Hey JT,
Thanks for the update. Sorry you're still having problems. My first suggestion is to relax, maintain the vitamin D3 dose that keeps you CH pain free and enjoy the Christmas season. Although you're now the current record holder for the highest 25(OH)D3 serum concentration at 311 ng/mL on the anti-inflammatory regimen, your serum calcium is still within its normal reference range so there's no vitamin D3 intoxication/toxicity. That said, you should be able to control your CH at a lower vitamin D3 dose so I suspect you've another condition or conditions cooking away.
To put this in perspective, Dr. Coimbra's MS patients on his protocol (very similar to mine except they take 1000 IU vitamin D3 per Kg body weight/day) don't even have labs for their 25(OH)D3 as they're off the scale, too high to measure), but they do measure serum calcium and PTH.
What is your current weight and BMI? Are you taking any other Rx or over the counter medications? If so, what are they and why are you taking them?
What you and your doctor do need to monitor is your parathyroid hormone (PTH) serum concentration. It;s important to keep it low, but not in the single digits without frequent monitoring. With your 25(OH)D3 at 311 ng/mL, it's obvious your labs are being done at Quest Diagnostics or another lab that uses the same Liquid Chromatography Dual Mass Spectroscopy (LC-MS/MS) assay for 25(OH)D.
The LC-Ms/MS assay method is capable of a maximum measurment of 512 ng/mL of combined D2 and D3. As your vitamin D2 intake is likely nil, your 25(OH)D3 serum concentration can be measured as high as 512 ng/mL.
If your labs are being done at Quest, then you need to create an account on "MyQuest" at the following link. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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. It's free. When you've registered, check for any indications of a PTH lab test. If none are listed, call your doctor on Monday and ask for a lab order for PTH. The labs for this regimen include the following:
- 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
This will allow you and your doctor to monitor your serum 25(OH)D3, calcium and PTH over time as illustrated in my labs over the last three years.
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This 3-year log clearly illustrates my 25(OH)D3 has been elevated well above its normal reference range shown in greed to as high as 188 ng/mL. It's been averaging 150 ±5 ng/mL since I switched to the Bio-Tech D3-50 taking one capsule a week in January of this year. You'll also note that my serum calcium remained within its normal reference range the entire time indicating no hypercalcemia, a.k.a., vitamin D3 intoxication/toxicity.
The interesting thing to note is my PTH trace. As you can see it mirrors the calcium serum concentration. When serum calcium concentration goes up, the serum PTH concentration goes down. This is a classic indication of normal calcium homeostasis.
In this case, less PTH means less 25(OH)D3 is hydroxylated in the kidneys to 1,25(OH)2D3, the hormonal form of vitamin D3 thatpulls calcium from the gut and/or bones to maintain serum calcium in its normal reference range. As less 1,25(OH)2D3 is produced, less calcium is being pulled from the gut/bones. In short, our parathyroid glands keep us from experiencing hypercalcemia while taking higher doses of vitamin D3.
I'm an old Navy fighter pilot so when things don't look right, I trade airspeed for altitude and climb up to look things over before making any serious decisions. In your case, the high vitamin D3 intake and resulting high serum 25(OH)D3 concentration tells me your body is fighting inflammation and/or an allergic reaction in what I call a Calcitonin Gene-Related Peptide (CGRP) cascade. CGRP cascades are usually triggered by histamine from an allergic reaction. That makes histamine to a CHer like Kryptonite to Superman.
That a first-generation antihistamine like Benadryl (Diphenhydramine HCL) worked to lower the frequency of your CH is a good indication an allergic reaction is part of your problem.
As an allergic reaction is the likely culprit, the histamine released has turbocharged the neurons and glia in your trigeminal ganglia, hypothalamus and likely other parts of your brain to express CGRP, Substance P (SP), Vasoactive Intestinal Peptide (VIP) and likely pituitary adenylate cyclase activating peptide (PACAP).
This is a cocktail of bad news to CHers as it triggers a circular chain reaction where these neuroactive peptides trigger the release of even more histamine and that histamine triggers the expression of even more of the bad news cocktail. In the mean time, this cocktail of neuropeptides is causing neurogenic inflammation and uncontrollable CH pain.
There are three ways to stop this circular chain reaction.
- Reduce exposure to the allergen to the greatest extent possible. You've taken some steps here but there are others
- Start a week to 10 day course of a first-generation antihistamine like Benadryl (Diphenhydramine HCL) at 25 mg X4/day. You've already done that
- Increase/titrate the vitamin D3 dose until you experience a CH pain free response. You've done that too
I've gone over your posts so know you've already taken some steps to reduce your exposure to some allergens. That said, I saw nothing in your last 14 posts about diet. There's a better than even chance there's something in your diet causing an allergic reaction. Accordingly, I would start the Atkins - Ketogenic diet asap.
This combo diet is not as spartan as one might think. For starters, no sugars of any kind and that includes fruit juices. They're high in fructose and we don't need fructose. No wheat products, bread, pasta, crackers, cookies, cakes or pizza. Avoid grain oils like Mazola and Canola. Not only are these the wrong kind of fats, they're also likely contaminated with glyphosate, a.k.a., the herbicide RoundUp.
Good fats include organic butter, lard, extra virgin olive oil, avocado oil and my favorite, extra virgin coconut oil. You can eat all the organic meats, poultry and eggs you want. A couple of servings of wild caught salmon, halibut and Ahi tuna is great. You can also eat all the green and colored organic Non GMO veggies you want. Limit fruits to a couple handfuls a day of dark berries like blueberries, blackberries, raspberries or grapes.
It's best to start this diet with a two day fast drinking only water and taking your supplements. Doing this will burn through the glycogen (blood starch) stored in your liver. Once it's gone you'll start metabolizing fat and when that happens, hunger pangs go away.
Some things you should do at this point to reduce the calcium load on your system include:
- Avoid all calcium supplements. (the 200 mg in the Kirkland Adult 50+ is OK)
- Avoid all calcium rich foods, i.e., all dairy products and most nuts
- Drink at least 2.5 liters of water a day. This helps flush any excess calcium down the dumper.
I would also start taking Resveratrol and Quercetin as illustrated below. Take as directed on the label.
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These two supplements increase the expression of the vitamin D3 receptors that attach to DNA strands to enable the genetic expression controlled by vitamin D3 that down-regulates the expression of CGRP, SP, VIP and PACAP, the neuroactive peptides responsible for the neurogenic inflammation and pain we know as cluster and migraine headache.
I would also add CoQ10, Turmeric (Curcumin) and Liposomal (fat wrapped) Vitamin C that stays in your system longer.
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These three supplements all act as anti-inflammatory agents. Coenzyme Q10 revs up mitochondria and is good for the old ticker. The liposomal vitamin C acts as a potent antioxidant and a natural antiviral, antibacterial and antifungal agent. Accordingly, I would mosey over to Costco today and pick up the additional supplements and keep your headache diary up to date so you can track any trends. You can also order them from amazon.com.
The goal of all this is to remain CH pain free, but at a lower vitamin D3 dose. It will take time for your 25(OH)D3 serum concentration to fall. Data I've collected so far indicates our 25(OH)D3 burn rate under normal conditions, without any vitamin D3 supplements or cutaneous vitamin D3 from sunlight, drops at a rate of 15 ±5 ng/mL/month.
If you're unable to remain CH pain free at a lower dose, see your doctor for a set of labs including the following and any other labs he thinks you need as there may be another condition cooking away:
BASIC METABOLIC PANEL
CBC (INCLUDES DIFF/PLT)
URINALYSIS, COMPLETE W/REFLEX TO CULTURE
A consult with an immunologist for allergy skin tests is another step in finding out what's cooking. Finally, there are several physicians trained in the Coimbra Protocol here in the US. The following link provides a map with contact data. There may be one near you.
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MS patients on the Coimbra Protocol take as much vitamin D3 as you're taking and many take even more. It's a way of life for them
Take care and please keep us posted.
V/R, Batch