's two more Nobel prizes than any of his critics and when he died at 93, he had outlived most of them.

Once you've been pain free for a couple weeks, you can drop the vitamin C down to 2,000 mg/day.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Apr 26th, 2017 at 11:12am by Batch »  

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Re: The D3 regimen is not working... again
Reply #13 - Apr 26th, 2017 at 9:54pm
 
Alright. I'm taking another 50k loading dose right now. I'll keep taking the Benadryl until the end of the week and will keep the current fish oil dose as is as part of the regimen.

Roger on taking the VitC until I'm 2 weeks PF. Also, should I make the 2k Vit C part of the regimen moving forward?

As far as D3 goes, I've been taking 20k as my maintenance dose and my D3 levels never went super high. The last one was 144. My height is 5'09'' and my weight is 154 lb. What do you think?

Thanks again Batch!
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Re: The D3 regimen is not working... again
Reply #14 - Apr 27th, 2017 at 12:08am
 
Visperas,

SLAP - Sounds Like A Plan...  Regarding the vitamin C, I think 2000 mg/day is prudent. That's what i take.  Here's why...

Of all the animals in the Animal Kingdom, only humans, the great apes, some simians, some fish, some bats and guinea pigs cannot synthesize vitamin C...  All the rest synthesize all the vitamin C they need. 

Of all the animals in the Animal Kingdom, only humans, the great apes some simians and the guinea pig have cardiovascular disease...  Does that give you reason enough to take 2000 mg/day vitamin C?

Regarding your maintenance dose of vitamin D3. Be sure to see your PCP for labs of your serum 25(OH)D, total calcium and PTH at least every six months.  You need to ensure your serum total calcium stays within it normal reference range and your PTH stays low. 

At some point in the future, when you feel comfortable, try to taper the vitamin D3 dose to bring your serum 25(OH)D under 100 ng/mL.  If the CH beast starts jumping ugly when you do that, go back up on the vitamin D3 dose until you stay CH pain free.  You may be one of the CHers who needs a higher serum concentration of 25(OH)D to stay CH pain free.

Take care and please keep us posted.

V/R, Batch
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Re: The D3 regimen is not working... again
Reply #15 - May 1st, 2017 at 7:15pm
 
After a week with only a couple shadows, today I got hit again. Still, it's a very good improvement and hopefully it means that I'm in the path of full PF.

I'm gonna keep taking big amounts of VitC for a while longer but I wonder if I should do the same with the Benadryl. In theory I should be stoping it right about now since I've been taking it for 3 weeks more or less.
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Re: The D3 regimen is not working... again
Reply #16 - May 1st, 2017 at 10:48pm
 
Hey Vispares,

Thanks for the update and sorry we haven't got you totally CH PF...  What we're looking at using Benadryl (Diphenhydramine HCL) is like playing "Whack a Mole." 

If the H1 histamine receptor is already occupied by a histamine molecule, the Diphenhydramine molecule likely bounces off the occupied H1 receptor.  That means we need to maintain a serum concentration of Diphenhydramine at a higher concentration than the histamine in order to have a higher probability the H1 histamine receptor is filled by a Diphenhydramine molecule rather than a histamine molecule...  Accordingly, if you don't need to drive you can take 50 mg of Diphenhydramine in the morning and another 50 mg in the evening for a couple days to see if that has an effect in lowering the frequency of your CH attacks.

Bottom line... this could take longer than expected so stay on the Benadryl.  I'd also stick with the vitamin C at 1000 mg every two hours throughout the day...  This is also very safe.

Another thing to try is a simple saline nose spray 3 to 4 times a day to rinse any allergens out of your nasal passages.  Upping the Diphenhydramine concentration and lowering the histamine concentration should do the trick...

You can also try vitamin D3 sublingual... i.e., pop the daily dose of vitamin D3 softgels between your back teeth and swirl the contents under your tongue and between your cheeks and gums for 3 to 5 minutes without swallowing...  Doing this will get the vitamin D3 directly into your bloodstream without the 12 hour delay or loss due to passing through the GI tract.

I'm waiting for my latest labs for 25(OH)D, calcium and PTH.  The did the blood draw last Thursday but needed to ship the samples down to Quest Diagnostics in       San Juan Capistrano, CA for assay and analysis.

Take care,

V/R, Batch
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Re: The D3 regimen is not working... again
Reply #17 - May 25th, 2017 at 2:02pm
 
Hi!

The last few weeks I've taking the 50mg of Benadryl and the course of Vit C and I have only been hit 4 times and only when testing my limits and triggers. Today, I'm stopping the Bendaryl and the Vit C course but I'm gonna take 2000 Vit C with the regimen from now on. We'll see what happens. I'll report back. Thanks for your help!
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Re: The D3 regimen is not working... again
Reply #18 - May 25th, 2017 at 9:48pm
 
Great to see that you're getting on top of your CH and getting to understand better your triggers and limits.
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Re: The D3 regimen is not working... again
Reply #19 - Jun 3rd, 2017 at 7:39am
 
Re: Verapamil, you might try the non extended release version. I used to take 80 mg twice a day and went up to 120 mg twice a day. It can be split in three doses as well. For some reason the extended release did not work for me.
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Re: The D3 regimen is not working... again
Reply #20 - Jun 3rd, 2017 at 7:02pm
 
Verapamil sustained release / instant release is something where you need to try both and work out what works for you. Quite a few people find one version works for them, however the instant release is probably the more common of the two to work.
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Re: The D3 regimen is not working... again
Reply #21 - Oct 7th, 2018 at 2:03pm
 
Hi everybody,

Well, here we are again. After another period of having the Beast under control with the D3 Regimen I find myself again in the situation where it's not working right now. Let's go step by step.

For several months, pretty much since my last bad streak, this has been my daily regimen.

-20.000 IU D3.
-2.4g Fish Oil (720mg total Omega3)
-500mg Magnesium Citrate
-2.000 mg VitC
-200 mcg VitK2
-2.000 IU VitA
-1 tablet of Super B-Complex
-1 tablet of Complete Men 50+ Multi Suplement
-240 mg Verapamil ER

How's that looking? Has the regimen changed or improved in the last few months?

So, the story goes as follows. After several months with only 2 or three attacks per month, August had 7 attacks. By September 9th, I already had 4 attacks so I decided to follow the same instructions that I got from Batch during my last bad streak. I think this streak is worse though, it's every day, several of them and quite strong.

On September 9th:
-I started taking Benadryl 25mg morning and 25mg evening. I forgot taking some of those doses since and the last few days even more so than normal but I think I'm gonna give it another proper go starting today. Should I? How long with pain until we can discard as a source of relief?

-I started taking extra VitC. Not a lot, maybe an average of 3.000 mg extra per day. I wasn't very consisten with it either so, what's the dose that I should aim for?

-Finally, I started taking a probiotic with the regimen. One capsule a day. It's PB8 and the bottle says 14 billion bacteria.

So, that's it. I seriously need help guys, hopefuly you can give me a hand. Thanks and take care!


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Re: The D3 regimen is not working... again
Reply #22 - Oct 7th, 2018 at 2:42pm
 
Also, do you guys know if there's a way to get oxygen on a Sunday as an emergency/exception? I'm in the Los Angeles area.
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Re: The D3 regimen is not working... again
Reply #23 - Oct 7th, 2018 at 3:10pm
 
Visperas,

In a pinch you can pick up a gallon of ice cream and take it to the nearest Fire Station.  Give them the ice cream and explain your need for oxygen to abort cluster headache.  Their EMTs are usually very understanding.

Take care and please keep us posted.

V/R, Batch
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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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Re: The D3 regimen is not working... again
Reply #24 - Oct 7th, 2018 at 3:37pm
 
Visperas,

Allergies are usually the culprit that causes CHers to fall out of remission while taking the anti-inflammatory regimen. 

A week long course of a first-generation antihistamine like Benadryl (Diphenhydramine HCL) at 25 mg every four hours throughout the day should help if your problem is being caused by an allergic reaction. Just be careful and not drive if at all possible as this much Diphenhydramine will make you drowsy.

You're doing everything else that I would do with the exception of switching to Bio-Tech D3-50 (50,000 IU water soluble vitamin D3 capsules).  I order them from amazon.

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I've found this form of vitamin D3 to be more effective at a lower dose than the liquid soft gel formulations.  I started at one 50,000 IU capsule every three days then over the following two weeks, I extended the dosing interval to a capsule every five days.  I'm now taking one of the D3-50 capsules every week and still CH pain free.

Take care and please keep us posted.

V/R, Batch
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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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