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Batch regimen recently stopped working - help (Read 12993 times)
pattik
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Re: Batch regimen recently stopped working - help
Reply #25 - Jun 14th, 2017 at 10:09am
 
Batch wrote on Jun 14th, 2017 at 1:09am:

I also listen to what my body is trying to tell me... I know when everything is functioning properly and I know when something isn't right.


I have given this part of using this regimen a lot of thought. The home test I took in March was 120 Ng, and I have had tests come back higher. At that point everything was great. But just a few weeks later, while still on an elevated dose of 15K/day, a CH cycle started up, albeit pretty mild. When it wouldn't shake off (and worsened a little), I started the 40K dose for a few days, and things are now improving.

I wish we knew all the health conditions/inflammation which can hurt this regimen's effectiveness. I have my share of age-related issues, and when my chronic back or shoulder pain increases, I can be pretty certain my D3 levels are dropping, and the odds are better for a CH attack. That's why I have to be so cognizant of minor changes I experience. And that's why I'm also wondering what a normal and safe blood level is for someone like me who has multiple issues using up the D3. Who knows, maybe 120 Ng or even higher is normal and safe under certain conditions.

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Re: Batch regimen recently stopped working - help
Reply #26 - Jun 22nd, 2017 at 2:59am
 
Yo Batch,

The pdf link within this thread states Magnesium recommendation is chloride, magnesium malate, magnesium glycinate or
magnesium citrate.....I thought Oxide was preferred? Please clarify.

Also, which type of Calcium is best if multi-vitamin does not contain enough mg dosage? I'm pretty sure you recommended Citrate, but please clarify that too.

Lastly, how was the fishing trip? Photos please!

Thanks ole buddy Wink

-Gregg in Las Vegas
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Re: Batch regimen recently stopped working - help
Reply #27 - Jan 11th, 2018 at 10:13pm
 
Hello! Iíve gone pain free since my wedding in June.  I think changing of seasons has brought my headaches back just the last few weeks. 

Iíve been on a loading dose of 80K IU of D3 because Iím desperate.  Still taking everything else on the regimen except K2. Could that be a difference maker?

I considered taking Benadryl but I have no allergies at all and the pollen count is currently zero in my area.  I hate taking Benadryl because it slows me way down and hinders my work.

Any other suggestions on how to kick this cluster quickly?  Thanks!
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Re: Batch regimen recently stopped working - help
Reply #28 - Jan 12th, 2018 at 12:46am
 
Getting married is a new preventive - congrats!

Vitamin K2 could be what is making the difference. Add it and see.

With Benadryl, consider adding it if the K2 doesn't help. It is possible that you have an allergy that you're not aware of.

Benadryl has a half live of 8-10 hours, so try taking it when you get home from work, that should avoid it impacting your work.

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Re: Batch regimen recently stopped working - help
Reply #29 - Jan 12th, 2018 at 4:11am
 
Wow! Great posts and great questions... I'll try to address them in order...

Patti, as I indicated in the earlier post, I'm comfortable with a 25(OH)D serum concentration up to 200 ng/mL...  I've had it that high for a few weeks with no problems.  My serum calcium remained well within its normal reference range and my PTH was in the lower third of its normal reference range.  I'm a chronic CHer so have maintained an average 25(OH)D serum concentration at 140 Ī50 ng/mL taking an average vitamin D3 dose of 20,000 IU/day for the last three years.  This gets me through the high pollen season with only a few days of Benadryl (Diphenhydramine HCL).  My PCP is ok with my 25(OH)D in this range as long as my calcium and PTH remain in the green.

Accordingly, I would work with my PCP to set up prescriptions for the before and after labs of serum 25(OH)D, calcium and PTH then start titrating the vitamin D3 dose up from the present maintenance dose by 5,000 IU every 3 days until completely pain free for 3 days then stay and that dose for at least 15 days before getting another set of labs.  It's also important to drink 2.5 liters of water a day if you're going to push your 25(OH)D above 120 ng/mL.  This helps flush excess calcium from the kidneys.

Yo Greg, Howzit in Idaho? Great question regarding the calcium supplement, which calcium salt works best and what I take...  Nearly all the vitamin D3 experts say calcium chloride works best primarily due to the low incidence of osmotic diarrhea.  In order after that come magnesium glycinate and magnesium oxide.  The consensus holds that magnesium citrate has the highest incidence of osmotic diarrhea. 

I should point out that I've tried all of the above or I wouldn't suggest them in the treatment protocol. I happen to take the Nature Made High Potency 400 mg liquid gelcaps containing magnesium oxide... I've not had any problems with them, but then I've a cast iron GI tract...  What I've found over the years is if I miss a dose of magnesium, I'll start getting hand/finger and leg cramps. Our bodies consume magnesium during the enzymatic reactions that hydroxylate vitamin D3 to 25(OH)D, and 25(OH)D to 1,25(OH)2D3.  Without magnesium supplements, we can easily end up with a calcium-magnesium imbalance and that leads to muscle cramps.  The cramps clear in a couple hours after taking the magnesium.

Hey JT, you're my kind of CHer... I've taken 100,000 IU of vitamin D3 in a single dose after one of my 25(OH)D burn down tests where I stopped taking vitamin D3 until I got hit... Just don't stay at 80,000 IU/day vitamin D3 for too long... and be sure to drink 2.5 liters of water a day...  A trip to your PCP for labs of your serum 25(OH)D, calcium and PTH is also in order after you've stabilized at a new maintenance dose for a couple weeks.

Have you completed the 3-month course of vitamin B 50 Complex?  This was a topic of interest with Dr. Stasha Gominak at the 20th Conference on Vitamin D3 last March in Orlando, FL.  She now suggests her headache patients stay on the vitamin B 50 complex year round.  If you're taking the Kirkland brand 50+ Mature Multi, you should be getting sufficient amounts of the B vitamins...  The Mature Multi formulation also contains chromium picolinate recommended by Dr Coimbra in his vitamin D3 regimen used by MS patients to prevent outbreaks.

Regarding the Benadryl (Diphenhydramine HCL)... Many allergic reactions are subclinical, i.e., no outward or obvious symptoms yet they're still there triggering mast cells to degranulate dumping histamine into your system... The histamine triggers neurons within the trigeminal ganglia to express calcitonin gene-related peptide (CGRP).  This is the nasty neuropeptide that stimulates neurogenic inflammation and the pain we know as CH... Accordingly a first-generation antihistamine like Benadryl (Diphenhydramine HCL) crosses the blood brain barrier to block histamine H1 receptors and this stems the release of CGRP.  25 mg of Benadryl (Diphenhydramine) every four hours during the day for a few days will tell you if an allergic reaction is part of your problem in going CH pain free.  Just be careful and not drive while taking this much Benadryl as it will make you drowsy...  If you need to drive during the day, take 50 mg when you get home for the day and another 50 mg at bed time... If there's no joy... i.e., favorable changes in your CH patterns after 3 to 4 days of Benadryl, discontinue...  I'd also start taking vitamin C at a 1000 mg every 4 hours throughout the day to see what happens. Vitamin C is a great antiviral, antibacterial and antifungal agent.

The other items on the check list include starting a good probiotic and a 1000 mg/day Turmeric (Curcumin).

Hope this answers the questions...

Take care and please keep us posted. 

V/R, Batch
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Re: Batch regimen recently stopped working - help
Reply #30 - Jan 15th, 2018 at 10:22am
 
Batch wrote on Jan 12th, 2018 at 4:11am:

Accordingly, I would work with my PCP to set up prescriptions for the before and after labs of serum 25(OH)D, calcium and PTH then start titrating the vitamin D3 dose up from the present maintenance dose by 5,000 IU every 3 days until completely pain free for 3 days then stay and that dose for at least 15 days before getting another set of labs.†


Batch--thanks for the feedback. When I made that last post on June 14th, I didn't yet realize that I was entering a full-blown CH cycle. I think I was in a little denial from the lovely four year remission from the D3, as well as the time of year (summers are very unusual). What was also unusual, was the length. My previous cycles have been consistently 6 weeks, and this one lasted eight weeks. That might be a subject for another thread. I tried some loading doses with only short-term improvements. So titrating up will be a new thing to try.

My recent blood test came in at 118 ng after being on 15,000 mg for most of 2017. I'm not that worried about this level, except for the fact that this last cycle showed up anyway. But I have lots of age-related inflammation issues, so I'm kind of flying blind with figuring out what is appropriate and safe.

Thanks again for the input. Much appreciated.

Patti
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Re: Batch regimen recently stopped working - help
Reply #31 - Sep 20th, 2018 at 11:03am
 
Hey Batch,

Replying to my original post from last year - headaches are back as of the last 3 weeks and this is the worst they've been since last May (my original post).

I've been on the D3 regimen continuously as it's the only thing that keeps me sane.  I was around 30K-35K IUs pretty regularly over the course of the past year (anything below that I started to suffer).  As of the last 3 weeks I've been at 70K IU.  I'm honestly considering bumping up to 100K IU to see if I can knock it out.

I'm also on the other vitamins/supps like magnesium, fish oil, vitamin K, vitamin A, multi-vitamin.  Just started the vitamin B50 complex two days ago and have started to pop Vitamin C throughout the day.

I've tried the allergy meds in the past and it absolutely kills my work days, even when I take it the night before.

Is there anything else I can be trying?  Is it possible I've built up a tolerance to Vitamin D3?  Is there any way to reset that tolerance so it's more effective for me going forward?

Thanks!

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Re: Batch regimen recently stopped working - help
Reply #32 - Sep 21st, 2018 at 3:58pm
 
Hey JT,

I know what you're going through...† Been there... Had the same thing happen to me while fishing in Pelican, AK last June... Clearly not fun.† In my case, it was exposure to heavy doses of mold spores.

The first three weeks of my month long fishing trip to Pelican were spent blissfully CH pain free taking 10,000 IU/day vitamin D3 plus the cofactors...† Then we had an electrician rewire the circuit box.† In doing so he removed the sheet rock around the circuit box.† That night I got whacked three times.†

I didn't connect the dots for the next 4 days and the frequency of my CH jumped from 3 to 6 hits/night.† 50,000 IU/day vitamin D3 and 200 mg/day Diphenhydramine proved useless.† Had it not been for oxygen therapy with hyperventilation that aborted my CH in an average of 7 minutes, I would have been in deep ka ka.† I finally took a look at the circuit box and found the internal wall space loaded with a thick layer of gray furry mold.† The house was built in 1951 and the roof had leaked at times.

I'd brought along some simple saline nasal spray and a bottle of Bio-Tech D3-50 (50,000 IU water soluble vitamin D3).† I rinsed my nasal passages a couple times with the saline nasal spray and took one of the Bio-Tech D3-50 capsules the night before the Beaver sea plane dash and splash back to Juneau and Alaska Airline flight to Seattle.† I slept like a baby that night.† I've continued to use the Bio-Tech D3-50 at one capsule a week and have been CH pain free ever since.

The bottom line to this story is allergic reactions to CHers are like kryptonite to Superman... Accordingly, I wouldn't take the vitamin D3 dose any higher.† Your problem is more than likely an allergic reaction and depending on the allergen exposure level, even Benadryl (Diphenhydramine HCL) will be ineffective.

Here's a list of what I did to solve this problem.

1.† Get on amazon and order some Bio-Tech D3-50.† Overnight delivery might be prudent if you can get it. Try one 50,000 IU capsule of the D3-50 every three days as an initial dose.† If you stay CH pain free, reduce the dose to one capsule every 5 days then once a week.

2.† Pick up some saline nasal spray and rinse your nasal passages twice a night.† I haven't tried one yet but one of the Navage nasal irrigation systems might be helpful.† This reduces the exposure to airborne allergens that collect in the nasal passages.

3.† Give yourself a vacation and get out of your home for a couple days.

If any of the above actions cuts the frequency of your CH, start looking for the source of the allergens.†
† a. Replace the air filters in your home air handler.

† b. Pick up a hypoallergenic (dust mite proof) mattress cover and new pillows.† Wash the sheets and pillow cases frequently and have the blankets and bed covers dry cleaned.† Lots of people are allergic to dust mite poo.† It's everywhere in the bedding and bedroom.

† c. Make sure your vacuum has a new hypoallergenic dust bag

† d. A hypoallergenic air filter in the bedroom is the next thing to try.

These steps have proved effective for other CHers with our problem so please keep us posted.

Take care,
V/R, Batch
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Re: Batch regimen recently stopped working - help
Reply #33 - Sep 21st, 2018 at 5:52pm
 
Thanks as always, Batch.  Placing the order now and will start nasal spray asap tonight.  Coincidentally leaving town tomorrow for a few days so fortuitous timing.  Do I take the D3-50 in addition to my usual dose of D3 or is that a replacement?  The 50K dose will last 3 days?

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Re: Batch regimen recently stopped working - help
Reply #34 - Sep 21st, 2018 at 8:11pm
 
Hey JT,

Thanks for the reply. The Bio-Tech D3-50 is a replacement...  I've found it to be faster acting (I hesitate to call it an abortive, but it knocked down a CH in less than 20 minutes) and more effective at a lower dose.

I found one D3-50 was effective every 3 days (72 hours) after flying back from Pelican, AK so tapered the dose by extending the time between doses to one capsule every 5 days, then 7 days.  I've gone two weeks without taking a D3-50 on two separate stints without a CH hit, but still made it a point to take all the cofactors, magnesium in particular. 

I've settled on a D3-50 once a week and will stay at that dose for a month then go in for labs for my serum 25(OH)D, calcium and PTH to get a good sensing of the response at this dose.

I suspect the change in venue and nasal rinse with saline nasal spray will have a significant effect in lowering the frequency of your CH...

Take care and please keep us posted.

V/R, Batch
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Re: Batch regimen recently stopped working - help
Reply #35 - Sep 27th, 2018 at 10:42am
 
Batch wrote on Sep 21st, 2018 at 8:11pm:

I've settled on a D3-50 once a week and will stay at that dose for a month then go in for labs for my serum 25(OH)D, calcium and PTH to get a good sensing of the response at this dose.


Hi Batch.
I'm trying this new D3-50 too. Please share your reaction to this new form after you get tested. I'm trying one every 5 days, and my fat-based D3 dose has been 15K/day. I'm interested to know if a smaller dose is more effective than the fat-based version for you. Thanks.
Patti
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Re: Batch regimen recently stopped working - help
Reply #36 - Sep 27th, 2018 at 3:38pm
 
Pattik,

I've found the water soluble vitamin D3 to be more effective at a lower dose than the liquid soft gel formulations.

I was getting hammered by CH 5 to 6 times a night due to an allergic reaction to mold spores. 25,000 to 30,000 IU vitamin D3/day liquid soft gels plus 200 mg/day Benadryl proved ineffective.  Had it not been for oxygen therapy with hyperventilation, I would have been in the hurt locker.  I switched to the Bio-Tech D3-50 as my supply of the 5,000 iU vitamin D3 soft gels was running low.  I slept like a baby that night even with the mold spores still floating around our fishing cabin.

I went 3 days without any vitamin D3 (an average of 16.6 IU/day) then started to feel the onset of a CH so took another 50,000 IU water soluble vitamin D3 capsule.  The CH shadow vanished in less than 30 minutes.  I flew home the next day so waited 5 days before taking another dose of vitamin D3.  As I indicated earlier, I've been taking one of the 50,000 IU water soluble vitamin D3 capsules/week ever since and have remained CH pain free.

Hope this helps.

Take care,

V/R, Batch
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Re: Batch regimen recently stopped working - help
Reply #37 - Sep 27th, 2018 at 4:29pm
 
Paging Batch
I was sent here from the fb page. I have no idea how to start a new thread and it wouldnít let me message you, so Iím highjacking this one (sorry everyone who is receiving alerts on here)
My question is....are verapamil and d3 a good combo? Iím kind of new to both. Reading the vit d wiki I saw someone had an issue with the calcium and magnesium making the verapamil not work....maybe? Tips? Does it just depend on the person? I feel like I maybe have a week tops before my head goes nuclear and Iím desperately trying to stop it. My water soluble d3 will be here today but I have been loading 50,000 with my old stuff for the last two days (along with everything else). Also turmeric will be in the amazon package coming tomorrow. Canít get into the dr til next Thursday and Iíve moved to a new city so Iím jumping in without testing my levels. Should I throw Benadryl in there? Should I nix the verapamil completely? Had it rxíd the for the first time last CH (may) but chickened out on taking it ( I was breastfeeding at the time). I canít figure out how people are taking verapamil for episodic CH? Iím too scared of becoming chronic (and/or needing a pacemaker) to take it daily 365....mine are not predictable enough though to know exactly when to start to be ahead of the headache by much. I saw some people combine it with prednisone...so is predinose killing the headache until the verapamil kicks in? Thatís one of the very few prescriptions I have not tried yet, should I ask for prednisone at the dr appt next week? Should I just take everything I mentioned??? Cheesy honestly tho I very much hate taking medication of any kind but DAMN I really really really do not want this headache to kick in so Iím desperate. Thank you in advance for everything you do!
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Re: Batch regimen recently stopped working - help
Reply #38 - Sep 27th, 2018 at 6:28pm
 
Hey Jenna,

Great questions and welcome aboard CH.com.† In nearly 8 years, there's been no complaints from CHers taking both the anti-inflammatory regimen with vitamin D3 at 10,000 IU/day and verapamil...† Same goes for magic mushrooms should you decide to go in that direction.

The only possible side effect between the anti-inflammatory regimen and verapamil, deals with the calcium in this regimen that may lower the effectiveness of verapamil... if too much calcium is taken...

Most CHers find the anti-inflammatory regimen works so well to prevent CH, they eventually stop taking verapamil.

It sounds like you're off to a good start with the 12-Day vitamin D3 loading schedule.† I would switch to the Bio-Tech D3-50 as soon as they arrive.† When you complete the 12-day loading schedule at 50,000 IU/day vitamin D3 for 12 days, lower the vitamin D3 dose by extending the dosing interval to one 50,000 IU water soluble vitamin D3 capsule every 5 days.† That will work out to an average dose of 10,000 IU/day.

A little background on the 12-day vitamin D3 loading schedule.† There are a couple studies where people with a vitamin D3 deficiency were given a single oral dose of 600,000 IU of vitamin D3.† In three days, their serum vitamin D3 gained 60 ng/mL on top of their starting 25(OH)D serum concentration.† No adverse events reported.†

The following chart illustrates the advantage of the 12-Day vitamin D3 loading schedule with respect to achieving a therapeutic 25(OH)D level of 80 ng/mL rapidly.

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As you can see, the time course 25(OH)D response to a vitamin D3 dose of 10,000 IU/day for a CHer deficient in vitamin D3 could take several months to reach the therapeutic serum concentration of 80 ng/mL where it only takes two weeks using the 12-Day loading schedule.

BTW, turning chronic is not as bad as it sounds as long as you've oxygen therapy at the ready and take the anti-inflammatory regimen.

Hope this helps.† Please keep us posted and do let us know if you have any problems or have any additional questions...†

V/R, Batch
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Re: Batch regimen recently stopped working - help
Reply #39 - Sep 27th, 2018 at 9:30pm
 
Thank you so much I will definitely switch as soon as they get here (love that sweet sweet free amazon one day shipping lol). So you said nothing wrong with the verapamil and 10,000 IU but Iíve already popped two verapamil today and Iím still loading with 50,000 😬 hope thatís ok. Is that a no to the Benadryl? I donít keep up on the message boards (obviously) and thatís something new to me that Iíve seen mentioned several times in my search for answers about vit d3 and verapamil. And thoughts on prednisone? If I have taken my verapamil soon enough I wouldnít need the prednisone right? Or should I not be taking the verapamil at all in case the vit d3 doesnít stop it.... in that case would it be preferable to do the predinose to verapamil routine instead of verapamil alone? As much as I would love to bet the farm all on the d3 (and I have my fingers crossed) I want to make sure I come at this the best way.
And idk about that being chronic bit lol I donít have much luck with medications. For some reason I can never kill a cluster with MM, at most I get a pain free night the night I take them. Really just desperately seeking a preventative instead of abortive.....I might try microdosing between cycles and see if they work better for me that way
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Re: Batch regimen recently stopped working - help
Reply #40 - Sep 27th, 2018 at 9:58pm
 
Oh! And: Iím taking the Kirkland mature multi...that doesnít qualify as too much calcium does it?
Also: Ajovy? Aimovig? Saw these migraine medicines mentioned on the fb group...thoughts? Mentioned by what seemed to be a trusted dr that is familiar with CH on the page.

Many thanks always!
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Re: Batch regimen recently stopped working - help
Reply #41 - Sep 27th, 2018 at 11:39pm
 
Jenna,

I chose the Kirkland 50+ Mature Multi for this regimen as it only has 220 mg of calcium and most of the other vitamin D3 cofactors needed in Vitamin D3 pharmacokinetics and pharmacodynamics in one daily tablet.† I've taken it for nearly 7 years.

As far as the anti CGRP monoclonal antibodies (mAbs) like Ajovy (Femanezumab) and Aimovig (Erenumab) go in preventing migraines... My analysis of their RCT results and the alternative, vitamin D3, indicates $1.50/month worth of vitamin D3 is slightly more effective in reducing monthly migraine days than the $1,725 to $1,800/month mAbs...† You can do your own cost effectiveness analysis...

As far as Benadryl (Diphenhydramine HCL) goes, I would only take it if I hadn't responded to at least the first 5 to 7 days of the 12-Day vitamin D3 loading schedule. No response in that amount of time is a likely indication of an allergic reaction. 

An allergic reaction to CHers is like kryptonite to Super Man.  It makes nearly all forms of CH intervention ineffective.  If adding the Diphenhydramine does work to reduce the frequency of CH, start looking for the allergen causing the problem avoid exposure to it.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Sep 28th, 2018 at 4:32am by Batch »  

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Re: Batch regimen recently stopped working - help
Reply #42 - Nov 19th, 2019 at 4:21pm
 
Hey Batch,

I'm replying again to my ongoing thread so you have the history if needed. I've been headache free for 9+ months using the D3 regimen. As of 3 weeks ago, I started getting headaches again pretty regularly. Usually happens to me when the seasons start to change.

I'm still on the regimen and have been forced to up my D3 to 90K IUs per day (D3-50 + 4 10K liquigels) as of about 2-3 weeks ago. As soon as I reduce by even 10K, I get hit. I added in B50 Complex, been using saline nasal spray 2x day, washed the sheets and changed air filter. I'm desperate again - any additional thoughts? Benadryl seems to help slightly when I'm on it but it absolutely destroys my productivity. I wake up super groggy and out of it no matter when I take it or how much I take. Can't be doing it and going to work next day.

Any additional recommendations?† I do have a blood test scheduled in early December with my doctor. I also have a dose of Aimovig at home but not sure it's worth it + side effects. I've never tried it before.

Thanks as always.

JT
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« Last Edit: Nov 19th, 2019 at 4:22pm by JT08 »  
 
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Re: Batch regimen recently stopped working - help
Reply #43 - Nov 21st, 2019 at 12:58pm
 
Hey JT,

Sorry the CH beast has been jumping ugly.  What you're experiencing happens from time to time to all of us taking the anti-inflammatory regimen.  It's likely due to an allergic reaction.  This time of year the culprit allergen is likely leaf mold spores but it could be due to dietary sources like wheat products.

The best course of action is to start a vitamin D3 loading schedule at 50,000 IU/day and continue at this dose until you experience a significant reduction in the frequency of your CH or a lasting pain free response for at least 48 hours.  At that point you can drop back to your usual maintenance dose of vitamin D3. Remember to double the magnesium dose to 800 mg/day split 40 mg with breakfast and 400 mg with the evening meal. while loading D3. 

30 days after starting this loading schedule, see your PCP/GP for labs of your serum 25(OH)D3, calcium and PTH.  As long as your serum calcium remains within its normal reference range, there is no vitamin D3 intoxication/toxicity.  It's best to have your PCP/GP write the lab orders for the nearest Quest Diagnostics.  They us the Liquid Chromatography Dual Mass Spectroscopy (LC-MS/MS) assay method.  It has a maximum reading of 512 ng/mL where the DiaSorin assay is only good to 117.4 ng/mL.

The Quest Diagnostic labs you want are:

25-Hydroxyvitamin D3 [25(OH)D3].  Quest Diagnostics Test Name: 92888 - QuestAssureD 25-OH Vitamin D (Total), LC/MS/MS CPT Code 82306.

Parathyroid Hormone (PTH) Intact and Total Calcium. CPT codes 83970, 82310.

Taking Benadryl (Diphenhydramine HCL) at 25 mg every four hours throughout the day for a max of 10 days might help.  Just be careful and not drive as this much Diphenhydramine will make you drowsy.  If you need to drive or be sharp as a tack duringu the day, wait until you're home then take 50 mg as you walk through the door and another 50 mg at bedtime.

It's essential to take all the supplements in this regimen within 10 to 20 minutes after finishing the largest meal of the day.  Stomach acid will be highest at this point and that helps ensure these supplements are properly broken down for absorption when the reach the small intestine. 

Diet and in particular sugar and wheat products (bread, pasta, crackers, cookies and pizza) should be avoided completely until you've been back CH pain free for at least a week or two.  Even then I'd avoid all sugars and limit wheat products.  I would also start a course of a good probiotic.

Take care and please keep us posted.

V/R, Batch
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Re: Batch regimen recently stopped working - help
Reply #44 - Dec 2nd, 2019 at 9:30pm
 
Thanks, Batch. Iíve been taking the Benadryl for about 8-9 days. Only 50mg or so per day but itís worked great. Pain free for the most part. I stopped taking it today and headaches came back. How long can I stay on the Benadryl? And is it important to be at that every 4 hours dose you mentioned even if Iím getting results with less? Thanks!
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Re: Batch regimen recently stopped working - help
Reply #45 - Dec 4th, 2019 at 6:34am
 
Hey JT,

Thanks for the feedback.  That your CH came back when you stopped the Benadryl (Diphenhydramine HCL) is actuall a good sign.  It tells us you're battling an allergic reaction to something in your environment or the food you're eating.

The solution that has worked best for CHers in your situation is to start loading vitamin D3 at 50,000 IU/day and continue loading until you've experienced at least 24 hours CH pain free.  If you haven't done so, many CHers have found switching to the Bio-Tech D3-50 water soluble 50,000 IU vitamin D3 capsules cut the time to CH pain free results.  The D3-50 capsules are faster acting with a higher bioequivalence in elevating serum 25(OH)D3 than the same dose of the oil-based liquid softgel vitamin D3 formulations.

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Be sure to double the magnesium intake from 400 mg/day to 800 mg/day split 400 mg with breakfast and 400 mg with the evening meal.  Take all the other vitamin D3 cofactors with the evening meal.

When you've been CH pain free for 24 hours, drop back to a maintenance dose of 10,000 IU/day if taking the liquid softgel form of vitamin D3.  If you're taking the Bio-Tech D3-50, drop back to a maintenance dose of one (1) D3-50 capsule a week.  It's a good idea to see your PCP/GP for lab tests of your serum 25(OH)D3, calcium and PTH 30 days after you've stopped loading vitamin D3.  As long as your serum calcium remains within itss normal reference range, there's no hypercalcemia, a.k.a., vitamin D3 intoxication/toxicity.

All the supplements in this treatment protocol should be taken within 10 minutes of finishing the largest meal of the day. The reason for doing this is simple.  Stomach acid content is highest at this point and that helps break down the food you've eaten as well as the supplements for better absorption. 

Depending on the meal size and fat content, the pancreas starts squirting pancreatic juices into the duodenum in as little as 30 to 40 minutes after eating.  These juices are high in bicarbonate (like Arm & Hammer Baking Soda) and this neutralizes the hydrochloric acid so it can pass into the small intestine.  Accordingly taking these supplements more than 30 minutes after eating may cause them to pass into the small and large intestines undissolved so will do little good.  The following X-Ray illustrates three days worth of two calcium tablets/day taken on an empty stomach.  As you can see all six tablets are still undissolved in the large intestine.

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Diet is also an important thing to change at this point as the allergen(s) causing your problems may be dietary.  Accordingly, it's best to cut out all sugars and fruit juices.  Avoiding all wheat products is also essential.  That means no bread, pasta, cookies, crackers or pizza starting now and lasting for at least a month after a 24 hour CH pain free response.

Take care and please keep us posted.

V/R, Batch
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Re: Batch regimen recently stopped working - help
Reply #46 - Dec 6th, 2019 at 12:50am
 
Hey Batch,

Thanks for the reply and all the great info. Iíve been at a high dose of D3 for several weeks now, up to 90K IU mixture of the D3-50 and soft gels. Should I take to higher to get a more intense loading dose for next few days? What Iím taking is just barely getting me by, headaches been back as of the last week, any time I bring it down even 10K I get hit. Iíll try taking it right after dinner. Havenít done that yet. Gonna start trying to identify the allergy as well - wash bedding, new pillow, etc.   Let me know if yo have any other thoughts. I really appreciate it.
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Re: Batch regimen recently stopped working - help
Reply #47 - Dec 6th, 2019 at 10:46am
 
Hey JT,

Thanks for the update.† I've been in your shoes...† "Do I take more vitamin D3 or what?"† The first thing to remember about vitamin D3 therapy is it is not the dose that counts, but rather the 25(OH)D3 response and of course, a cessation of your CH attacks.

That's a not so subtle hint to see your PCP/GP for lab tests of your serum 25(OH)D3, calcium and PTH ASAP!† If your serum calcium is still within its normal reference range and even if it's up against the upper limit...† continue loading vitamin D3 at 50,000 IU/day then taper the dose to find how much you need to remain CH pain free then test again.†

Have your PCP/GP order your labs from the nearest Quest Diagnostics collection site.† You may as well have your PCP/GP write two sets of lab orders.† One now and the second 30 days later.† The orders should be written as follows:
  • 25-Hydroxyvitamin D3 [25(OH)D3]. CPT Code 82306. Quest Diagnostics Test Name: 92888-QuestAssureD 25-OH Vitamin D (Total), LC/MS/MS.
  • Parathyroid Hormone (PTH) Intact and Total Calcium. CPT codes 83970, 82310.
You can also pick up some 3 mg boron tabs and take one a day.† Boron down-regulates the expression of Vitamin D3 24-Hydroxylase (CYP24A1).† This is the enzyme that hydroxyates (Adds a hydroxyl [OH] group) to vitamin D3, 25(OH)D3 and 1,25(OH)2D3.† This starts their destruction and eventual elimination down the dumper so they become useless in preventing CH.† The net effect is lower serum and cellular concentrations of vitamin D3 and its metabolites 25(OH)D3 and 1,25(OH)2D3.† Without 1,25(OH)3D3 we have no effective CH prevention regardless of the vitamin D3 dose.†

Accordingly, taking 3 mg/day boron helps preserve oral vitamin D3 and its metabolites resulting in a higher serum vitamin D3 and 25(OH)D3 concentrations. This translates to higher cellular concentrations. The mechanism of action underlying vitamin D3 and its capacity to prevent CH involves vitamin D3 and 25(OH)D3 passing through the blood brain barrier and into neurons within the trigeminal ganglia.† Once there, they are further hydroxylated to 1,25(OH)2D3 the genetically active vitamin D3 metabolite that down-regulates the expression of CGRP, SP, VIP and PACAP preventing our CH.

As far as being in your shoes goes...† I got hit with a major allergic reaction to mold spores in June of 2018.† My 25(OH)D3 serum concentration was upwards of 140 ng/mL at the time to get through the spring pollen season, so was a little surprised, but I continued loading at 50,000 IU/day for over a week along with the Benadryl at 25 mg every four hours during the day until I experienced a CH pain free response.† Here's a chart of my labs for 25(OH)D3, Calcium and PTH over the past three years.

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I keep my PCP in the loop on all this so asked for labs every 90 days.† My PCP understands my need to take higher doses of vitamin D3 and has no problem with my 25(OH)D3 being as high as (188 ng/mL) as long as my serum calcium remains within its normal reference range... and it has.† It's also important to note that my serum PTH trace mirrors serum calcium.†

This is a classic indication of calcium homeostasis in action. As the serum calcium goes up, serum PTH goes down.† This results in less 25(OH)D3 being hydroxylated in the kidneys to 1,25(OH)2D3 and as this genetically active metabolite pulls calcium from the gut and bones, less calcium is pushed into the bloodstream to keep its serum concentration within its normal reference range. I also use MyQuest at the following link to review my lab results.† Open an account...† its free.† Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Bottom line... See your PCP/GP for lab tests of your serum 25(OH)D3, calcium and PTH.† If your serum calcium is still within its normal reference range, load away with 50,000 IU/day vitamin D3 and add 3 mg/day boron.† Test again once you've reached a CH pain free state and have found a lower vitamin D3 dos that keeps you there.

If you haven't eliminated all wheat products and sugars, now would be a good time to do so.

Hope all this makes sense.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Dec 6th, 2019 at 11:17am by Batch »  

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Re: Batch regimen recently stopped working - help
Reply #48 - Dec 9th, 2019 at 6:58am
 
Hello Batch,

Once again, and as always, thanks for all of your help here over the years. It is no overstatement to say that the vitamin regimen may have saved my life. I am an episodic sufferer who has benefitted greatly from the D3 regimen. I've 100% noticed the decline in frequency and severity during my episodes. It's been three years since my last episode, but I recently got hit. I immediately started the regimen and have increased to the 50k loading dose last week (I know I should have stayed on a maintenance dose, but three years, you know...) With some tinkering, especially adding 25 -50 mg of Benadryl, my KIP 5/6's have gone down to shadows, with a few exceptions. Here is my regimen:

Fish Oil      2000 iu
Calcium      600 (carbonate, not citrate) mg
Magnesium 800      (split between am and pm) mg
K2      † †† †† 100 iu
A      † †† †† 2400 iu
Zinc†      7.5 mg
Boron† †† † 1mg
D3.† †† †† †† 50,000 iu or more

I went four days headache free after a KIP 7 when I started the loading dose, and everything was going great. Then yesterday, I went on a nice long hike to a waterfall with some friends, got home, and went to lunch at a Mexican restaurant. I had two draft beers with lunch and then BAM--thirty minutes later and I had the worst cluster of my life, by far. A KIP 9 going on a KIP 10 that lasted for over an hour (I do not have oxygen).

I have a few questions: 1) I've recently noticed diet recommendations here on the message board. Was my attack likely triggered by the wheat/sugar in the beer and lunch? This would be a little weird, as similar lunches haven't triggered me since I started the loading dose. 2) Should I be taking more D3 as an abortive during an attack? 3) How essential is calcium citrate v. carbonate?

I am going to start the B50 regimen today and add Vitamin C.

Thanks again!
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Re: Batch regimen recently stopped working - help
Reply #49 - Dec 9th, 2019 at 8:30am
 
Hey William,

Thanks for the update and kind words.† It's exchanges like this over the last 9 years that have enabled me to compile a working knowledge base of CHers taking the anti-inflammatory regimen including how it works, when it doesn't work, why and what to do when it doesn't work.

You took the words out of my mouth about ECHers staying on this regimen year round so I won't belabor that point.† What I will say is in the absence of vitamin D3 intake and no cutaneous vitamin D3, the average adult burns through 15 Ī5 ng/mL of 25(OH)D3 per month.†

That means if your 25(OH)D3 serum concentration was 80 ng/mL while taking this regimen and the average 25(OH)D3 CH threshold is 60 Ī10 ng/mL below which you get hammered, 2 months without vitamin D3 lowers your serum 25(OH)D3 to 50 ng/mL.† Accordingly if you're hit with an allergic reaction any time after that... the CH beast is going to jump real ugly in no time at all.

That your most recent CH was most likely due to an allergic reaction is a no-brainer...† What caused the allergic reaction is another story.† It could be your walk to a waterfall.† They have a habit of putting out mist and nano droplets loaded with lots of mold and moss spores from the moss and ferns growing around the falls.† It could be the Mexican food and it could be the two draft cervezas.†

Allergic reactions can be subclinical with no outward or obvious symptoms - unless you're a CHer in which case it's like Kryptonite to Superman triggering the CH beast to jump real ugly.

As this appears to be a one-off occurrence, I wouldn't worry about the cause and focus instead on the treatment.† The tried and true course of action in this case is to start loading vitamin D3 at 50,000 IU/day, double the magnesium to 800 mg/day split AM/PM along with all the cofactos take with meals (10 to 20 minutes after eating) and start a week to 10 day course of Benadryl (Diphenhydramine HCL) at 25 mg every 4 hours throughout the day.†

When you've been CH free for at least a week to 10 days, taper the vitamin D3 dose back down to your usual maintenance dose over a two week period.† This much vitamin D3 should elevate your serum 25(OH)D back up well above the 25(OH)D3 CH triggering threshold of 60 Ī10 ng/mL.

30 days after you start loading vitamin D3, it's prudent to see your PCP/GP for lab tests of your serum 25(OH)D3, calcium and PTH.

Regarding the vitamin B complex...† The latest change to the anti-inflammatory regimen will include switching to the Bio-Tech D3-50 50,000 IU water soluble form of vitamin D3.† I and many other CHers have found it to be faster acting with a higher bioequivalence in elevating serum 25(OH)D3 than the same dose of the oil-based liquid softgel vitamin D3 formulations.

I'm also suggesting METHYL FOLATE + by One Elevated as it contains the B complex we need in the most bioactive forms.† 30 days should be sufficient.† After that there's ample B Complex in the Kirkland brand Adult 50+ Mature Multi.

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Take care and please keep us posted.† Again it's the feedback that helps make this regimen and treatment protocol better for the next CH.

V/R, Batch
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« Last Edit: Dec 10th, 2019 at 12:37pm by Batch »  

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