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Anti-Inflammatory Vitamin D3 Regimen and Survey (Read 277600 times)

sue_g CH.com Junior Offline I love YaBB 1G - SP1! Posts: 76 x0\|Gananoque\|Canada\|\|0\|0\|ON,Ontario Gender:	Re: Anti-Inflammatory Regimen Update and Survey Reply #225 - Sep 17^th, 2014 at 5:39pm You are the BEST Batch!! Please let us know when you attend any CH meetings or such. I'd love to shake your hand!! p.s. or give you a hug Thanks so very much, Take care! Sue
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shooky

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Re: Anti-Inflammatory Regimen Update and Survey
Reply #226 - Sep 17^th, 2014 at 6:20pm

Just got my lab test results and my 25(OH)D is 102 ng/ml.

Still not PF. Had 4 nights without attacks, than 4 nights with attacks. Still getting 1-2 daily attacks. BUT:

a. almost no shadows.
b. most of my attacks are easily aborted with 2-4 minutes of O2 at 15lpm.
c. some attacks require Imitrex, but only 1-2mg each time (using the "Imitrex tip").
d. had my 22 liter O2 cylinder replaced the other day. Managed to use it for almost 4 weeks, before it went empty.
e. I'm far less sensitive to certain triggers, especially to strong odors.

So I guess I'm not the best example for the regimen success but there is a significant improvement compared to the days when my 25(OH)D was around 30 ng/ml.

« Last Edit: Sep 19^th, 2014 at 12:47pm by shooky »

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CHRD

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Re: Anti-Inflammatory Regimen Update and Survey
Reply #227 - Sep 18^th, 2014 at 10:11pm

sue_g wrote on Sep 17^th, 2014 at 5:39pm:

You are the BEST Batch!!

Please let us know when you attend any CH meetings or such. I'd love to shake your hand!!
p.s. or give you a hug Smiley

Thanks so very much,
Take care!
Sue

I second that -- Batch is a lifesaver and deserves a round of applause and many hugs!! Smiley

« Last Edit: Sep 18^th, 2014 at 10:12pm by CHRD »

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Schmedleyb

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Re: Anti-Inflammatory Regimen Update and Survey
Reply #228 - Sep 19^th, 2014 at 4:57pm

Thanks for this thread Batch. I see it has been a long time in the making.
I am new here but have been with the beast for about 12 years now.
My cycles are relatively short (4-6 weeks) and spread themselves out over long periods(12-18 months).
I have been out of cycle for almost 2 years, but, about a week ago I started to get that feeling again.
I tend to have all day shadows with occasional ice pics throughout the day for about a week, and then I get a full blown event that lasts for up to 4 hours for the next 3 to 4 weeks. then they retreat to the shadows again for about a week.
I have tried a lot of medications O2,Relpax,and Imitrex.
The sumatriptan was the only thing that worked for me.

Anyway, I remembered last weekend about this forum, and looked it up again. I found your Regimen posts and read through them.
I was experiencing shadows all day while at work and stopped at the pharmacy on the way home and picked up some D3 and fish oil.
After dinner, I took 5000I.U. and 1000 mg fish oil cap with only 680 omega 3's.
Before bed (2 hours later) my shadows were almost non existent and I slept great.
Woke up this morning with no shadows and took another 5000I.U. after my cheerios.
I have felt great all day with only a couple hints of a shadow here and there.
I know this is not a lot of technical data, and that I'm not taking all the things that were recommended, but wanted to let you know that your findings seem to make a lot of sense and I am pretty sure that you are on to something with the D3.
Thanks so much.
I will let you know how it goes with only the D3 and Omega 3.

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Batch

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Re: Anti-Inflammatory Regimen Update and Survey
Reply #229 - Sep 19^th, 2014 at 7:43pm

Hey Schmedley,

Thanks for the headzup you've started taking vitamin D3... You play the board game Acey Deucey?

Taking only vitamin D3 and Omega-3 will work quite well to prevent CH... for a while... until you burn through your available serum magnesium... then they won't...

You'll need around 400 mg/day vitamin D3 in order to sustain the enzymatic processes that metabolize vitamin D3 to it's active hormonal form, 1,25(OH)2D3. The other essential cofactors can be found in a tablet of Kirkland's Mature-Multi.

Take care and please keep us posted.

V/R, Batch

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Batch

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Re: Anti-Inflammatory Regimen Update and Survey
Reply #230 - Sep 22^nd, 2014 at 6:36am

Shalom Shooky,

Thanks for the detailed feedback. It appears you're starting to respond to this regimen so it may be just a matter of a few days to a few weeks before you're completely pain free.

That said, with your 25(OH)D over 100 ng/mL and you're still getting some hits, it appears "tuning" may be in order.

Understanding a little about vitamin D3 phamacokinetics, (what the body does to vitamin D3) and vitamin D3 pharmacodynamics, (the pharmacological effect of vitamin D3 on the body), may help in the "tuning" process.

Your serum concentration of 25(OH)D is near the high end of the green zone so the first part of vitamin D3 pharmacokinetics where the liver metabolizes vitamin D3 to 25-Hydroxyvitamin D3 a.k.a. 25(OH)D is working as advertised and you're taking sufficient vitamin D3...

The next phase where 25(OH)D gets metabolized to 1,25(OH)2D3 at the cellular level, requires another enzyme, 25-hydroxyvitamin D-1alpha-hydroxylase. This enzymatic process requires magnesium.

As there was sufficient magnesium to support the enzymatic process that metabolized vitamin D3 to 25(OH)D, it would appear there's also sufficient magnesium to support 1alpha-hydroxylase in producing 1,25(OH)2D3.

It's this extrarenal autocrine signaling path of vitamin D3 metabolism that occurs at the cellular level that appears to be responsible for the mechanism or mechanisms of action that prevent CH.

Molecular biologists have found that 1,25(OH)2D3 combines with retinoic acid, a metabolite of vitamin A (retinol) and that this complex molecule attaches to a gene at what are called vitamin D response elements (VDRE). VDRE contain a vitamin D receptor (VDR) and also a retinoic acid receptor (RAR).

VDRE target genes play key roles in cellular metabolism, bone formation, cellular growth, differentiation, cell death and in controlling inflammation.

Where all this gets really interesting is a 2010 study identified 2776 genomic positions occupied by the VDR and 229 genes with significant changes in expression in response to vitamin D3. 532 genes have been put forward as regulatory targets of retinoic acid... Accordingly, it’s very likely the suppression of cluster headache involves several of these VDRE.

Molecular biologists have also found VDRE contain zinc at the receptor attach points...

That makes one of the short answers in tuning the anti-inflammatory regimen in your case, increase the vitamin A (retinol) and zinc.

Finally, none of the cluster headache abortive or preventative treatments work very well if serum pH is low... Too much acid. The best thing to try in this case is an alkaline forming diet...

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The GOMBS diet can also help. GOMBS stands for Greens, Onions, Mushrooms, Beans-Berries and Seeds-Nuts. A handful of each a day would be good for starters.

You can find more about GOMBS diets at the following links:

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Hope this helps.

Take care and please keep us posted.

V/R, Batch

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Fitzer

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Re: Anti-Inflammatory Regimen Update and Survey
Reply #231 - Sep 22^nd, 2014 at 4:52pm

I've been on the regimen for nearly a month now so I thought I'd give an update. My headaches have definitely been reduced but not consistently. Here's how its gone. It took about 15 days until I experienced a significant reduction in my headaches (probably 50-75% better in terms of frequency and intensity). This good response lasted a few days and I also had my D3 levels checked for the first time during those few good days. My results were 81 ng/ml.

Then I caught a cold and my headaches returned as strong as ever. My theory was that the cold lowered my D levels so I bumped up my dose to 40,000 IU a day. My cold lasted a week, but once it went away, my headaches got significantly better again for a few days. So then I started decreasing my 40,000 IU dose by 5,000 a day to get back to recommended dosage. After 3 days, when I got to 25,000 IU, my headaches got bad again. So now I've bumped back up to 40,000 a day for a couple days but no relief.

There is no question that this regimen has helped my headaches significantly, more than any other treatment I've tried. But I'm just having trouble seeing consistent results. I get a few really good days, and then a few bad days. It's a pain because I keep getting my hopes up and then get slammed again. I'll probably order another vitamin d test kit this week, unfortunately it will likely take about two weeks for me to get results.

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Batch

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Re: Anti-Inflammatory Regimen Update and Survey
Reply #232 - Sep 23^rd, 2014 at 1:03am

Hey Fitzer,

Thanks for the outstanding feedback... Your observations, theory and course of action are all spot on. Trial and error is a powerful discovery tool and learning aid... I've been down that road a few times with respect to this regimen...

While 80 ng/mL is a sufficient 25(OH)D serum concentration to keep most CH'ers CH pain free... some of us require more.

I've been in contact with several CH'ers who need to maintain a 25(OH)D serum concentration between 100 and 140 ng/mL under a physicians supervision to stay pain free. They're also being tested frequently for serum calcium and PTH.

I've also seen lab data that indicates it's not uncommon for CH'ers to experience ± 20 ng/mL variations in their 25(OH)D response to a sustained intake of 10,000 IU/day vitamin D3... with no other apparent comorbid conditions like a cold, flu, or allergy present.

Bottom line... we're all still learning how this regimen works and how to make it more effective in preventing our CH.

Don't be afraid to take vitamin D3 loading doses if your CH return... or to set a higher maintenance dose. Following up with another 25(OH)D home blood spot test is prudent once you've been on a new maintenance dose for a few weeks.

It's also wise to keep your PCP or neurologist in the loop... if for no other reason than to provide continuing medical education (CME).

Take care and please keep us posted.

V/R, 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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stevegeebe

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Re: Anti-Inflammatory Regimen Update and Survey
Reply #233 - Sep 23^rd, 2014 at 2:01pm

Hey Batch.
Quick and dirty. Mild shadows started about ten days ago. Noticeable uptick last Friday. Started D3 5000 IU x 4 Saturday along with Fish Oil 1200 mg x2, Magnesium 500 mg, and Multi 50+ (made with D3).

Shadows turned to CH onset Saturday (all am) with two mild hits which were pushed back with hot showers. Sunday same except three and hot showers. Monday see neuro to secure O2, Pred and Vrap. Monday same except six hits. 02 gone aborting four and two pushed back with hot showers. Hit twice today at work during the day! Nothing terrible and road them out. Drained away rather quickly. It's lunch (stuffed bell pepper BTW) and here I am.

1. Reluctant to bump up D3 as I am on outdoor job sites regularly and I work in the garden on weekends.
2. The number of attacks are as frequent as peak cycle but none are grueling and topping out at twos.
3. Reluctant to start Vrap at this time.

Odd cycle thus far but I'll take it. Fear ever present.

You are the nuts.

Steve G

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stevegeebe CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1687 Mandeville, LA Gender:	Re: Anti-Inflammatory Regimen Update and Survey Reply #234 - Sep 23^rd, 2014 at 2:09pm On another note...we will be hiking in the GSM in late October. I want to be drinking Tennessee whiskey and seasonal beer on the back porch of my cabin after a long hike in the Park. I want them gone Batch! I want them gone.
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Batch

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Re: Anti-Inflammatory Regimen Update and Survey
Reply #235 - Sep 23^rd, 2014 at 2:28pm

Hey Steve,

Thanks for the update... Don't be afraid to load up on vitamin D3 just because you work outside... You'd need to be running around in a speed-o without any sunblock for 30 minutes a day 5 to 6 days a week before cutaneous vitamin D3 would become a factor.

Following the 4-week vitamin D3 loading schedule is the fastest way to get through the uptick in frequency and into the PF green zone.

There are a lot of Multiple Sclerosis patients taking 40,000 IU/day vitamin D3 plus some of the cofactors. They're maintaining a 25(OH)D serum concentration around 140 ng/mL in order to keep their MS in remission...

They're also drinking lots of water and avoiding calcium and dairy products, but no problems with serum calcium or PTH reported... and all are under a physician's supervision with frequent testing.

I agree with holding off on the verapamil...

As it appears your CH hit in the morning and during the day, try taking the 20,000 IU/day in the evening by popping the four 5,000 IU softgels between your back teeth. Hold the contents between your cheek and gum for 15 minutes and avoid drinking any fluids during that time. They taste slightly sweet and the gelcap turns into a gummy bear consistency before dissolving.

This method of taking vitamin D3 bypasses the GI tract and enables vitamin D3 to pass directly into the bloodstream. This should ensure a maximum 25(OH)D serum concentration during the day.

If the CH shift into afternoon and evening, pop the 20,000 IU of vitamin D3 gelcaps in the morning when you get up.

Take care and please keep us posted.

V/R, 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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Re: Anti-Inflammatory Regimen Update and Survey
Reply #236 - Sep 23^rd, 2014 at 3:12pm

Update time. Have been at 20,000 ii now for almost two weeks with a loading dose of 50,000iu. Also fish oils; magnesium 400 and a Multi. Also went the vitamin mm route for the their time last night. Getting slammed with possible slapbacks or everyday clusters. Actually, this morning vomited and came very close to passing out during a kip10. All day today still getting smacked. Not as intense but beating me down still. Any thoughts on upping my daily dose or just stick with it? I may try the suggestion you just made about popping them with my teeth. Avoiding the gi tract a very good idea as I also have crohns disease. I need some relief soon. Hope everyone is well.

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Re: Anti-Inflammatory Regimen Update and Survey
Reply #237 - Sep 24^th, 2014 at 1:29am

Hey Birdman,

Sorry you're having such a rough time... I don't need to tell you that you're battling a double whammy with CH and Crohn's...

Do you have oxygen therapy available? The latest methods with hyperventilation can abort a CH in an average of 7 minutes if started early.

One of the problems you're facing is Crohn's can interfere with vitamin D3 absorption...

Popping the vitamin D3 softgels between your back teeth and holding the contents between your cheek and gums for 15 minutes will bypass the GI tract, get the vitamin D3 directly into your bloodstream and that should help increase serum 25(OH)D a lot faster.

The complete regimen should also help reduce Crohn's symptoms once you get your 25(OH)D well into the green zone at or above 80 ng/mL. See the following link:

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Take care, hang in there and keep us posted.

V/R, Batch

« Last Edit: Sep 24^th, 2014 at 1:30am by Batch »

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stevegeebe CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1687 Mandeville, LA Gender:	Re: Anti-Inflammatory Regimen Update and Survey Reply #238 - Sep 24^th, 2014 at 7:53am Batch, Bumped the D3. Only two minor, minor outbreaks overnight. Just waking up. I will keep you posted. Thanks, Steve G
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #239 - Sep 24^th, 2014 at 10:08am

Thanks Batch. I do have o2 tanks, regulator at 15lpm. May need to by higher flow regulator. I have not been able to attempt the hyperventilation method as I have ramped so quickly I am unable to do much. Last night I got hit every hour for ten minutes and o2 cleared it except this morning. Exhausted is the word of the day. Trying to convince myself not to do a pred taper and imitrex but I am wiped out and the anxiety levels are dangerously high. Not a good mental state this morning. To pred or not to pred...that is the question

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shooky

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Re: Anti-Inflammatory Regimen Update and Survey
Reply #240 - Sep 24^th, 2014 at 10:49am

Dear Batch,

Thanks for the thorough answer. Before reading it I started thinking I may be megnesium deficient and have just changed the supplement I was using. But if I understand you right than this can't be the problem (?)

I'm already taking 22mg zinc a day so I guess the problem isn't there. Will try upping the Vitamin A and some sort of an alkaline forming diet. Although I already consume a lot of lemon juice as it is.

About the GOMBS diet - Dr. Fuhrman recommends eating hummus and tahini (which I do), but the list of Acid / Alkaline Forming Foods says chickpeas and tahini are acid forming. So who's right?

« Last Edit: Sep 24^th, 2014 at 7:31pm by shooky »

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Batch

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Re: Anti-Inflammatory Regimen Update and Survey
Reply #241 - Sep 24^th, 2014 at 10:03pm

Shooky,

Good question... The answer is both are right... but for different reasons. A GOMBS diet is not completely alkaline forming... but it is very healthy. I still love a dish of hummus (with tahini) covered with EVOO and eaten with warm Greek Pita...

The other thing to try is a pro-biotic or a live Greek yogurt... The 3-month course of vitamin B 50 will also help colonize friendly bacteria in the GI tract.

Regarding the magnesium and zinc. 400 mg/day zinc and 11 mg/day zinc are the RDA.

You can take magnesium up to the bowel limit, but 400 mg/day is sufficient for most of us and 600 mg/day is ok for a few days particularly when taking the 50,000 IU loading doses of vitamin D3... The UL (Upper tolerable limit) for zinc is 40 mg/day but I wouldn't go over 50 mg/day... A dozen medium sized oysters will provide as much as 75 mg zinc.

Take care and please keep us posted.

V/R, 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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Fitzer

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Re: Anti-Inflammatory Regimen Update and Survey
Reply #242 - Sep 25^th, 2014 at 10:40pm

Back with another update. I had a terrific day on Tuesday. Only got hit bad one time and just a few lingering shadows throughout the day, which is a really good day by my standards. And the good effects continued until midday Wednesday. But in the last 36 hours the beast has come roaring back. Lots of hits, constant shadows.

The only thing I can think of that I've done differently in the past few days is that I began taking Betaine HCl on monday and have been increasing the dose daily. I was recommended to take it because of some digestive issues that I suspect are caused by low stomach acid. Not going to get into too much detail about that issue here, and it's obviously not as big of an issue as my CH's. I'm just curious if Betaine HCL (which increases stomach acid) could in some way be interfering with the vitamin regimen, my verapamil, or just making my headaches worse all on its own. Going to stop taking it indefinitely and see what happens I guess.

« Last Edit: Sep 25^th, 2014 at 10:42pm by Fitzer »

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Batch

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Re: Anti-Inflammatory Regimen Update and Survey
Reply #243 - Sep 25^th, 2014 at 11:38pm

Hey Fitzer,

Thanks for the update... Anything that increases systemic acidity and that results in a low arterial pH, will adversely affect nearly all cluster headache medications making them less effective or not effective at all. That includes the anti-inflammatory regimen.

I can't say for sure, but starting the Betaine HCl and increasing its dose is likely the cause of the increased frequency and intensity of your CH...

I'm not a doctor... However, if you're having GI tract and stomach problems, there are other more effective natural treatments. Avoid sugar and wheat products containing gluten... The GOMBS diet is a good place to start. Greens, Onions, Mushrooms, Beans-Berries and Seeds-Nuts can work wonders. A handful of each a day can really help.

Adding probiotics, live yogurt cultures, fermented vegitables like sauerkraut, vitamin B 50 and live cider vinegar cultures can also help. All of these food types help grow friendly colonies of bacteria in your GI tract. We need them to function properly.

If you try the above and are still having problems, see your PCP for a checkup and complete set of labs... You could have other deficiencies in play.

Take care and please keep us posted.

V/R, 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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shooky

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Re: Anti-Inflammatory Regimen Update and Survey
Reply #244 - Sep 26^th, 2014 at 3:06pm

Batch, I'm already taking B-50 for some time and have at least one probiotic yogurt a week. I also get most of my Vitamin A from vegetables (carrots, sweet potatoes, greens + a weekly chicken liver), and don't eat much meat or refined sugar/carbohydrates. So I guess my diet falls somewhere between the GOMBS and the Alkaline forming diets as it is. And I also take Melatonin which, if I'm not wrong, has an alkalizing effect as well.

So what AM I doing wrong?

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Re: Anti-Inflammatory Regimen Update and Survey
Reply #245 - Sep 26^th, 2014 at 4:39pm

Shanah Tovah Shooky,

You're not doing anything wrong... With the exception of melatonin, I've done the same things following a few of my 25(OH)D burn down tests...

You may be experiencing a sub-clinical allergic reaction to something... Not enough to notice symptoms, but enough of a reaction to trigger an immune response.

The only thing I can suggest at this point is increase the Omega-3 fish oil... and take another 50,000 IU vitamin D3 loading dose. Both should increase the anti-inflammatory effect and bumping your 25(OH)D up a little higher may be all it takes for a more complete CH preventative response.

Take care and please keep me posted.

V/R, 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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shooky CH.com Veteran Offline 33 years of CH. Posts: 193 TLV Israel Gender:	Re: Anti-Inflammatory Regimen Update and Survey Reply #246 - Sep 28^th, 2014 at 5:59am I surely will. Shana Tovah U-Metukah ("and a sweet one") Batch.
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #247 - Oct 7^th, 2014 at 9:26pm

Latest update. Still taking the d3 in my cheek and allowing to absorb. Cycle ended but has re started on the opposite side. Day 5 of it and it happens to coincide with some major stress as I have had to move my small business this past weekend. Lot of high stress days and wondering about the impact. Had to stick with trex and 02 as abortives as the work had to get done. Could I be starting another cycle so quickly on the opposite side??? Someone tell me no please. Guessing I should get bloodwork before raising higher d3 dosage. Grrrrr Angry

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Re: Anti-Inflammatory Regimen Update and Survey
Reply #248 - Oct 8^th, 2014 at 3:24pm

Hey Birdman,

If you want to address this most recent problem with CH scientifically... stay at the same dose of vitamin D3 and obtain the lab test for 25(OH)D asap. It appears your 25(OH)D serum concentration is at the tipping point.

That said, enduring needless CH attacks is silly when the likely solution to stop these attacks is to increase the intake of vitamin D3.

The simple analogy:

Is it better to know the tipping point in 25(OH)D serum concentration at and below which CH continue?

or

Have the confidence in knowing how to stop breakout CH by increasing vitamin D3 intake?

Regarding CH switching sides... The incidence of this phenomenon is higher than most people with CH think. Results from a survey of 1134 CH'ers conducted by Dr. Todd Rozen and Royce Fishman found the following:

3. Pain location
- 49.1% right-sided
- 44.1% left-sided
- 3.1% bilateral pain: CCH 8.3% vs ECH 1.5%.
- 30.5% stated that pain has changed sides since onset of CH
- 8% stated that pain shifted sides during an individual CH attack

Hope this helps...

Take care and please keep us posted.

V/R, 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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birdman CH.com Old Timer Offline Will try anything once! Posts: 426 x0\|staten island\|USA\|\|0\|0\|NY,New_York Gender:	Re: Anti-Inflammatory Regimen Update and Survey Reply #249 - Oct 9^th, 2014 at 6:32pm So...haven't needed trex since 10/7, but o2 had been used. Lot of shadows, some more significant than others. I hear you on the tipping point but am heading on the road tomorrow morning so it looks like increasing the dosage it is for now. Thanks for reply!! Will keep posted
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