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  1. 10,000 IU/day is very safe during pregnancy.  Doctors in the know about the benefits of vitamin D3 during pregnancy suggest 20,000 IU/day to 30,000 IU/day vitamin D3 during late stages of pregnancies.  It can work relatively fast in controlling/preventing CH.

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    The way I see it, vitamin D3 is the best gift you can give your Tummy Thumper.  It builds a strong immune system.

    • Like 2
  2. Guete Tag ELR,

    Clusterheadaches.com lists 27 CHers in Switzerland at the following link.

    http://www.clusterheadaches.com/states.shtml 

    The Teutonic mind set among Swiss is to obey all laws.  Accordingly, as you've likely found, Swiss are reluctant to admit busting.  I do have a dear friend and fellow CHer in Switzerland who has been CH pain free since 2011 taking the anti-inflammatory regimen with at least 10,000 IU/day vitamin D3.  You can download a pdf copy of this vitamin D3 treatment protocol at the following link.

    http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

    Take care and Viel Glück Alles Gueti,

    V/R, Batch

    • Like 1
  3. Hey Bejeeber, Got the Bat Signal.  Thanks. 

    BP, Grassrootshealth has the home bloodspot test kit for 25(OH)D3 at the following link for $79:  https://daction.grassrootshealth.net/product/vitamin-d-home-test-kit/

    That said, you still need labs for your serum calcium and PTH.  Grassrootshealth doesn't have home test kits for these two analytes.  You need all three labs [25(OH)D3, calcium and PTH] now so it's best to see your PCP for them at the soonest.  The rationale for these lab tests is simple.  If your serum calcium is still within its normal reference range, but not against the upper limit, and your PTH is not at the low limit of its normal reference range, you've room to maneuver with more vitamin D3 loading doses.

    What's likely happening with the heavy CH hits is you're experiencing an allergic reaction to something in your environment.  Pollen, mold spores, dust mite poo, chemical pollutants and some food types are all possible allergens.  I drove through Northern CA down to Shasta then East to Reno for the Annual Navy Tailhook Reunion and Conference last weekend.  Smoke from the fires was fearsome. 

    When allergic reactions happen, we need significantly larger maintenance doses so it's best to go straight to a loading dose for 3 to 5 days then drop back to a maintenance dose of 50,000 IU every 5 days (Doing the math, that works out to 10,000 IU/day) or reduce the dosing interval to every 4 days, 3 days down to 50,000 IU/day until you get the needed labs if you're still getting hit. 

    There are a few things you can do at this point while waiting for labs of your serum 25(OH)D3, calcium an PTH.

    1.  A first-generation antihistamine like Benadry (Diphenhydramine HCL) at 25 mg four times a day.  (You're already taking Quercetin but you can bump the dose up to a max of 3 grams/day).

    2.  500 to 1000 mg/day Turmeric (Curcumin) and 500 to 1000 mg/day Resveratrol have helped some CHers. They're great anti-inflammatory agents.

    3.  You should have the Nutrasal Micro D3 by now so I would take 0.5 mL (40,000 IU) of it as the maintenance dose per the maintenance schedule above and skip the Bio-Tech D3-50 capsule until you get your lab results in hand.

    4.  Make sure you're drinking at least 2.5 liters of water a day.  Staying hydrated while taking higher doses of vitamin D3 is very important.

    5.  Finally, there's diet.  The Atkins-Ketogenic diet has proven effective in at least two RCTs for migraines.  I would start it with a 24 Hour fast drinking only water and taking the protocol supplements.  When you've completed the fast, avoid all sugars and fruit juices.  Sugar is an inflammatory agent and fruit juices are high in fructose.  I would also avoid all wheat products for at least 30 days.  That includes grain oils like canola and corn oil.  Wheat and grain products also tend to be high in Glyphosate (RoundUp) if they're GMO.  Glyphosate is a herbicide.  It plays hell on the friendly colonies of bacteria living in your gut called the microbiome.  Good fats include organic butter, EVOO, avocado oil and my favorite, extra virgin coconut oil.  I would also avoid calcium rich foods like all dairy products.

    You can eat all the free range organic meats, poultry and eggs you want.  A serving or two of wild caught salmon, halibut or Ahi tuna a week is great.  You can also eat all the organic Non GMO green and colored veggies you want.  Limit fruit to a handful a day of dark berries (blackberries, blueberries, raspberries and dark grapes).

    I know all this seems like a hassle at this point, but the payoff is worth it.  Work with your PCP in a team effort with frequent labs for 25(OH)D3, calcium and PTH so you can keep loading without going bust on serum calcium.   The best indication you're getting the maximum benefit from vitamin D3 comes when your PTH reaches the low normal serum concentration and your serum calcium is still within its normal reference range.

    Take care and please keep us posted.

    V/R, Batch

    • Like 3
  4. Hey Maryo,

    The infection triggered an immune system response that reduced your serum 25(OH)D3 concentration below the therapeutic threshold for CH.  All you need to do is start a vitamin D3 loading schedule.  This will elevate your serum 25(OH)D3 back above the CH threshold and you'll be back CH pain free in no time.

    The newest and most effective loading schedule calls for 100,000 IU of Bio-Tech D3-50/day and 0.5mL/day of the Nutrasal Micro D3 (40,000 IU/day) taken under the tongue (Sublingual).  You can order both from amazon.com at the following links

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    https://www.amazon.com/Bio-Tech-Pharmacal-D3-50-100-Count/dp/B000A0F2B2/ref=sr_1_6?dchild=1&keywords=Bio-Tech+D3-50&qid=1631955086&rdc=1&sr=8-6

    https://www.amazon.com/Nutrasal-Micro-D-3-Vitamin-D-3-1oz/dp/B00ESKNGCW/ref=sr_1_7?dchild=1&keywords=Micro+D3&qid=1631955202&sr=8-7

    Take this combined 140,000 IU/day loading dose for a maximum of 5 days then drop back to an initial vitamin D3 maintenance dose of 100,000 IU/week.  That's two (2) of the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 capsules/week.  That works out to 14,285 IU/day.

    When you see your neurologist, ask for lab tests of your serum 25(OH)D3, calcium and PTH (Parathyroid Hormone).  You're shooting for a 25(OH)D3 serum concentration between 80 ng/mL and 140 ng/mL per the following normal distribution curve from reported 25(OH)D3 lab results in the online survey.  You want your 25(OH)D3 serum concentration to be under the right side of the green normal distribution curve between 80 ng/ml and 140 ng/mL.

    7fIH1fP.jpg

    You'll need these same lab tests two weeks after completing this loading dose.  It may be easier to see your PCP for these labs as most neurologists are not into nutritional medicine.

    Take care and please keep us posted.

    V/R, Batch

  5. Jseivers,

    I'm 77.   I was Dx'd with episodic CH in 1997 after three years of CH bouts each spring that lasted 6 to 8 weeks. I was Dx'd as chronic in 2005 by neurologists at the National Institutes of Health (NIH) after a year of daily and nightly CH at an average frequency of 3/day-night.  I'm still chronic.  All I need to do is stop taking vitamin D3 and within a few days to a month depending on my 25(OH)D3 serum concentration, the CH beast jumps real ugly. 

    From my experience and after meeting the several of the top neurologists in the world specializing in the treatment of patients with CH like Dr. Arne May, Dr. Todd Rozen and Dr. Peter Goadsby, all of whom are on the ICHD-3 working group for trigeminal autonomic cephalagiasaging out is not in the cards.

    After 27 years living with CH and 10 years of dedicated research in the pharmacokinetics, pharmacodyamics, and molecular biology of vitamin D3 it's clear to me, that its capacity to control and prevent CH comes through a process called genetic expression that's made possible by vitamin D3. 

    As CHers, we need to maintain a 25(OH)D3 serum concentration between 80 ng/mL and 150 ng/mL to have real control of our CH like pain free > 95% of the time.  That's going to take a vitamin D3 maintenance dose between 10,000 IU/day and 15,000 IU/day for most of us.  Some CHers will need much higher doses.

    Take care,

    V/R, Batch

    • Like 1
  6. Hey Jseivers, Celtic Cluster and BoscoPiko,

    Here is another chart from the oxygen demand valve method of aborting CH study I ran in 2008 that may help explain why the frequency of your CH goes up after repeated aborts with oxygen therapy.  This chart illustrates weekly CH frequency, mean weekly time to abort and mean weekly pain level at start of therapy over the 8 weeks of this study for one of the six chronic participants.  The other six participants had similar charts, just not at dramatic in weekly CH frequency range.

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    As you can see, the weekly CH frequency increased from 12 CH/week at start of this study, up to a maximum of 38 CH/week at the four week mark then dropped to 8 CH/week by the end of week 8.

    This chart helps confirm the frequency of our CH increases with continued use of oxygen therapy up to a point then decreases over time.  At the same time, the mean weekly time to abort drops from 8 minutes at the start of this 8 week study down to 4 minutes by week 8.  The mean weekly pain level at start of this 8 week study also dropped from Kip-7 down to Kip-4 by week 8.

    Why this happens is very interesting.  It involves what is called vascular toning.  Essentially what is happening over repeated aborts with oxygen therapy and hyperventilation is the muscles lining the arteries, capillaries and microvasculature within the trigeminovascular complex tone up (strengthen) like doing curls with a dumbbell strengthens the bicep muscles.  This means these vascular muscles become more efficient in effecting the vasoconstriction (narrowing of the lumen) that mechanically helps abort a CH.

    Of course all this is nice to know, but only a foot note in your headache log if you start the anti-inflammatory regimen with vitamin D3 and the cofactors to control your CH.

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    82% of CHers respond to this treatment protocol within the first 30 days with a significant reduction in CH frequency from 3 CH/day down to a mean of 3 CH/week.  Moreover, 54% of CHers starting this treatment protocol experience a complete cessation of CH in the first 30 days.

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    Over the last six months, these efficacy figures have actually started improving.  This is due in large part to the use of the  sublingual Micro D3 nanoemulsion taken during the initial loading schedule. 

    The existing loading schedule called for 600,000 IU of vitamin D3 taken at 50,000 IU/day over 12 days. It resulted in a mean increase in serum 25(OH)D3 of 60 ng/mL on top of the baseline (starting) 25(OH)D3 serum concentration.

    The new loading schedule calls for 700,000 IU of vitamin D3 taken at 140,000 IU/day over 5 days.  It results in a mean increase in 25(OH)D3 of 70 ng/mL on top of the baseline (starting) 25(OH)D3 serum concentration.

    This new loading dose is made up of two (2) Bio-Tech D3-50 capsules/day (100,000 IU/day) and 0.5 mL/day of the Nutrasal Micro D3 nanoemulsion taken sublingual under the tongue, (40,000 IU/day) for a combined loading dose of 140,000 IU/day.  Both the Bio-Tech D3-50 and Nutrasal Micro D3 shown below are available at amazon.com

    CazDCz8.jpgGaEir5t.jpg

    As this is a more aggressive loading schedule, labs for 25(OH)D3, calcium and PTH are now required two weeks after start of this loading schedule.  These labs are essential to ensure serum calcium remains within its normal reference range.

    The rationale for this new loading schedule is illustrated in the following normal distribution curves for 25(OH)D3 lab results at baseline and after 30 days on this treatment protocol.

    ZVHDiXf.jpgThis new loading schedule will shift the green normal distribution curve to the right so that the mean 25(OH)D3 is close to 90 ng/mL after five to six days.  This also results in a faster favorable and CH pain free response.

    Of course there are speed bumps on the way to a CH pain free response.  The most common speed bump is an immune system response to allergens that release large quantities of histamine.  As histamine to a CHer is like Kryptonite to Superman, this is where a first-generation antihistamine like Benadryl (Diphenhydramine HCL) comes into play.  It blocks the histamine H1 receptors and this helps prevent the neurogenic infrlammation associated with allergic reactions.

    As BoscoPiko pointed out, some CHeers have a reaction to Benadryl.  Fortunately, there's Quercetin.  It's a plant and fruit based flavenoid  that acts as a good antihistamine, but larger doses are needed to get the same response as Benadryl.

    Hope this helps.

    Take care and please keep us posted.

    V/R, Batch

    • Like 3
  7. Hey Bohm,

    Spiny is spot on.  Once you've reached a stable vitamin D3 dose and responding 25(OH)D3 concentration that keeps you CH pain free, annual labs for 25(OH)D3, calcium and PTH are adequate.

    Regarding labs for calcium and PTH after a loading schedule or change in maintenance dose, all your doctor needs to do is annotate the lab order for serum calcium and PTH with the following: "Hypervitaminosis D" and "Possible Hypercalcemia" as the rationale  for these two labs.  Medical insurance companies would sooner cover the cost of these labs than take a hit with a law suit for failing to respond to a physician's lab order.

    Take care and please keep us posted.

    V/R, Batch

    • Like 2
  8. Hey Tony,

    It's not only possible you'll need higher vitamin D3 doses to remain CH pain free, it's also a safe bet with a .99 probability you will need to increase your vitamin D3 intake at some point to remain CH pain free.  This is an important part of the anti-inflammatory regimen treatment protocol or "Batch Regimen" as you call it in Finland, that all CHers taking this treatment protocol need to understand.

    In short, the amount of vitamin D3 you need to take to remain CH pain free is a moving target.  It is going to change depending on the amount of inflammation in your system. 

    A daily intake of 10,000 IU/day vitamin D3 and responding 25(OH)D3 serum concentration of 80 ng/mL (200 nmol/L) may be just fine under normal conditions, but experience an infection, an allergy, trauma, surgery or chemical insult and that vitamin D3 dose of 10,000 IU/day will be insufficient to keep you CH pain free.  It's also important to know that when these inflammatory activities subside, you'll be able to lower your vitamin D3 intake and still remain CH pain free.

    Perhaps, the easiest way to describe this process is with the following info graphic illustrating the relationship between our actual 25(OH)D3 serum concentration and our CH Threshold that's also measured in ng/mL or nmol/L.

    q9av7Py.jpgAs you can see, when our actual 25(OH)D3 serum concentration (green line) is higher than the CH threshold (red line),  we're CH pain free and life is wonderful.  If it's below the CH threshold, the CH beast is jumping ugly making life miserable.

    The important thing to understand about the CH threshold is it rarely remains constant and that it changes with the inflammation associated with an immune system response to infections, allergies, other medical conditions, other Rx medications or chemical insults. 

    This CH threshold can be as low as 47 ng/mL (117 nmol/L) and as high as 250 ng/mL (625 nmol/L).  Even your actual 25(OH)D3 serum concentration varies at the same vitamin D3 maintenance dose.  The following 4-year chart of my lab assays for serum 25(OH)D3, calcium and PTH illustrates the 25(OH)D3 levels I've needed over time to remain CH pain free. 

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    This years pollen season was onerous.  I started elevating my 25(OH)D3 in late April with higher vitamin D3 doses in anticipation of the pollen from the Alder trees that surround our home that peaks in March followed by pollen from the Big Leaf Maple trees that peaks in early May. 

    By mid May I was taking 560,000 IU of vitamin D3 a week (80,000 IU/day) to remain CH pain free.  That drove my 25(OH)D3 serum concentration up to 273 ng/mL (693 nmol/L).  My PCP had no problem with the 25(OH)D3 this high as my serum calcium was still in the green.

    I've since been able to taper my vitamin D3 intake down to 140,000 IU/week (20,000 IU/day).  There's another interesting part of all this.  I spent most of June in Pelican, Alaska fishing Chinook (King Salmon) and halibut.  With frequent rain, the pollen count in Pelican was virtually nil. As a result, I needed only 100,000 IU/week (14,285 IU/day) vitamin D3 to stay CH pain free while there in Alaska. 

    However, as soon as I returned home the end of June, I needed 280,000 IU/week vitamin D3 to remain CH pain free.  This is likely due to residual pollen as we've not had a drop of rain since early may.

    Getting back to the CH threshold chart.  All of us taking this vitamin D3 treatment protocol to stay CH pain free will need to increase our 25(OH)D3 serum concentration at one time or another to counter an immune system response.  This begs the question, How should we do this?

    The method I've found that works best in the least amount of time is to use a combined loading dose of two (2) Bio-Tech D3-50 capsules (100,000 IU) and 0.5 mL (40,000 IU) of the Nutrasal Micro D3 nanoemulsion for a loading dose of 140,000 IU/day.

    CazDCz8.jpgGaEir5t.jpg

    I take this loading dose for one to three days or until I experience a 24 hour CH pain free response whichever occurs first.  I also take all the other cofactor supplements daily.  Once I experience a 24 hour CH pain free response, I start a taper by stopping the combined vitamin D3 loading dose, but continue with the cofactors. 

    Most of us should be able to go for up to a week before sensing an approaching CH or waking up with one.  Count the days since stopping the loading dose until the return of your CH.  At that point I take another combined loading dose of 140,000 IU vitamin D3.  My next dose is one day less than the time in days it took for my CH to return.  In effect, you've done a taper by changing the dosing schedule.  For practical purposes, this is the new maintenance dose.

    You'll know when you can taper the vitamin D3 dose further if you're able to go more than a week taking a single vitamin D3 dose of 140,000 IU.  At that point stick with the two Bi0-Tech D3-50 capsules but drop the Micro D3.

    Hope this isn't too confusing.

    Take care and please keep us posted.

    V/R, Batch

    • Like 2
    • Thanks 1
  9. Hey Jseivers,

    An oxygen flow rate of 10 liters/minute is too low to abort a cluster headache effectively and reliably.  To be effective and reliable, the oxygen flow rate must be sufficient to support hyperventilation. Trying to do this with a nasal cannula is not only impossible but stupid.  Your neurologist and the oxygen equipment providers should have known this.  The Rx for your home oxygen therapy should have been written for an oxygen flow rate of 15 to 25 liters/minute with a non-rebreathing oxygen mask as an abortive for cluster headache.

    I held a patent for a method of therapy with an oxygen demand valve as a CH abortive.  It's now expired.  That patent application was based on a thesis I developed along with results from a pilot study I ran with 7 CHers (one episodic and six chronic).  These 8 CHers used the method of therapy I developed for the oxygen demand valve to collect data on a total 366 aborts logging abort times and pain levels at start of therapy for eight weeks each. 

    The mean abort time for CH pain levels 3 through 9 on the 10-Point Headache Pain Scale using this method of procedure for the oxygen demand valve was seven (7) minutes flat.  364 of these 366 aborts met the goal of an abort in 20 minutes or less for a 99.4% Success Rate.

    Data from that pilot study is illustrated in the following chart.  As you'll see in this chart, the demand valve oxygen therapy (DEVO) resulted in CH aborts three to four times faster than oxygen therapy aborts with an oxygen flow rate of 15 liters/minute with a non-rebreathing oxygen mask.

    KR7rUxL.jpg

    In 2010 I modified this method of procedure to work with any oxygen regulator using what I call the Redneck Oxygen Reservoir Bag System that's made from a new clean kitchen trash bag, a plastic bottle with cap and the bottom cut off, tubing from a disposable oxygen mask or cannula, some electrician's tape and Duck Tape.  The DIY instuctions and photos to make a Redneck Reservoir Bag follow.

    dygSWRa.jpg

    Push the plastic bottle through the 1 inch opening cut off the corner of the closed end of the kitchen trash bag and tape the bottle neck with electricians tape for a gas tight seal. Place additional electricians tape around the middle of the bottle.  This becomes your hand hold.  You can add the oxygen tubing from your cannula to the 0.5 mm opening on other closed corner of the kitchen trash bag and add electricians tape for a gas tight seal.  When you've done this fold and tape the open end of the trash bag with Duck Tape.

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    Make sure the bottle cap is on tight then fill the Redneck Oxygen Reservoir system ahead of time (before your next CH) by connecting the oxygen tubing to the barb fitting on your oxygen regulator then turn off the oxygen supply when bag is filled with oxygen making it snug but not tight.  The bag should hold oxygen for at least 12 hours.

    If used with the following method of therapy, there should be sufficient oxygen in the Redneck Oxygen Reservoir Bag for three CH aborts.

    The Method of Procedure.

    At the first sign of an approaching CH or as soon as you wake up with one:

    1.  Stand with mouth open and jaw dropped like saying the word "Haw" and hyperventilate at forced vital capacity tidal volumes for 30 seconds. Standing gives your diaphragm full range of motion to hyperventilate more effectively.

    2  Exhale forcibly and when if feels like your lungs are empty of breath (they're not), do an abdominal crunch and hold the squeeze until your exhaled breath makes a wheezing sound for one second, then without delay, inhale a lungful of room air and repeat this breathing procedure 10 times as fast and deeply as possible (roughly 30 seconds).  On the last forced exhalation, hold the abdominal crunch/squeeze until your exhaled breath.  Doing this will squeeze our another half to full liter of exhaled breath highest in CO2 content. Then unscrew the bottle cap from the Redneck Oxygen Reservoir Bag and inhale a lungful of 100% oxgyen and hold it for 30 seconds. Remember to replace the bottle cap.

    3. Keep repeating this entire sequence until the CH pain is gone.  Most CHers will take 7 to 8 complete sequences (7 to 8 minutes) to abort their CH.

    If you're hyperventilating with room air properly, you'll start sensing a very slight tingling/prickling sensation across your lips, hands, ankles and feet.  This is called paresthesia and it's caused by vasoconstriction of the capillaries in the skin.  You may even feel a slight cooling sensation across your lower back as the vasoconstriction squeezes blood away from the skin allowing it to cool.

    Effective hyperventilation like this blows off CO2 from the lungs and bloodstream faster than our bodies generate it through normal metabolism.  Lowering the CO2 content of the blood elevates arterial pH making the blood stream more alkaline.  The elevated pH enables blood hemoglobin to have a greater affinity for oxygen so it uploads more oxygen than normal and this sends super-oxygenated blood to the brain.

    The elevated arterial pH also triggers vasoconstriction throughout the body and in particular, the trigeminovascular complex.  This counters the vasodilation that occurs during a CH hit so acts as an abortive.  The super-oxygenated blood flow to the trigeminal ganglia also causes the neuropeptides (CGRP, SP, VIP and PACAP) that are released in neurons and glia within the trigeminal ganglia during the CH pain phase to break down more rapidly and this acts as a CH abortive.  None of this can happen if you don't hyperventilate.

    Build your DIY Redneck Reservoir Bag and practice this procedure before your next CH.

    Your real problem is you're likely vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your CH.  I'll send you a PM with more information. 

    Take care and please keep us posted.

    V/R, Batch

     

    • Like 3
  10. Hey Dagobah,

    I agree with your doctor.  You need to stop taking vitamin D3 but continue taking all the vitamin D3 cofactor supplements.  The first question is,  How long do you need to stop taking vitamin D3?  The answer is based on answers to the next two questions.

    1..  What is the frequency of your CH?  If you're essentially CH pain free, you should be able to coast without any vitamin D3 for at least a week and possibly two weeks without having the CH beast jump ugly then restart.  If you are still getting hit, what is the actual frequency of your CH?

    2.  How much vitamin D3 were you taking for a week prior to the blood draw for these labs?  Whatever it was, I would cut that dose in half when I restarted taking vitamin D3.

    There are a couple important things you can do to help lower your calcium serum concentration.

    1. Drink at least 2.5 liters of water a day.  If you weren't drinking that much water during the 24 hours prior to the blood draw, this could easily explain the higher calcium serum concentration.

    2. Avoiding intake of calcium rich foods like all dairy products will reduce the dietary calcium load and this will help lower the calcium serum concentration.  The 220 mg calcium in the Kirkland Adult 50 + Mature Multi should not pose a problem.

    Bottom line, most CHers will face your present problem at one point or another with calcium serum concentration going too high while maintaining 25(OH)D3 serum concentrations as high as yours in order to remain CH pain free.  This becomes a balancing act to prevent your CH while not going bust on calcium serum concentration.  That will require close coordination with your doctor and frequent lab tests for calcium and PTH until you reach a stable vitamin D3 dose that prevents your CH without going bust on serum calcium.

    This situation us usually due to an immune system response to allergens so that means reducing exposure to these allergens is a must.  Allergens can be environmental (pollen, mold spores, dust mite poo, industrial chemicals or some food types).  A short course of Benadryl (Diphenhydramine HCL) taken for a few days at 25 mg four times a day and Quercetin at 1000 mg/day can help reduce the effects of histamine released during an immune system response to allergens.

    I know this sounds like a lot of work, but in the long run, if it keeps you CH pain free, it's well worth the effort.

    Take care and please keep us posted.

    V/R, Batch

  11. Hey Cloudy,

    The vitamin D3 regimen has a ten year track record of proven efficacy in controlling CH and the maintenance dose costs ~ 50 cents/day.

    A little data on VYEPTI (eptinezumab-jjmr) your doctor may not have explained.

    xNciDsF.jpg

    As you can see from the naming convention used for monoclonal antibodies, VYEPTI (eptinezumab-jjmr) contains murine genes, a polite way of saying mouse genes.

    Take care and please keep us posted.

    V/R, Batch

    • Like 1
  12. Alan,

    If you read through the info at VitaminDWiki on vitamin D3 and Crohn's at the following link, you'll find this treatment protocol my be just what you need to control your Crohn's.

    https://vitamindwiki.com/Search+Results?hl=en&oe=UTF-8&ie=UTF-8&btnG=Google+Search&googles.x=0&googles.y=0&q=Crohn's&domains=vitamindwiki.com&sitesearch=vitamindwiki.com#gsc.tab=0&gsc.q=Crohn's&gsc.page=1

    In particular, read the study titled:  Therapeutic Effect of Vitamin D Supplementation in a Pilot Study of Crohn’s Patients. 

    As you're going to be taking a vitamin D3 maintenance dose that's twice to three times the 5,000 IU/day dose in this pilot study, I'll make a SWAG your response with a reduction in Crohn's symptoms will be even better.  SWAG = Sophisticated Wild-Ass Guess based on over 10 years experience working with CHers taking this vitamin D3 treatment protocol.

    Take care and please keep me posted.

    V/R, Batch

     

     

  13. Hey DD, AlanK, All,

    The 80 ng/mL "sweet spot" (target 25(OH)D3 serum concentration) is actually the mean 25(OH)D3 serum concentration reported by 80% of participants in the online survey who experienced a favorable response to this treatment protocol.  If you look at the following normal distribution chart of CHer reported lab results for 25(OH)D3 after ≥ 30 days on this treatment protocol below, half of these CHers required a higher 25(OH)D3 serum concentration up to 180 ng/mL to achieve a CH pain free response.  What this really means is they needed a larger vitamin D3 loading dose/longer loading schedule and higher vitamin D3 maintenance dose than 10,000 IU/day.

    7fIH1fP.jpg

    I've spent a good deal of time working with the CHers (and their doctors) who didn't respond to this treatment protocol using a 25(OH)D3 serum concentration target of 80 to 100 ng/mL.  What they had in common was their serum PTH was still in the mid-Normal range.  When they increased their vitamin D3 intake with loading doses between 100,000 IU/day and 150,000 IU/day, their PTH dropped to a low-Normal range and they started responding with a significant reduction in CH frequency or they experienced a CH pain free response.  What's also significant is their serum calcium concentration remained within its normal reference range.

    This vitamin D3 treatment protocol has evolved slightly over its 10 years existence.  When we shifted the type of vitamin D3 from the oil-based liquid softgel formulations to the Bio-Tech D3-50 50,000 IU water soluble form of vitamin D3 in mid 2018, we saw an increase in the 30 day significant response rate from 80% to nearly 90% and an increase in the 30 day CH pain free response rate from 54% to 60%. Shifting from the generic vitamin B 50/100 complex to the Methyl Folate + B complex also helped. 

    It's important to note these changes were not made in a vacuum.  This is a patient-centered and patient developed treatment protocol so "we" made these changes after observing the increase in efficacy.  The "We" is critical here as these changes/improvements could not have been made without input, feedback and active participation by the CHers and their PCP or neurologists following this treatment protocol.  Accordingly, in a very real sense, this is Your treatment protocol.  It's also important to note that I have also actively participated in these changes to the treatment protocol taking larger vitamin D3 loading doses elevating my serum 25(OH)D3 higher and taken higher vitamin D3 maintenance doses to maintain that higher 25(OH)D3 serum concentration.  Over the last four months, several of us have taken a loading dose combination of two (2) Bio-Tech D3-50 capsules and 0.5 mL of the Micro D3 nanoemulsion taken sublingual, for a total daily loading dose of 140,000 IU of vitamin D3.  This combination resulted in a rapid and effective elevation of the 25(OH)D3 serum concentration and more importantly, a cessation of CH without going bust on serum calcium or PTH.

    IXaXfL2.jpgGaEir5t.jpg

    The following 4-Year chart of my labs for serum 25(OH)D3, calcium and PTH tells the story.

    hpLNn1Q.jpg

    My PCP had no problem with my 25(OH)D3 serum concentration at 277 ng/mL as my serum calcium remained within its normal reference range and my PTH serum concentration didn't get too low.  He did order a 24 Hr urine collection to make sure I wasn't dumping calcium in urine.  Here are the results:

    Tests: (1) Calcium, 24Hr, Ur w/Creatinine (003324) 28 May, 2021

      Calcium, Urine 24hr        146 mg/24 hr                26-354

     

      Calcium/Creat. Ratio       118 mg/g creat.            14-318

     

    Serum 25(OH)D3 at 277 ng/mL (692 nmol/L). No Hypercalcemia and No Hypercalciuria

    At this point I need to make the following disclaimer.

    The vitamin D3 treatment protocol discussed above is solely for educational purposes regarding potentially beneficial therapies for Cluster and Migraine Headache. Never disregard professional medical advice because of something you have read on our website and releases. It is not intended to be a substitute for professional medical advice, diagnosis, or treatment in regards to any patient. Treatment for an individual patient should rely on the judgement of your physician or other qualified health provider. Always seek their advice with any questions you may have regarding your health or medical condition.

     

    Take care and please keep us posted,

    V/R, Batch

     

     

     

    • Like 2
  14. Hey Dagobah,

    Good on you!  You're on the right track.  Love the headache log.  Changes in your CH patterns are consistent with the vitamin D3 starting to take control over your CH.  Don't be concerned about the total vitamin D3 dose, it's your labs for calcium and PTH that count.  As you're slamming the CH beast and making progress, see your PCP/GP for your labs next week.  As long as your serum calcium stays within its normal reference range and your PTH is above the low normal limit, keep on trucking!

    I would go back up on the loading dose until I was headache pain free for two days then restart the taper by adding a day between loading doses every 5 to 7 days.  You'll know when to slow the taper.

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

    Hugs, V/R, Batch

    • Like 1
  15. Hey Dagobah,

    Good question.  If you're still getting hit with CH, the answer is yuppers, load vitamin D3 at 140 IU/day until completely CH pain free for two full days then start a taper down to a maintenance dose that keeps you CH pain free.  I'll SWAG that vitamin D3 maintenance dose will be 100,000 IU/week ± 50,000 IU/week.

    Take care and please keep us posted.

    V/R, Batch

  16. Hey Dagobah,

    You've got the supplements and basic lab test schedule spot on.  Kat is spot on about doubling the magnesium dose while loading to at least 800 mg/day.

    We're finding faster responses and a higher level of efficacy if CHers load vitamin D3 with 100,000 IU/day (two of the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 capsules) plus 0.5 cc/day of the Micro D3 for a total loading dose of 140,000 IU/day.  We've also found that staying at this loading dose until CH pain free for at least two full days before starting a taper down to an initial maintenance dose of 100,000 IU/week ± 50,000 IU tends to result in a lasting and complete cessation of CH.  Most CHers achieve success when the total loading dose reaches 700,000 IU of vitamin D3 (5 days loading) but some CHers and migraineurs need a total loading dose as high as 1,400,000 IU of vitamin D3 (10 days loading).   The difference appears to be related to BMI and/or an immune system response to something like allergens.

    If you're CH pain free after tapering to the initial maintenance dose, the labs at 30 days is fine.  If you're still getting whacked after two weeks loading, drop the vitamin D3 dose to 50,000 IU/day and see your PCP/GP for labs of your 25(OH)D3, calcium and PTH.  If your serum calcium is within its normal reference range and your PTH has not reached the low normal limits of its reference range, continue loading.

    Take care and please keep us posted.

    V/R, Batch

    • Like 1
  17. Hey Nugget,

    Thank you for the update.  Your 25(OH)D3 response to dose of vitamin D3 is spot on and looking great!

    Before I go any further, I need to ask a couple pregnant questions, What was your serum calcium?  If it was within its normal reference range, there is no hypercalcemia (too much serum calcium), a.k.a., vitamin D3 intoxication/toxicity so your actual 25(OH)D3 serum concentration is no worry no matter how high it goes.

    Moreover and more importantly, what was the frequency of your CH with a 25(OH)D3 serum concentration of 124 ng/mL?  If you experienced a decrease in the frequency, severity and duration of your CH at this 25(OH)D3 serum concentration, what's not to like about that? 

    If there was no change in the frequency, severity and duration of your CH, it's very likely your 25(OH)D3 is still too low as illustrated in the 4-year chart of my labs posted earlier in this thread.  Accordingly, as most CHers have found, increasing their 25(OH)D3 serum concentration with a vitamin D3 loading dose of 100,000 IU/day vitamin D3 until they've experienced a CH pain free response for at least two full days, then taper the vitamin D3 dose back down to a maintenance dose (50,000 IU to 100,000 IU/week, a average vitamin D3 dose of 7100 t0 14200 IU/day is very effective.

    It's unfortunate that too many doctors are unfamiliar with vitamin D3 therapy so parrot the school book comment to maintain an optimum 25(OH)D3 serum concentration of 40 to 80 ng/mL.  It's not their fault.  The medical school curriculum contains only a few hours on nutritional medicine and then it's to remain within the RDA for vitamins and minerals.  This is fine for "normal" people with no active pathology.  Guess what -  we CHers are not "Normal." 

    The study I've been running with over 313 CHer participants since December of 2011, clearly indicates there's an inverse relationship between CH frequency and the 25(OH)D3 serum concentration.  In short, for CHers, a low 25(OH)D3 serum concentration results in a high frequency of CH, and CHers who elevate their 25(OH)D3 serum concentration up between 80 and 160 ng/mL experience a CH pain free response.  This is clearly illustrated in the following graphic from this study.

    7fIH1fP.jpg

    CHers have always been their own best advocate.  They know when an intervention works to lower the frequency of their CH and when it doesn't.  They also know about the side effects of these interventions.

    How you proceed is up to you and your decision.  You can join thousands of CHers who have followed the anti-inflammatory regimen treatment protocol and control your CH effectively, or you can listen to your doctor and suffer.  The choice is yours.

    Take care and please keep us posted.

    V/R, Batch

  18. Hey Gail,

    My wife is 84, loving life and kicks my backside if I don't keep up with her.  She's been following the anti-inflammatory regimen treatment protocol since 2011.  She was a 20 year episodic migraineur until then.  Hasn't had a single migraine since.  I track her labs like a hawk.  Her 25(OH)D3 averages 115 ng/mL (287.5 nmol/L) and her serum calcium id always in the green.   We're both in excellent health and don't take any Rx medications.

    The treatment protocol is simple safe and effective.  Here are the basic steps.

    1. Discuss this treatment protocol with your PCP/GP.  Just be aware too many doctors are unfamiliar with vitamin D3 therapy so tend to be skeptical and say a vitamin D3 maintenance dose of 10,000 IU/day is too high/toxic. It's not their fault.  Most Med Schools have eliminated nutritional medicine from their 4-year curriculum. When you see your PCP ask for labs of your serum 25(OH)D3, Calcium and PTH (Parathyroid Hormone).  The following graphic illustrates the normal distribution of lab assays for their serum 25(OH)D3 concentrations at baseline before starting this treatment protocol and a second assay ≤ 30 days after starting it.

    7fIH1fP.jpg

    The initial lab assays for serum 25(OH)D3, calcium and PTH are important.  They provide a baseline to measure clinical progress in elevating your 25(OH)D3 serum concentration without going bust (too much) serum calcium, hypercalcemia.  Around 1% of the population is already hypercacemic without taking any vitamin D3.  You'll need to know if you're in this 1% category as it will require close medical supervision.

    2.  Pick up the supplements illustrated by brand and dose that I take and suggest to other CHers and migraineurs.  I buy them from amazon.  CHers who stick with these brands tend to have a higher response rate.

    e0ybTAP.jpg

    You'll also need to add Micro D3 nanoemulsion illustrated below.  I buy it from amazon.com.  You'll take 0.5cc/day while loading vitamin D3.  This nanoemulsion of vitamin D3 has a higher bioequivalence than the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 you should also be taking illustrated below.

    ppvQMAU.jpgI1fb9Dm.jpg

    You start this treatment protocol with an accelerated vitamin D3 loading schedule taking two of the Bio-Tech D3-50 capsules/day (100,000 IU/day) and 0.5 cc/day of the Micro D3.  You continue taking this loading dose until you experience a CH pain free response for two full days then start a taper down to a vitamin D3 maintenance dose of 50,000 to 100,000 IU/week Several of us have used this loading schedule and found it very effective.

    The rest of my post above to Madam applies.  Remember to see your PCP/GP for the second set of labs for your serum 25(OH)D3, calcium and PTH.  When you have the results in hand, please take the time to fill out the online questionnaire at the following link.  You can add your lab data for calcum and PTH in the comments section.  To start this survey, click on the following link:
    http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c5ce971022f6

    Take care and please keep us posted.

    V/R, Batch

  19. Hey Madam,

    Thank you for the update and feedback..  Your serum calcium and magnesium  concentrations are fine.  You have two problems. 

    (1) You're not taking enough vitamin D3.  A 25(OH)D3 serum concentration of 214 nmol/L (86.4 ng/mL) is too low for half the CHers taking this regimen.  They need a 25(OH)D3 serum concentration between 90 and 180 ng/mL (225 to 450 nmol/L) to remain CH pain free.  The following chart illustrates the normal distribution of lab tests for 25(OH)D3 reported by 313 CHers at baseline before starting this protocol (black) and after ≥ 30 days on this treatment protocol (green) for CHers who have responded to this regimen.

    7fIH1fP.jpg

    As you can see with the green line, half the CHers under this curve need a higher 25(OH)D3 serum concentration up to 180 ng/mL (450 nmol/L) for a favorable response.

    (2) Your PCP does not understand vitamin D3 therapy.  If he did, he would have known your serum calcium is well within its normal reference range so there is no hypercalcemia, a.k.a., vitamin D3 intoxication/toxicity with a 25(OH)D3 serum concentration of 216 nmol/L so no need to stop taking vitamin D3.

    Were I in your shoes, I would start loading vitamin D3 taking 100,000 IU/day until I was CH pain free for at least two full days (48 Hours) then start a taper by lowering the vitamin D3 intake to 50,000 IU/day for a week or two.  If I remained CH pain free, I would continue the taper by dropping one 50,000 IU dose once a week each week until I got down to 50,000 IU once a week.  If at any time the CH beast jumps ugly, I would go back up to the previous higher dose.  If you can find it, order some Micro D3 illustrated in the following photo.  You can order both the Bio-Tech D3-50  and Micro D3 from amazon if you don't have them.  iherb.com carries the Bio-Tech D3-50 but not the Micro D3.

    https://www.iherb.com/pr/bio-tech-pharmacal-d3-50-cholecalciferol-100-capsules/55186

    https://www.amazon.com/Bio-Tech-D3-50-50-000-200/dp/B00IAQUJH0/ref=sr_1_5?dchild=1&keywords=Bio-Tech+D3-50&qid=1626800584&s=hpc&sr=1-5

    https://www.amazon.com/Nutrasal-Micro-D-3-Vitamin-D-3-1oz/dp/B00ESKNGCW/ref=sr_1_6?dchild=1&keywords=Micro+D3&qid=1626800521&s=hpc&sr=1-6

     

    ppvQMAU.jpgI1fb9Dm.jpg

     

    Micro D3 is a nanoemulsion of vitamin D3 that has a higher bioequivalence than the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 you should be taking.  Once you have it on hand you can take 0.5cc/day in place of one capsule of the D3-50. 

    The following notional graphic illustrates what's happening and what to do.

    q9av7Py.jpg

    If your actual 25(OH)D3 serum concentration is below the CH threshold the CH beast jumps ugly.  As your 25(OH)D3 is att 216 nmol/L, your CH threshold is higher possibly up around 250 nmol/L so you need to load vitamin D3 at 100,000 IU/day until you elevate your actual 25(OH)D3 above the CH threshold for two days then start the taper down to a Maintenance dose that keeps you CH pain free.

    Hope this helps.

    Take care and please keep us posted.

    V/R, Batch

     

  20. Tony,

    The Big Pharma and Big Government Marxists and Elitists on the take from Big Pharma here in the US are trying to do the same thing.  The only way to fix this problem is to vote their evil backsides out of office.  3/4 the members of the House and Senate here in the US have cashed campaign check donations from  Big Pharma so this is a real problem.

    Ultimately it comes down to personal choice.  Do you want good health with access to USP vitamins and minerals at effective doses or Big Government politicians who want to take away your freedom of choice so they can control everything you do.  Politicians and good health do not mix.  This problem exists among members both political parties here in the US, so this is not an endorsement of either political party, merely a statement of fact with ample proof.

    Take care,

    V/R, Batch

    • Like 1
  21. Luis,

    You've got a bug.  Load up on vitamin D3 plus the cofactors and at least 6 grams of vitamin C/day in separate 1 gram doses.  50 mg/day zinc picolinate and 400 to 800 mg/day Quercetin will also help.

    Take care and please keep us posted.

    V/R, Batch

    Take care

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