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Hey Cast Iron,
We've seen CH frequency go up when CHers cut back or discontinued verapamil. Good head work sides with the obvious conclusion, If you're following the anti-inflammatory protocol and you're still taking verapamil, it's best to stick with the verapamil dose that keeps CH frequency low.
I've spent the last 10 years analyzing data from the online survey of CHers following this protocol to gain control of their CH and hopefully stop them and direct feed back from CHers. What I've concluded is allergic reactions are the single biggest problem that keeps vitamin D3 from doing its thing to control and prevent CH. As allergic reactions kick off large quantities of histamine and histamine to a CHer is like Kryptonite to Superman, bad news. We need to get the allergic reaction under control first to give vitamin D3 and the cofactors a chance to do their thing.
The best course of action involves taking 3 grams/day each of Turmeric (Curcumin), Resveratrol, Quercetin and Omega-3 fatty acids. These are the best and most effective natural antihistamines we can take short of a first-generation antihistamine like Benadryl (Diphenhydramine HCL) taken at 25 mg every 4 hours throughout the day.
I've also tried a nasal rinse by cupping my hands under warm running water then lowering my nose into the water and inhaling enough water to reach the back of the nasal cavity then blow it out. Keep your head down while doing this to prevent water from running down the back of your throat. 4 to 5 snuffels like this should be sufficient to rinse the area around the Sphenopalatine ganglion or "pterygopalatine ganglion". This is the only ganglion located outside the skull. We have two of them each located on opposite sises of the nasal cavity and they are both connected directly to the trigeminal ganglia on both sides of our brain. Doing this nasal rinse has helped me during the heavy leaf mold spore season.
An alternative to this over the sink nose rinse is to buy one of the Navage Nasal Rinse Systems. They're less expensive on ebay.
The thinking behind the nasal rinse is by doing this a few times a week, we wash away any allergens that have accumulated in the nasal mucus membranes around the Sphenopalatine gangiia on you hit side and this lowers the allergic load. These units come with salt pills the make the rinse isotonic in salinity for less irritation.
It also helps to take at least 3 grams/day vitamin C. I take 8 grams/day by adding two level teaspoon measures of powdered vitamin C to an 8 oz glass of water. I take gulps throughout the day until it is all gone by bedtime.
You may need to increase your vitamin D3 dose and serum 25(OH)D3 concentration. Do this in steps and see your PCP to test regularly for serum 25(OH)D3, calcium and PTH.
Take care and please keep us posted,
V/R Batch
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Hey Cast Iron,
I suspect the lab assay method being used to measure your 25(OH)D3 has an upper measurement limit around 400 nmol/L (160 ng/mL). You need to ask your PCP to specify the LC-MS/MS: liquid chromatography-dual mass spectrometry assay for your 25(OH)D3. This assay method has a maximum measurement of 512 ng/mL for the combined D2 - D3. As your 25(OH)D2 measurement is likely less than 4 ng/mL, this assay method should measure your 25(OH)D3 as high as 508 ng/mL.
If you followed the treatment protocol I had published on the VitaminDWiki web site at the following link, you would have seen the recommended assay be done at Quest Diagnostics with the QuestAssureD™ 25-Hydroxyvitamin D (D2, D3).
http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708
The following chart of my assays for 25(OH)D3 were measured with the Quest Diagnostics QuestAssureD™ 25-Hydroxyvitamin D (D2, D3) assay method.
As you can see, when I stopped taking vitamin D3 for three months in a 25(OH)D3 burn down test, my 25(OH)D3 assay dropped by 45 ng/mL (112.5 nmol/L) or 15 ng/mL per month. I might add that I remained CH pain free the entire time.
How is your head? Are you still CH pain free?
Take care and please keep us posted,
V/R Batch
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ER CARD,
While I was on the Board of Directors at O.U.C.H., we developed a Medical Alert Card for Oxygen Therapy for CHers who had to go to the ER with bad CH. The document is signed by the CHer's neurologist or PCP explaining the bearer suffers from Cluster Headache and needs oxygen therapy as a CH abortive at 15 to 25 liters/minute STAT!
The thinking behind this card was that it would help eliminate most of the Stump the Dummy questions frequently asked by ER receptionists and get the CHer oxygen as an abortive as fast as possible.
Take care,
V/R, Batch
The quality of this image is not that good. Unfortunately, this web portal limits attachments fo 23 KB and that's not enough for the original pdf document.
Take care,
V/R, Batch
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Hey Cast Iron,
Sorry to be so slow coming to the party. As long as your serum calcium assay remains within its normal reference range there's no hypercalcemia, a.k.a., vitamin D3 intoxication/toxicity.
I've kept my 25(OH)D3 up around 450 nmol/L (180 ng/mL) for quite a while as you can see in the 5-year chart of my lab assays for 25(OH)D3, calcium and PTH..
It's presently up around 680 nmol/L (270 ng/mL) due to Fall/Winter leaf mold spores that trigger allergic rhinitis. After many years watching my assays for serum 25(HO)D3, calcium and PTH, my PCP looks at my 25(OH)D3 assay, smiles and then says, "I have no problem with your 25(OH)D3 this high as long as it helps prevent your CH and your serum calcium remains within its normal reference range."
Mast cells, part of our immune system's family of white blood cells, release large quantities of histamine and other proinflammatory mediators when insulted by allergens. The histamine in turn, triggers neurons and glia within our trigeminal ganglia to express Calcitonin Gene-Related Peptides (CGRP) and other neuropeptides. Neurologists tell us the CGRP expressed within neurons and glia is responsible for the neurogenic inflammation and the pain we know as cluster headache.
The bottom line is histamine to a CHer is like Kryptonite to Superman - Bad News. None of the prevents including vitamin D3 work very well during an allergic reaction. Many CHers, me included, have found a combination of 3,000 mg/day Tumeric (Curcumin), 3,000 mg/day Resveratrol, 6 to 8 grams/day vitamin C (taken in divided doses throughout the day), double the Omega-3 dose and Benadryl (Diphenhydramine HCL) at 25 mg 4 times a day all help block histamine effects and this lets the genetically active vitamin D3 metabolite 1,25(OH)2D3 down-regulate the expression of CGRP, other neuropeptides and proinflammatory mediators.
This cocktail of extra supplements can take as little as a day and up to a week to take effect for some CHers. Others will find it makes their CH less severe and more controllable, like easily aborted with oxygen therapy.
I also use a combination of 100,000 IU/day of Bio-Tech D3-50 and 0.5 mL/day (40,000 IU/day) of the Nutrasal Micro D3 taken sublingual as a loading dose.
The Atkins-Ketogenic Diet can help. Avoid all sugars and fruit juices high in fructose. Avoiding all wheat and grain products can also help. If you do eat grain products, make sure they are Non-GMO. Most wheat and grain products are contaminated with glyphosate, the herbicide in RoundUp.. Ir causes all kinds of problems. As a herbicide it kills off the friendly colonies of bacteria living in our GI tract called the microbiome.
A unique aspect of glyphosate’s insidious cumulative toxicity is its ability to get inserted into proteins by mistake in place of the coding amino acid glycine. Glycine is the smallest amino acid – one of the twenty or so building blocks of proteins according to the DNA code. Glyphosate is a complete glycine molecule, except that it has an extra methylphosphonate unit attached to its nitrogen atom.
Hope this helps.
Take care and please keep us posted.
V/R, Batch
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Hey BoscoPiko,
Cluster headaches are very sensitive to serum oxygen concentrations. If the partial pressure of arterial oxygen (PaO2) drops below a given threshold as it will when flying at a cabin pressure equal to 7,000 feet altitude (2100 meters) in most commercial airliners, PaO2 will drop by 30%. This opens the door to the CH beast jumping real ugly.
The same thing happens when we sleep as our respiration rate is as low as it can get while we're alive. The low respiration rate also causes an increase in the partial pressure of arterial CO2 (PaCO2). The combination of low arterial oxygen and high arterial CO2 makes for a perfect storm occurring as most of you know, one to two hours after falling asleep.
If you're an episodic CHer in cycle or chronic and need to fly, take a couple Imitrex (Sumatriptan Succinate) 50 mg tabs an hour prior to takeoff and carry an Imitrex inhaler or Imitrex SC injection pen during flight.
If you're a CHer maintaining a CH pain free status taking a vitamin D3 maintenance dose of 10,000 IU/day and cofactors, take a 100,000 IU loading dose of vitamin D3 24 to 36 hours prior to the flight. The following chart illustrates the changes in vitamin D3 and 25(OH)D3 serum concentrations following a single oral dose of 100,000 IU vitamin D3.
Take care and keep your immune system boosted with vitamin D3.
V/R, Batch
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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.
The way I see it, vitamin D3 is the best gift you can give your Tummy Thumper. It builds a strong immune system.
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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
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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
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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
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.
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
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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 cephalagias, aging 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
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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.
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.
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.
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
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.
This 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
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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
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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.
As 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.
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.
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
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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.
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.
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.
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
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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
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Hey Cloudy,
I've sent you a pm.
Take care,
V/R, Batch
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Hey Adhura,
I've sent you a pm on this topic. Check your inbox.
Take care and please keep me posted.
V/R, Batch
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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.
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
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Adhura and I are in contact. Thanks to all for the assistance.
V/R, Batch
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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.
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
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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.
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.
The following 4-Year chart of my labs for serum 25(OH)D3, calcium and PTH tells the story.
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
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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
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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
Lab tests – Vit D through the roof at 411
in General Board
Posted
Sue,
A glass of Orange juice is a good way to start the day except for all the Fructose. That said you would need to eat 36 naval oranges a day to get 3 grams of vitamin C (Ascorbic Acid). 1000 mg vitamin C capsules are much less expensive and the powdered bulk vitamin C even less expensive. Watch the video of Linus Pauling explain why we need 6 to 7 grams/day vitamin C to prevent disease and illness. He took 18 grams/day vitamin C.
Linus Pauling was 92 when this presentation was recorded. He was awarded 2 individual Nobel Prizes, the first in Chemistry for his papers on Quantum Mechanics and the shape of molecules and the second for Peace for stopping above ground nuclear warhead testing.
He had many critics of his recommendation to take 7 grams of vitamin C per day and even more if suffering from a disease. When he died at age 93, he still had two more Nobel Prizes than any of his critics... and, he had outlived most of them.
Take care and please keep us posted.
V/R, Batch