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Anti-Inflammatory Vitamin D3 Regimen and Survey (Read 240945 times)
Ganem Pyrre
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #675 - Feb 21st, 2017 at 5:44pm
 
I am very new to all of this but have been diagnosed with Chronic Cluster Headaches as a 15 yr old female (just my luck) and have thought this is an amazing idea, considering oxygen is working for me but not as well as what some other people have recorded.
I have been looking around and mentioned this D3 regimen to one of the neurologists at the hospital I went to only to find that the whole scheme is not very common here in England and he knew nothing of it.
I was wondering if there is much research on Cluster headaches in women under the average age and if you have any information for if this could work for me, because neurologist I have seen has never had a woman with Cluster Headaches and have never had a chronic case.
Thanks for this information, I will be passing this on to my neurologist in hopes of success.
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Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #676 - Feb 22nd, 2017 at 8:23am
 
Hey Ganem,

Welcome aboard CH.com.  You've come to the right place.  We know what you're going through with CH and the good news is it doesn't need to be that way.

Regarding your neurologist and his experience with cluster headache patients...  The simple fact remains that most neurologists have never treated a patient with cluster headache (CH) much less had a patient present with an active CH.  There's unfortunately good reason for this lack of experience on the part of neurologists...  We suffer from an orphan disorder with a prevalence of less than one tenth one percent...

That fact aside, there are several surveys of CHers that indicate 22% to 28% of CHers are women.  Moreover, there are several documented cases of children diagnosed with cluster headache below the age of 6 years.

It's also not surprising most neurologists are unaware nearly all CHers with active bouts of CH are vitamin D3 deficient or that taking 10,000 IU/day vitamin D3 and the cofactors acts as a very effective CH preventative.

Check your PM inbox, I've sent you some info you can take to your neurologist.

Regarding oxygen therapy, I've attache a copy of your NHS Home Oxygen Order Form (HOOF).  Print out a copy and take it to your Neurologist when you ask for oxygen therapy.

Take care and please keep us posted.  We have a number of CHers there in the UK who will be more than happy to assist you in sourcing the needed supplements for the anti-inflammatory regimen.

V/R, Batch
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thierry
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #677 - Feb 23rd, 2017 at 2:32pm
 
Hi Ganem,
Welcome on board. Sorry that you had to come here but glad you did as there are lots of understanding and helpful people here.
Should you decide to follow the invaluable advice from Batch to take a high dose of Vitamin D3 and the co-factors (It's called the D3 regimen), there are places online where you can get the supplements easily and a lot cheaper than in the UK. I am across the pond from you in Ireland and I get all, apart from 1 multi vitamin, of the regimen from a website in U.S called iherb.com. Postage is cheap when chosing the right option which i will explain below.
For the multi vitamin i go to a U.K website called bodykind, it is a UK site. This multi vitamin provides the vit A, the zinc and the Boron as well as lots and lots of other very good supplements including pretty high doses of all the B vitamins that Batch also recommends. Biocare is a high quality brand and the bioavailability (how much our body absorbs it) of their products is very high.
this is the link to this Multi, One a day from Biocare. the tub will do for 3 months at 1 tablet per day

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the rest is from iherb.com

Vit D3, 1 softgel/day. 10000iu

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Magnesium, 1 capsule/day 500mg

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Calcium citrate, 2 capsules/day 500mg

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Fish oil, 2 softgels/day   2400mg

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Super k, 1 softgel/day

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It may seem like a lot but if you do up the cost per day, you will find that it is just a few pences/day. It has the potential of getting you pain free, as it does for a lot of us.
I have taken Batch's advice to go on the D3 regimen 4 years ago and I have been pain free since.

To keep postage costs down, pick the option that allows no more than 4lbs weight per packet. It tells you the weight as you ad the items to your basket. If you need to order more than that, do 2 orders. You should receive the goods in about 2 weeks. It is important to pick the cheapest postage option because if you pick any of the other options you are likely to be hit by customs import taxes.

If you have any more questions, do not hesitate to ask.
All the best
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« Last Edit: Feb 23rd, 2017 at 2:33pm by thierry »  
 
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Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #678 - Feb 24th, 2017 at 12:26am
 
Thierry,

As expected... an excellent post.  Thank you for reaching out to Ganem with all the great information...

V/R, Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #679 - Feb 24th, 2017 at 10:34pm
 
Hi my old friend Batch ,Thierry and Ganem
I get nearly all of mine from Just Vitamins uk,
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I get my D3 from Amazon U.K and buy the healthy options 5000 i.u softgels. 
Just getting my precursors before an episode now.  Have been taking 25 mg nytol nightly, but will split tablet morning and evening after Batch's post elsewhere.  Have been loading D3 for about 2 weeks.
Fingers crossed I don't get hit too bad this year.
Kind regards
Ian
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thierry
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #680 - Feb 25th, 2017 at 11:28am
 
Hey Radar,
while being on the regimen for the last 4 years, i would get slight shadows around spring and autumn time as that would be the time i would usually go into a full violent cycle for 3 to 4 months.
Batch then advised that i take a good probiotic on top of the regimen. I have started doing that daily over just a year ago. Since then, even the shadows have disappeared.

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I also take,from Batch's advice, a spoon of turmeric in warm milk nightly before bed.

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It is an Indian herb, totally natural anti-inflammatory.

Living a Happy Pain Free life now 

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #681 - Feb 26th, 2017 at 5:32am
 
I've just read, too much alcohol can affect calcium absorption?

Hoppy
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #682 - Mar 18th, 2017 at 6:55am
 
Hi Thierry
Thank you very much for the extra.  The one thing I dont take is the probiotic, will add that in.  Getting shadows but no pain.  Last week I started the curcumin which seems to have a positive effect as well.

Ian (Radar)
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #683 - Apr 11th, 2017 at 9:58am
 
I tried this therapy and found almost no change in my CCH's. 

I know there are probably other contributing factors at play, but it was a bummer for me.  However, I am giving it one more try. 

I am also going to attempt to go with a high fat/protein low carb diet to see how I do.  I have realized that I need to watch how much of certain cheeses that I eat because they can contribute and I know that ANY alcohol is too much. 

Making significant lifestyle changes are probably a good idea as well, such as exercise. 

I plan on taking it one day at a time.   Undecided
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Multivitamin
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #684 - Apr 16th, 2017 at 6:44am
 
D3 didn't show the great results others had here so I did plenty of research and remain on my conclusion that some of us might have other conditions present who prevent the full potential. I still believe d3 is powerful in many ways but it might not be enough for everyone.

I did change my diet mid cycle and have drastic positive results. Might be a coincidence but I don't think so. I have had Candida overgrowth under suspicion (hello Western world sugar and carb heavy diet) for a while now (even before this year's cycle due to many other health issues present that may be tracked back to your gut)- or even the next stage called leaky gut syndrome. Google both if you haven't yet. Besides many other things this can affect both your liver and more importantly your kidneys. And yes, here we go - the kidneys play a major role in d3 activation...further, chronic kidney disease has many stages before it actually causes clear symptoms.

I got all checked up and will receive results next week and report back.

A lot of cross reading brought me to this diet set up below. There are multiple reportings around the web of people finding relief with similar approaches. I know others said it didn't help but you have to consider it's very hard to plow through with no cheating and stick with it for awhile to see actual results.

I don't think this neither cause nor cure for CH but it might be an additional  powerful band aid.

It takes time to rebalance your digestive system which is seen as the host for ones immune system and since recent years scientifically researched as actual trigger for many nasty things, many of them mostly thought of being a brain issue whilst it actually might originate from an imbalanced gut system (depression for example...).

There is a direct signalling path between your gut and the Hippothalamus !!

If you cheat or don't allow enough time, you might not be able to actually evaluate it. (The extreme case of leaky gut syndrome can take a year plus to heal !)

I also don't advocate to try this at home before you are as sure as possible that you don't have anything else going on. (Diabetes or whatever)

Buy urine test strips in your pharmacy and check your PH, protein, ketone levels 3 times a day. I am for example constantly at the bottom PH level throughout the day which means my body is way too acidic. You can up your PH level with looking into this:

Remove completely :

- sugar (and no sugar means no sugar - no energy drinks or soda!)
- meat of all kinds
- gluten
- cow diary
- seafood
- alcohol (goes without saying)
- careful with some fruits like bananas or pineapple
- go easy with coffee or remove it. Coffee is very acidic
- no external prepared food as you don't know what's actually in it
- low proteins, as too much can be bad for your kidneys if my theory is on the right track

Basically Google purine high / low foods

There is plenty left you can eat, and thanks to the current general Western world "healthy life style trend" pretty easy to obtain the ingredients.

You can have a well balanced diet with enough of calorie intake with choices of the below. All prepared at home only !

- vegtabels (mostly all green leafed ones, no tomatoes)
- goat and sheep cheese
- carbs from spelt, self baked spelt bread (technically not gluten free but spelt is a very old heritage grain that seem to be tolerated well)
-cold pressed oils like coconut, hemp etc (omega 3 rich)
- salt water fish, frozen (like Pacific salmon)
- cooked eggs are potentially not low in purine but I think I can tolerate them
- berries mostly blueberry, raspberry and blackberry, buy frozen
- Butter is fine as well, doesn't count as cow diary product
- chia seeds
- etc etc

I make sure to have lots of oil and butter and spelt carbs with my food. I believe I have a way higher calorie intake then before but lost 10 pounds in 3 weeks. (This is not that great losing so fast !!! But it shows me something wasn't right before)

Caution - Potatoes for example are a classic, nutrition rich ingredient for a low purine diet, however I felt I had more attacks again when I had a dinner with potatoes so after research I found that there are potentiel cross allergies present with pollen allergies... (I don't tolerate Arlen pollen which is high in early spring. Potatoes and carrots share the same allergen )

I do that since around 3 weeks and have zero attacks for many days to 1 attack coming from hourly 8 attacks per night. The 1 remaining attack is extremely mild and takes 5 minutes with o2. I am not on the strict d3 regimen anymore, jist did it one week and I just try to keep my levels in a normal range by supplementing once a week 20k but this both might play well along of course.

Sugar and (wheat carb) witdrawel is a very though one. I still recommend consider it, even if it doesn't help CH you allow your body to detox for a while.

Again, be sure you don't have anything else going on that might be affected from such drastic change. Maybe ask a doctor for advice first.

Exercise can good or bad, again here depends on potential side conditions one might have. If I am going to heavy on my neck for example, I can pretty much count on having an (mild, but still) attack the next day. (Nitro stress can up nitro oxide levels )

I might draw wrong conclusions here and am happy for any additional discussion.
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Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #685 - Apr 17th, 2017 at 3:17pm
 
Hey Multivitamin,

Interesting post. I'm sorry the anti-inflammatory regimen isn't working better for you.  Have you tried the latest version at the following link?

Be sure to share a copy with your PCP or neurologist when you ask for the suggested lab tests. 

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It's been my experience that until CHers have tried everything in the attached and have labs indicating the 25(OH)D is between 80 and 100 ng/mL, they haven't followed this regimen close enough.

If they have tried everything and their 25(OH)D is up between 80 and 100 ng/mL, there is still another option left to try...  It requires close medical supervision by a PCP who buys into it with frequent labs for serum 25(OH)D, calcium and PTH so I generally take this option off line for discussion.

I'm not sure I go along with all the suggested food types to avoid... Fresh frozen wild Alaska salmon is a staple around here.  I've still got 40 lbs of King and Silver salmon in the freezer from last year and we make the first of three fishing trips to Pelican Alaska in mid May for a two week fishing trip to hit the spring Chinook (King salmon) run.

Avoiding sugar is a great suggestion.  It causes inflammation in the arteries that leads to plaque buildup.  Gluten is another item to limit or avoid if you're still getting hit.

Take care and please keep us posted.

V/R, Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #686 - Apr 17th, 2017 at 7:22pm
 
Batch wrote on Apr 17th, 2017 at 3:17pm:

I'm not sure I go along with all the suggested food types to avoid... Fresh frozen wild Alaska salmon is a staple around here.  I've still got 40 lbs of King and Silver salmon in the freezer from last year and we make the first of three fishing trips to Pelican Alaska in mid May for a two week fishing trip to hit the spring Chinook (King salmon) run.
V/R, Batch



BOY HOWDY! on the spring Chinook Batch.....the two best meals I've EVER had in my life were
Columbia River Spring Kings (one smoked white, the other bbq'd red)...the memory brings bliss.....including of the oil dripping down the chin....OH MY................Alas quite rare now....bet the Pelican brand pretty darn good.....the Silvers are good for giving away IMHO...different flavor
I don't care for........................

I also recall one particularly crusty fisherman's boat in AK...in the head he had a sign: Women only....men piss over the rail!". SO...be sure to check the windsock...you should be purty good
at that.

Good fishin"

Best

Jon
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #687 - May 13th, 2017 at 5:05pm
 
Just took 2 days and finished reading this great thread, thanks to all who made it possible!   I am 64 and think now that I have had clusters for most of my life.

I used to get them about twice a week during spring and fall 25 years ago.  They were KIP 6 or so and dissipated with a sleep cycle.  I never got them diagnosed, and just toughed it out.  They went into remission for almost 20 years...

Then came back with a vengeance 3 weeks ago "out of nowhere"  or so I thought until I finished this thread.  I thought they were all sinus related headaches until the allergy doc ran a CT scan this Tuesday and determined my sinus was normal.  The congestion sure had me fooled for all these years.  She diagnosed cluster/migraines.

I got into my PCP this Thursday and had a KIP 9 on the way to his office.  I was a basket case upon arrival.  He did a great job and within 7  minutes I had an Imitrex injection and was on 15 LPM O2 in a non rebreather mask for the first time.  I finally had relief for the first time... and was amazed my sinus congestion just disappeared.  He gave me a script for 100 mg Imitrex and asked that I report in each day, and he would evaluate my treatment on Monday... if I thought I could handle it that long.

Thursday had a KIP 9 and a KIP 7. 
Friday KIP 5, 6, and and an 8
Sat (today) so far a KIP 4 and an 7.

I had part of the regime in place for the last 5 years:
1,000 IU D3
1 Kirkland Multivitamin
1 Kirkland Super B complex
400 sometimes 800 mg Magnesium Oxide
1000 mg Vitamin C (not in the program but for colds/etc.)

But I was missing the following key parts: (These added this Friday)
50,000 IU D3 sublingual in 2 divided doses (for 1 week) with the program taper to 10,000 IU D3 maintenance
1200 mg Kirkland Fish Oil
Working on getting K2 per the program.

Now my question about why I might of gotten "hit" so hard this spring.  First, it was a terrible winter/transition here in OH.  My truck was also covered in oak and pine pollen for 2 weeks.  But I also started allergy shots 18 months ago.  I am now on the "full maintenance" level, with injections once a month.  The treatment has helped my bronchial/lung congestion, in that I am very clear.  I am wondering if this allergy treatment aggravated the CH?  I am not taking any antihistamines.

BTW after the KIP 8 cleared today, I went down to the shop and made a non rebreathing mask to attack to my shop O2 supply.  So I will have that going forward.  But it is not portable.  Do you folks have small tanks in your car?

Also what do you mean by "shadows"?  During the past 2 months I have had multiple times where my peripheral vision thinks someone has entered the room, but when I focus on that area, it is of course empty.  Finally, my precursor is my right nostril getting near 100% inflamed closed and pressure above right eye. If my nose is clear, I am pain free...  I have been "stuffy" for 6 to 8 weeks, but pain free.  Could that have been a precursor to this break through?

BTW forgot to add: Searched 25(OH)D data from about 5 months ago... I was 31 ng/mL

Again, thanks for all who labor here helping us newcomers!
Dave
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #688 - May 13th, 2017 at 8:02pm
 
Hi and welcome Dave

This thread is an epic read and you'll have seen how the "recipe" has improved over the years as Batch has tweaked it so that it is successful for more and more people. What will make good reading for you with all the latest info in one place is at the following link:

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It is great that you got to experience just how good an imitrex injection is. However I'm confused by your PCP then giving you a prescription for the tablet form. Whilst this can kill off a CH, it can take 20 minutes or so to take effect, which is a long time for a CH, which is why people normally use either the injection or the nasal spray.

Oxygen also works great and you can normally use it by itself without needing the imitrex. Are you getting your own O2 set up so you can use it whenever you get a CH? O2 has the benefit that you can use it multiple times a day, whilst with imitrex you are normally limited to just 2 per day.

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From your question around the allergy treatment and it impacting CH, it is hard to be certain, but I'd think it be more likely that the allergy treatment is just controlling the symptoms of the allergy, but there is still a lower level allergic reaction happening which is likely to be a strong CH trigger.

Batch has often posted how high pollen levels impact his CH with him taking additional measures to keep himself CH pain free at that time of the year.

O2 cylinders come in a wide range of sizes from the large, heavy ones that are great for at home to smaller ones which are more portable. Some people have smaller ones in their car for when out and about. I've even used one which will fit in a backpack. The other alternative for when mobile is to use imitrex injections / nasal spray as you can't take oxygen everyone, like if you fly somewhere.

So it is all about having options for how you kill CH so you're always prepared with at least one option whilst in cycle.

Shadows as low level CHs which can often hang around for a while but you can kill them off just like you can a full blown CH. But other things can help with options including energy drinks (must have taurine and caffeine) or hot / cold air / showers and more.

The visual thing around your peripheral vision is possible an aura which whilst more common with migraine is something that some people get with CH too. With aura, if you close your eyes, you can still see it.

The stuffy nose / eye impacts are due to the trigemenal nerve during a CH, with this having branches around the eyes, nose and jaw, with it triggering symptoms where it goes to.

Are you working with a headache specialist? Whilst you have a PCP who clearly is doing what they can, CH is best treated by someone with skills and experience beyond what most PCPs, even most neurologists have.

I hope this helps, but ask all the questions you have.
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #689 - May 14th, 2017 at 8:00am
 
I wrote, Well! It's been a long road trying to find the culprit of my constipation, but a month or so ago I stopped taking 5000iu D3 soft gels/day together with Life Extension K2, and started taking Swisse Vitamin K2 m7 + D3,1000iu 4/day. I also changed from Magnesium Citrate to Magnesium Chelate 400mg/day, and all's good now.

Well here we go, not, because the Swiss I was taking have been out of stock for the past couple of months, so I started back on the vitamin D soft gels 5000iu/day and wo betide the constipation is back, why is that ?

Cheers Hoppy
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #690 - May 14th, 2017 at 11:35am
 
Hey Hoppy,

There are too many moving parts to your problem to make a SWAG on causality...  However, adding more roughage to your diet as well as a few handfuls of almonds and drinking two liters of water a day should prevent the "Clinkies."

It's also possible your microbiome is in need of a boost... You can do this by taking a good probiotic until the bottle is empty...

If that fails, keep doubling the magnesium dose until you have lift-off and need seat belts to remain seated on the throne...  Smiley

Take care,

V/R, Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #691 - May 14th, 2017 at 5:33pm
 
Thanq Batch for getting back to me, and I will follow your recommendation until I have lift-off  Smiley

Cheers Hoppy
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #692 - Jul 14th, 2017 at 7:48pm
 
Hi Batch,

When the VDRs in the Hypothalamus 'see' an influx of D3 metabolites, is the time of day D3 is taken relevant to Circadian rhythm?
Does our Hypothalamus or even our whole body think the sun is still up if we take 10,000IU of D3 in evening darkness?

Any insight appreciated.

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #693 - Jul 15th, 2017 at 1:29am
 
Hey CH Brain,

Great questions... Unfortunately, I haven't a clue if the chemical processes that control our Circadian rhythms have any effect, one way or the other, on 1,25(OH)2D3, the genetically active metabolite of vitamin D, the vitamin D receptor (VDR) or the vitamin D receptor elements (VDRE) located on genetic sequences within neuronal nuclei throughout the brain, hypothalamus or trigeminal ganglia. 

I also doubt anyone else has an answer to your question either as the sophisticated tests, if they even exist, would require a quantity of neurons from the hypothalamus and trigeminal ganglia in order to perform the test...  The alternative would be to tag the chemicals involved in Circadian rhythms with a radioactive isotope then search the brain with very sensitive detectors to see where they land... 

I've got most of the neurons I came with and I'm not willing to part with any of the remaining neurons to find an answer...

What I can say is the process of populating VDR and VDRE with molecules of 1,25(OH)2D3 is explained by the Law of Mass Action as follows:

At its most fundamental level, the law of mass action involves the interaction of a drug or nutrient, in this case, 1,25(OH)2D3, the genetically active metabolite of vitamin D3, with its receptors at the genetic level.

Law of mass Action:
  • The combination of drug (also called ligand) and receptor depends on the concentrations of each
  • The amount of drug-receptor complex formed determines the magnitude of the response
  • A minimum number of drug-receptor complexes must be formed for a response to be initiated (threshold)
  • As drug concentration increases, the number of drug-receptor complexes increases and drug effect increases
  • A point will be reached at which all receptors are bound to drug, and therefore no further drug-receptor complexes can be formed and the response does not increase any further (saturation)
What this law doesn't explain is that molecules of 1,25(OH)2D3 are only temporary occupants of VDR and VDRE as they are consumed by the cell after a period of time and broken down into component molecules that are either reused by the cell or excreted.  This means we need to replace the cellular concentration of 1,25(OH)2D3 on a continuing basis to enable the genetic expression of peptides that keep us CH pain free.

We also know that the body's master clock, the suprachiasmatic nucleus, or SCN, located in the hypothalamus controls the production of melatonin, the hormone that makes us sleepy.  As the hypothalamus has roughly the same density of VDR as the trigeminal ganglia, it's not unreasonable to expect a greater release of melatonin with the intake of vitamin D3 at physiologic doses (3,000 to 5,000 IU/day) and therapeutic doses (≥10,000 IU/day) will result in better, more restful sleep.

What does help control our Circadian rhythms is the presence of light and in some cases sound.  If we go into a dark room, with all the lights out, radio, iPhone, TV and stereo off then lie down... our sleep will be more restful...  It also helps to drink only water during the two hours prior to bed time and to empty the bladder right before you lie down...

I've some excellent graphics that illustrate these and related processes. Unfortunately, the crony capitalists at PhotoBucket have seen fit to hold all the photos and graphics uploaded to their site hostage for the tidy sum of $400/year to enable 3rd party hosting...

Their unannounced, unilateral action has wreaked havoc with millions of users and hundreds of thousands of websites using PhotoBucket as an image hosting website... including all my posts here at CH.com containing graphics and photos as well. 

I'm presently researching alternatives to PhotoBucket.

Reading between the lines, I suspect you have a reason for your question...  Care to share it with us?

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
pete_batcheller  
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #694 - Jul 15th, 2017 at 6:42pm
 
Hi Batch,

As we don't get enough D3 from sources other than sunlight, I was simply wondering if the act of D3 supplementation and the timing of the dosing schedule had any impact on circadian rhythm. To that end, at least in CH, I've answered my own question. On the regimen without nocturnal attacks quality of sleep and life is much better.
No real 'between the lines' here Batch!
Researching Seasonal Affective Disorders (SAD) and other light affected sleep/wake, or circadian disorders was something of interest me.
Your posts are thought provoking and this thought had been on my mind for some time, so I just wanted to ask.

I've seen the Photobucket problems too, Batch.
This is not good for your work, those images are priceless in explaining things to us.
That manoeuvre killed a bunch of other Fora in which I participated. Killed them stone dead, very few posts in the past year.
We had an image host called PostImage hooked to a forum which enabled users to directly upload images on the forum and for forum admin to collect these images into a database. For many years this worked well. PostImage had a problem when they got the bill from their new cloud storage provider. I also don't know who runs them and have had no luck in deleting pictures once posted.
Good luck with the image hosting Batch and thanks very much for the reply.

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Maybe this can be hooked to the forum?
If it still works, it was a fantastic tool for forum users.

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #695 - Jul 15th, 2017 at 8:59pm
 
Hey CH Brain,

I started using imgur.com last night and it appears to work just fine.  All the same features as PhrodoButkis that screwed the pooch for us and more...

Take care,

V/R, Bath
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #696 - Jul 15th, 2017 at 11:48pm
 
Thanks for the tip Batch.
I'm glad your image host is working and I shall suggest imgur to a few people in need.

I have a second question re: the D3 regimen and concomitant use of plant phytosterols to lower cholesterol.

Do you know if plant sterols/stanols impede the absorption of any of the regimen's fish oils & olive oils, or affect the uptake of the regimen or co-factors?

The labelling on the sterols/stanols says to take one 20 minutes before food and I'd like to know what you think about leaving time for the regimen to be absorbed before using a sterol/stanol. My understanding is they sterols/stanols attempt to block lipid absorption in the gut, but I could be way off the mark.

Thanks again for your replies.
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #697 - Jul 16th, 2017 at 11:38am
 
CH Brain,

Another excellent question.  A few years back... well... more than a few... like 17 years ago, I was being treated at NIH Bethesda, MD for an eye condition where my retina were trying to reject me...  It's called uveitis, an autoimmune inflammatory disorder of the uvea. 

As one of the duty guinea pigs for clinical trials for uveitis at the National Eye Institute at NIH, they first put me on prednisone...  Bad move... No food was safe around the kitchen, a box of graham crackers had a half-life of less than 30 seconds, the frig had a padlock, and still I ballooned up from 180 lbs to 230 lbs in a matter of weeks...  One month into the prednisone protocol, and I pulled the plug telling my doctors to put me on another protocol as I couldn't afford to buy new suits every two weeks...

They put me on Sirolimus, also known as rapamycin, a potent immunosuppressant used in kidney transplants to prevent rejection.  It's also used to coat stents that hold coronary arteries open.  Sirolimus had a terrible side effect of elevating my total cholesterol... from 150 to 250 in one week. 

My PI for this trial, an MD with two Ph.Ds one in genetics and the other in immunology said this would happen and that I had two choices... Statins or natural methods of lowering the cholesterol.  I've never liked statins so opted for a regimen of Cholestoff and Omega-3 fish oil coupled with more exercise and a spartan diet. 

It worked...  In less than two months my total cholesterol was back in the 150s and I was still taking the sirolimus.  That got me thinking... so with a degree in Chemistry, I broke out a couple of my organic chemistry and biochemistry text books and did some reading...

Sterols are very similar in molecular structure to cholesterol.
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I've taken CholestOff a few times right after starting the anti-inflammatory regimen to see if it provided any improvement in preventing CH.  It didn't appear to have an effect in either direction...

For reference, a Stanol is the product of esterification where a sterol is combined with a fatty acid to form an ester.  They're also used to lower triglycerides and low-density lipoproteins (LDL).

I'd also like to point out that I've passed every eye exam with no evidence of posterior uveitis since starting the anti-inflammatory regimen.

Hope this helps answer your question.

V/R, Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #698 - Jul 17th, 2017 at 12:43am
 
Thanks again Batch.

In the 12+ months I've been taking sterols/stanols my own anecdotal observations match yours with regard to efficacy of the D3 regimen.
It still works fine.
However, when a shadow breaks through, the fear of the beast 'jumping ugly' as you often put it here, does make me think very hard about what I may be doing wrong.
CH breakthrough for me seems almost always attributable to infection, injury, allergy or dietary lapse.
For me, it's nothing a Tablespoon of cement, a D3 loading dose and some vigilance won't fix.

I laughed at the Prednisone side effects Batch, as they were the same here. Dexamethasone once (Nasty stuff) and many courses of Pred over the years took their toll.
Apart from thinned skin and bone problems, any food stuff that was not bolted down was duly eaten.
It astounds me the ravenous hunger that can come with Pred, I felt like Sylvester the cat eyeing off Tweety as he turns into a roast chicken in those old Merrie Melodies cartoons. Everything around me looked to be edible.

A tip to me from a very wise elder on clinical trial participation: "The Guinea Pig can't say no, but you can".
Equipped with that newfound understanding, I've been able to both participate in trials and also know when to pull the pin and leave them too. A lot of us feel obliged to comply, both for the trial and for our CH relief. It helps greatly knowing when to walk and that you can.

Indeed, you've answered my question and then some, Batch.
Thanks again and PF days to all here.

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #699 - Jul 17th, 2017 at 3:24am
 
Quote:
A tip to me from a very wise elder on clinical trial participation: "The Guinea Pig can't say no, but you can".
Equipped with that newfound understanding, I've been able to both participate in trials and also know when to pull the pin and leave them too. A lot of us feel obliged to comply, both for the trial and for our CH relief. It helps greatly knowing when to walk and that you can.


An comment re trials...totally unconnected to CH....but important...at least in my life.

Your wise elder is indeed wise....my experience only slightly different. I have participated in several trials for a COMPLETELY different ailment. Danged hard decisions...BOTH times. NO REGRETS upon
hindsight...which of course is the EASY view. As the elder said....ALWAYS my choice........

One was neither good nor bad...one was...by chance...successful. I'd do it again...and in fact...my
prognosis calls for another in the future...oh well.

Make your decisions CAREFULLY folks...get ALL the info possible...then...make a choice... and damnit that's IT! The good part.....for 2 and 1/2 yrs I was "special patient" material. Total access to Doctors...they answered my phone calls (now that aint normal)...appts any time I wanted...solicitous consideration of ANY request...coordinators and assistants at beck and call....a friendliness just  a little beyond normal. It was what health care should be for all...but is truly only for those who  mean MONEY. Like clinical trial members......it WILL spoil you...............

Now...I'm a survivor...and been shuffled off to folks outside the trial. NOT any less concern or treatment opportunities...but lesser nonetheless...quite obvious that i'm just another on the treadmill...it is more than a little jarring...ifn you're not prepared........................

Best

Jon

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