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xxx

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  1. Hey Ryan, Understand the cluster headache beast has been jumping ugly on the back of your eye and side of your face on one side of your head. If you want to stop this beast from doing a scrum inside your head and get back on the playing field, I've sent you a PM with the "How To." Take care and please keep us posted. V/R, Batch
  2. Hey Jeler, Thanks for the feedback on your CH and lab data. What brand/type of vitamin D3 are you taking? Having worked with over 100 CHers a year taking this regimen since December of 2010, your best bet is to continue your present dosing with this regimen and test again in 3 months. It's important to ask your PCP/GP to order labs for your 25(OH)D, calcium and PTH to get a good sensing of your calcium homeostasis. Take care, V/R, Batch
  3. Hey Kat, The liquid softgel vitamin D3 will work just fine. There's no need for additional calcium as long as you're taking the Kirkland brand Adult 50+ Mature Multi. It is formulated with 230 mg of calcium and coupled with normal dietary calcium, you should be OK. Remember to double the magnesium dose to 800 mg/day during the 12-Day accelerated vitamin D3 loading schedule. Split the dose to 400 mg magnesium in the morning with breakfast and the other 400 mg with the evening meal. Doing this should reduce the probability of osmotic diarrhea. Take care and please keep us posted. V/R, Batch
  4. Hey Kat, I'll echo CHfather's comment to start the anti-inflammatory regimen now. You'll need a round of labs for your serum 25(OH)D, calcium and PTH after 30 days on this regimen anyway. We can reverse engineer your 25(OH)D3 results to come up with an estimate of your starting concentration. I'm in the process of updating the posted version of this treatment protocol on my webpage at VitaminDWiki at the following link with a change in the suggested type/brand of vitamin D3 from the oil-based liquid softgel 5,000 IU vitamin D3 formulations to the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 capsules. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 I and many other CHers have found the Bio-Tech D3-50 to be faster acting with a higher bioequivalence than the liquid softgel formulations at the same dose. What this means is more CHers respond faster to this treatment protocol. The following photo illustrates the supplements I take. You can order these supplements from amazon.com and iherb.com whichever has the best price. I'd like to point out that at 22 cents per capsule taken once a week, the cost of this form of vitamin D3 is ~ 3 cents/day. Two of the 5,000 IU liquid softgels cost 12 cents a day. Dosing with the Bio-Tech D3-50 is different when it comes to the maintenance dose. I've been taking one (1) of the Bio-Tech D3-50 capsules a week. I think this is a good starting maintenance dose after the 12-Day accelerated vitamin D3 loading schedule illustrated in the following notional graphic. As you can see, the 12-Day vitamin D3 loading schedule at 50,000 IU/day for 12 days elevates serum 25(OH)D far more rapidly than just taking a maintenance dose of 10,000 IU/day which can take a month or more to elevate your 25(OH)D to a therapeutic level capable of preventing your CH. Taking the 12-Day accelerated loading schedule means you elevate your serum 25(OH)D to a therapeutic level faster for the expected reduction in CH frequency or complete cessation of CH symptoms. You may need to lower the vitamin D3 maintenance dose following the 30 day labs by adding an additional day or more between doses from one 50,000 IU capsule a week to one capsule every 8, 9 or 10 days. The key is frequent lab tests until you reach a stable dose and 25(OH)D response as you'll see in the following charts of my labs for 25(OH)D, calcium and PTH over the last 3 years. My PCP has no problems with my 25(OH)D3 concentrations this high as long as my serum calcium remains within its normal reference range. As you can see, it has. It's normal for PTH to be at the low end of its normal reference range when serum 25(OH)D is above 100 ng/mL. What you need to avoid is taking the PTH to zero by pushing your 25(OH)D too high like > 190 ng/mL. Like anything else, if the parathyroid glands sense there's no need to produce the PTH, they will eventually stop expressing this hormone and that would not be good. Regarding the efficacy of this regimen in preventing the other TACs, I don't have any concrete data. That said, as these TACs share much of the same pathogenesis with Calcitonin Gene-Related Peptide (CGRP) and Substance P (SP) playing major roles in neurogenic inflammation and nociception (pain) common to All TACs including CH, it's not unreasonable to expect vitamin D3 and its cofactors will help lower the frequency, severity and duration of the other TACs like it does for CH by down-regulating the expression of these two neuroactive peptides. There's really no harm in trying. Regarding the anti-inflammatory regimen acting as a CH abortive, it's really a matter of response times. We expect abortives like subcutaneous sumatriptan succinate to abort a CH in a matter of 5 to 10 minutes and nasal spray of same in 10 to 20 minutes. A single oral dose of 50,000 IU of vitamin D3 can produce a marked reduction in CH frequency in as little as 12 hours so it's more a preventative than abortive. That said, several of us are working on an inhaled formulation of micellized (water soluble) vitamin D3 nano mist or nasal spray as a potential abortive. It's too soon to tell, but I suspect this method of administration will be faster acting in terms of reducing CH frequency and possibly aborting CH. I hope this covers your questions. Please keep us posted as you start this regimen. Take care, V/R, Batch
  5. Hey Darren, Zookah gave you the best advice. Your healthcare system in Canada does not cover routine 25(OH)D lab test unless there's a potential medical emergency. You can try telling your PCP/GP or neurologist you're taking 50,000 IU/day vitamin D3 and want to make sure it's not causing hypercalcemia, a.k.a., vitamin D3 intoxication/toxicity. If your PCP/GP is on the ball, he'll order a lab test of your serum calcium as well. If that doesn't work, you can order a DIY 25(OH)D home blood spot test kit from GrassrootsHealth at the following link. They will ask you to join their D*Action program and register (it's free). The D*Action program tracks people taking vitamin D3 with a questionnaire and 25(OH)D lab tests. The charge for the home 25(OH)D lab test is $65 USD. I've used it many times and keep a D*Action test kit on my desk at all times. https://grassrootshealth.net/project/order-home-test-kit/ The assay method used for this DIY home test for 25(OH)D is called LC-MS/MS (liquid chromatography dual mass spectroscopy). This is the only assay method I suggest as it's capable of measuring total 25(OH)D serum concentrations up to 512 ng/mL, where the DiaSorin assay method, chemiluminescent immunoassay (CLIA) is only good up to 117.4 ng/mL. This is important as many CHers need to elevate their serum 25(OH)D above 120 ng/mL to experience a CH pain free response to this regimen. Regarding the safety of the anti-inflammatory regimen including the 12-Day accelerated vitamin D3 loading schedule... It's very safe. I've been providing information outreach on the this regimen since December of 2010. I estimate over 2000 CHers have started this regimen since then and I've yet to see a CHer report hypercalcemia as a result of following this CH preventative treatment protocol. The anti-inflammatory regimen is so safe I also have the rest of my family including three grand kids on this regimen and none of them have CH. The kids get a vitamin D3 dose of 50 IU per pound of body weight per day. For reference, I've had to take average doses of vitamin D3 up to 40,000 IU/day due to allergic reactions to pollen and mold spores in order to remain CH pain free. This has driven my 25(OH)D well above the 100 ng/mL upper limit of the normal reference range for this lab test as you'll see in the following chart of my lab results for 25(OH)D, calcium and PTH over the last 3 years. My PCP is OK with my 25(OH)D serum concentration this high as long as my serum calcium remains within its normal reference range... and as you can see, it has. I'm 75, in good health, and I don't take any Rx medications. It appears you've read enough about this treatment protocol to know that you'll need a second set of labs for your serum 25(OH)D, calcium and PTH when you've been on this regimen for at least 30 days. This is one of the reasons it's very helpful to have your PCP/GP or neurologist working with you in a team effort as you start this regimen. Accordingly, it may be helpful if you download a copy of the treatment protocol at the following link and take it to your PCP/GP or neurologist when you ask for the 25(OH)D lab test. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 It's interesting to note that readers of my web page at VitaminDWiki.com have downloaded over 34,000 copies of the above treatment protocol since I put it up online in January of 2017. When you have the results from this second set of labs in hand, please try to take the online survey of CHers taking this regimen. I'm using the results as part of a study to help neurologists and headache specialists become aware of the benefits of this treatment protocol so more CHers can experience the wonderful sensation of CH pain free life. To start this survey, click on the following link: http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c5ce971022f6 Thanks, take care and please keep us posted. V/R, Batch
  6. Hey Jost, Thanks for the feedback and sorry you're having a rough time. I'll be updating my web page at VitaminDWiki as soon as I get some feedback on the protocol update from a few vitamin D3 experts and neurologists who treat CHers and migraineurs with vitamin D3. I've been to Phoenix in the August time frame, so don't envy your situation with the temperature. Infections and allergies consume serum 25(OH)D rapidly, frequently leaving too little remaining to prevent CH or migraines. The best course of action reported by many CHers when they encounter infections is to load vitamin D3 for 3 to 4 days and increase their vitamin C intake to at least 6 grams/day. Allergies require a week to 10-day course of a first-generation antihistamine like Benadryl (Diphenhydramine HCL) taken at 25 mg every four hours throughout the day. (Loading vitamin D3 = taking a loading dose of 50,000 IU/day vitamin D3 for a few days to elevate serum 25(OH)D3 rapidly to a therapeutic serum concentration). The following notional graphic illustrates the advantage of a 12-Day accelerated vitamin D3 loading schedule over just taking a maintenance dose of vitamin D3. By "loading" you get to a therapeutic 25(OH)D3 serum concentration in 12 days where taking only a maintenance dose of 10,000 IU/day vitamin D3 could take upwards of one to two months to start experiencing a favorable response to this regimen with respect to CH or a viral infection. Unlike bacterial infections that require an appropriate antibiotic, there are no silver bullets for viral infections. Accordingly, in the case of a viral infection (colds and flu) bumping the vitamin D3 and vitamin C doses is the best and safest course of action. Taking these vitamins helps your body's immune system resolve a viral infection faster and more effectively. Taking an antibiotic for a viral infection is not only ineffective, antibiotics by their very nature are indiscriminate, so also kill off the friendly colonies of bacteria living in the GI tract called the microbiome. As most of our immune systems reside in the GI tract, keeping the microbiome "happy" is prudent. If your doctor has prescribed an antibiotic, be sure to start a course of probiotic as soon as you've completed the antibiotic. Regarding migraine headache... The basic anti-inflammatory regimen supplements as illustrated in the following photo by brand and maintenance dose help many migraineurs starting this regimen prevent their migraine headaches. Most of us taking the Bio-Tech D3-50 water soluble (micellized) 50,000 IU vitamin D3 capsules have found one (1) D3-50 capsule a week is an effective maintenance dose. It's always a good idea to see your PCP/GP or neurologist for lab tests of your serum 25(OH)D, calcium and PTH. Without knowing your 25(OH)D serum concentration, you're shooting in the dark at an appropriate vitamin D3 loading dose or where you are with respect to target 25(OH)D serum concentrations. For example, data from the online survey for CHers and other sources for migraineurs indicate the following mean 25(OH)D serum concentrations resulting in a significant reduction in headache frequency or complete cessation of headache symptoms. For practical purposes, the following 25(OH)D3 concentrations become the initial targets when starting this treatment protocol. Mean 25(OH)D Serum Concentration among Episodic CHers - 80 ng/mL Mean 25(OH)D Serum Concentration among Chronic CHers - 90 ng/mL Mean 25(OH)D Serum Concentration among Migraineurs - 120 ng/mL The following normal distribution of 25(OH)D3 lab test results from the online survey harvest in July of 2018 tells an important story CHers and Migraineurs need to understand. The green normal distribution curve illustrates the mean 25(OH)D3 serum concentration response of 80 ng/mL to an average vitamin D3 dose of 10,000 IU/day. What this also indicates is half of the CHers (Episodic and Chronic) responding to this regimen needed a higher 25(OH)D3 concentration for a favorable response. The blue S-shaped sigmoid curve illustrates the cumulative probability. As it's clear from the 25(OH)D responses, up to half of CHers starting this regimen, took a higher maintenance dose of vitamin D3 than 10,000 IU/day to experience a favorable response. That makes the blue sigmoid curve a reasonable dose response curve. In simple terms, a higher vitamin D3 dose results in a higher 25(OH)D3 serum concentration needed for a favorable CH response. For reference and regarding safety of vitamin D3 doses > 10,000 IU/day and high 25(OH)D serum concentrations > 100 ng/mL (250 nmol/L), I've maintained my serum 25(OH)D between 130 ng/mL and 188 ng/mL over the last three years due to allergic reactions to pollen and mold spores with no problems. My PCP is ok with my 25(OH)D serum concnetrations this high as long as my serum calcium remains within its normal reference range. As you'll see in the following chart of my lab results... it has. Besides a higher 25(OH)D serum concentration between 120 ng/mL and 150 ng/mL, most migraineurs will need some or all of the following supplements for a pain free response. o 300 to 900 mg/day CoQ10 (300 mg 3 times a day). CoQ10 is a must for CHers and migraineurs if taking statins o 3 to 6 grams/day liposomal vitamin C (1000 to 2000 mg with breakfast, lunch and dinner) o 1000 to 2000 mg/day Turmeric (Curcumin). o Probiotic with a high colony forming count containing a variety of Lactobacillus acidophilus, Lactobacillus plantarum, Bifidobacterium bifidum, and Streptococcus thermophilus. o 300 to 600 mg/day Alpha-Lipoic Acid (ALA) o 500 mg/day Resveratrol o 500 mg/day Quercetin o 3 to 6 grams/day L-Lysine I take the first three of these supplements daily for good health and to keep my 75 year-old heart ticking. Regarding oxygen therapy. Too many neurologists and most PCP/GPs have never treated a patient with CH so are unfamiliar with the Standards of Care recommended interventions (abortives and preventatives) for CH that list oxygen therapy as the first abortive of choice at 15 liters/minute. The rest have been brainwashed by the Big Pharmas that oxygen therapy is ineffective for cluster and migraine headache and that the very expensive patented pharmaceuticals (read sumatriptan succinate [Imitrex] and its derivatives) are very effective. What you need to do is print out the EFNS guidelines on the treatment of cluster headache and other trigeminal-autonomic cephalalgias by the God Squad of neurologists, expert in treating patients with CH and who are also members of the ICHD 3 working groups for CH and other TACs. They include: A. May, M. Linde, P. Sandor, S. Evers and P. Goadsby. You can download a copy at the following link and take it to your neurologist when you ask for an Rx for oxygen therapy as an abortive for your CH. https://onlinelibrary.wiley.com/doi/full/10.1111/j.1468-1331.2006.01566.x You can also download and print out the following link for: Treatment of Cluster Headache: The American Headache Society Evidence-Based Guidelines. https://www.ncbi.nlm.nih.gov/pubmed/27432623 Results and Recommendations: For acute treatment, sumatriptan subcutaneous, zolmitriptan nasal spray and high flow oxygen remain the treatments with a Level A recommendations. I hope this slayed all the dragons making it difficult for you to control your CH and MH... Take care and please keep us posted. V/R, Batch
  7. Hey RSG, CH Father gave you the right link for the anti-inflammatory regimen treatment protocol at http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 I've made a couple changes since I posted that 2017 version. In July of 2018, I switched brands and type of vitamin D3 from the Nature's Bounty oil-based 5000 IU liquid softgels to the Bio-Tech D3-50 50,000 IU water soluble (micellized) vitamin D3. I've found the Bio-Tech D3-50 to be faster acting and more potent in elevating serum 25(OH)D than the oil-based formulations. Data from the online survey of CHers taking this regimen now supports a longer accelerated vitamin D3 loading schedule from 12-Days at 50,000 IU/day vitamin D3 to 14-Days at 50,000 IU/day. This change increases the total loading dose of vitamin D3 from 600,000 IU to 700,000 IU spread over 14 days at 50,000 IU/day for episodic CHers and 16 days for chronic CHers. This also results in a new initial target serum concentration from 80 ng/mL to 90 ng/mL for episodic CHers and from 80 ng/mL to 100 ng/mL for chronic CHers. The initial vitamin D3 maintenance dose of vitamin D3 is now 15,000 IU/day. These loading schedules and maintenance doses apply to the oil-based liquid softgel vitamin D3 formulations, If you follow my lead and that of several other CHers who switched to the Bio-Tech D3-50 50,000 IU vitamin D3 capsules as I have, the loading and maintenance doses will be different as follows. If you're an episodic CHer start this regimen with the 12-Day loading schedule at 50,000 IU/day (one of the Bio-Tech D3-50 capsules a day for 12 days) then fall back to a new initial maintenance dose with the Bio-Tech D3-50 of one (1) capsule a week. If you're a chronic CHer, start this regimen with a 14-Day accelerated vitamin D3 loading schedule (one of the Bio-Tech D3-50 capsules a day for 14 days) then fall back to a new initial maintenance dose with the Bio-Tech D3-50 of one (1) capsule a week. If you do the math, 50,000 IU divided by 7 days comes to roughly 7,000 IU/day as the maintenance dose with the Bio-Tech D3-50. Due to the increased potency of the Bio-Tech D3-50 compared to the oil-based liquid softgel vitamin D3 formulations at the same dose, this equates to an equivalent of 15,000 IU/day of the liquid softgel vitamin D3 formulations. With either type of vitamin D3, if you haven't experienced a favorable response or complete cessation of CH symptoms by the end of the loading cycle, increase the loading period by two days at 50,000 IU/day for two days then drop back to the maintenance dose. If there's still no response, within three days of the additional loading doses, you may be experiencing an allergic reaction to airborne of food borne allergens. These allergic reactions can be subclinical with no outward or obvious symptoms. In this case, start a week to 10-day course of a first-generation antihistamine like Benadryl (Diphenhydramine HCL) at 25 mg every four hours throughout the day. Just be careful and not drive as this much Diphenhydramine will make you drowsy. If you need to drive during the day, wait until you're home for the day then take 50 mg of Benadryl as you walk through the door, and another 50 mg at bedtime. If there's no response to the Benadryl after five days, discontinue as an allergy is not the likely culprit preventing a favorable response to this regimen. It's important to take all of the vitamin D3 cofactors and conutrients illustrated in the following photo. In particular, it's best to double the magnesium dose from 400 mg/day to 800 mg/day while loading vitamin D3. Take 400 mg of magnesium in the morning with breakfast and the other 400 mg in the evening with dinner. Doing this will help avoid osmotic diarrhea. The Kirkland brand Adult 50+ Mature Multi is also very important as it's formulated with most of the vitamin D3 cofactors. It just doesn't have enough magnesium or any vitamin K2 complex (MK4 and MK7). At 22 cents per capsule taken at a maintenance dose of one (1) capsule a week, the Bio-Tech D3-50 is also the least expensive form of vitamin D3 at 3 cents/day. The Nature's Bounty has a price of 6 cents per 5000 IU vitamin D3 liquid softgel or 12 cents/day for the 10,000 IU maintenance dose. It is very important to see your PCP/GP or neurologist for lab tests of your serum 25(OH)D, calcium and PTH 30 days after start of regimen. As long as you're CH pain free or have experienced a significant reduction in the frequency of your CH and your serum calcium concentration is within its normal reference range, your actual 25(OH)D serum concentration doesn't really matter. Hope all this makes sense. I'll be publishing a revised version of this treatment protocol on VitaminDWiki as soon as a few key vitamin D3 experts and physicians have had an opportunity to comment on the new protocol. Take care and please keep us posted. V/R, Batch
  8. I'm booked... See you there. This should be a hoot! V/R, Batch
  9. Hey DM, If the CH beast is still jumping ugly, I'd take a 50,000 IU loading dose for 4 to 5 days then drop back to a new maintenance dose of 15,000 IU/day. If there's no joy after a couple days at a maintenance dose of 15,000 IU/day, take two more days loading dose of 50,000 IU/day then drop back to 15,000 IU/day as the maintenance dose. Slow and sure is fine for a train going up grade, but not for taking vitamin D3 to prevent CH. Cut to the chase and elevate your serum 25(OH)D as fast as possible to get the CH pain free response. Glad to see you're taking the Kirkland brand Adult 50+ Mature Multi. Among its vitamin D3 cofactors is boron. Boron plays a very special role in this regimen by down-regulating 24-Hydroxylase, the enzyme that hydroxylates vitamin D3 to 1,24,25(OH)3D3. This is a genetically inactive vitamin D3 metabolite the body breaks down and eliminates in urine so down-regulating this enzyme prevents the needless loss of serum 25(OH)D. Take care and please keep us posted. V/R, Batch
  10. Freud, Providing information outreach on RA is a little out of my comfort zone... That said, as it falls in the autoimmune category, RA should respond to vitamin D3 therapy. The only question is how high to take the vitamin D3 dose/25(OH)D response, how much the cofactors need to be increased and any additional conutrients specific to RA that may be needed. The anti-inflammatory regimen is a good place to start, but the target 25(OH)D may be well North of 120 ng/mL, like 180 ng/mL for RA. I say this as I've been there at 188 ng/mL and it depressed my PTH as expected which is good. The only issue is being careful not to depress PTH to zero as we need the parathyroids to continue functioning and not shutdown. The reason for this is simple, we need PTH to maintain calcium homeostasis that maintains serum calcium within its normal reference range. In this case, I pushed my PTH down to 10 pg/mL when the normal reference range is 14 to 64 pg/mL as you'll see in my lab results. This is no different than taking prednisone at too high a dose for too long. The adrenal glands produce the steroids aldosterone and cortisol that are essential for normal healthy physiology. If we take too much prednisone for too long, the adrenals say WTF. Why should I make aldosterone and cortisol when there's so much prednisone floating around... so they shut down. That poses a big problem when you stop taking prednisone and the reason why it is absolutely essential to taper off steroids gradually or only take steroids in short burst doses or week to 10-day tapers. I'm a pragmatist when it comes to preventing CH with vitamin D3 therapy... The expected result of taking the anti-inflammatory regimen is a CH pain free response. Accordingly, I take as much vitamin D3 as needed to stop my CH. This allows me to maintain a very good quality of life, in excellent health, free of terrible CH pain. My lab results for 25(OH)D, calcium and PTH in the following chart are a good example. On the 1st of March, 2018, I increased my vitamin D3 dose to 40,000 IU/day in anticipation of a heavy Alder tree pollen fall in April. On 20 March I had my labs done and my 25(OH)D was 188 ng/mL. As I was CH pain free I dropped the dose to 25,000 IU/day. As you can see, my serum calcium was still within its normal reference range and PTH was low. In early June, I suffered a major insult from mold spores that triggered an onerous allergic reaction (allergic rhinitis) with a flood of histamine. Histamine can make nearly every CH intervention ineffective... so the CH beast jumped ugly. An electrician had ripped out wall board to replace a 50-year-old fuse box in the house in Pelican, AK were we stay while salmon fishing each summer. Unbeknownst to me, there was a half-inch layer of mold in the wall space from years of roof leaks. Within 24 hours of the electrician's work, the stirred up mold spores had the CH beast jumping ugly at night for the first time in many years. Two days of vitamin D3 at 50,000 IU/day and 25 mg of Benadryl (Diphenhydramine HCL) every four hours had no effect. Fortunately, I had welder's oxygen available and I made a couple of my Redneck oxygen reservoir bags out of clean kitchen trash bags, so the CH hits were more of an annoyance that anything else. However, as we were getting up around 04:30 each morning to get an early start fishing, the lack of sleep had me on edge. Rather than trying to sneak up on a therapeutic response taking loading doses of 50,000 IU/day, I took 100,000 IU/day for two days. The night after the second dose of 100,000 IU/day vitamin D3, I slept CH pain free so I dropped the vitamin D3 dose back to 40,000 IU/day for the rest of my two-week stay in Pelican. I estimate my serum 25(OH)D concentration was around 175 ng/mL in June when the CH beast jumped ugly due to the allergic reaction to the mold spores. That should give you an idea how bad an allergic reaction can be to a CHer. On 1 July 2018, I switched to the Bio-Tech D3-50 50,000 IU water soluble (micellized) form of vitamin D3 taking one of the Bio-Tech D3-50 capsules every 5 days (120 hours) for an average daily dose of 10,000 IU/day. When I had my next set of labs on 12 October 2018, I expected my 25(OH)D serum concentration would have dropped from 188 ng/mL to at least 170 ng/mL. When it came back at 181 ng/mL, I was a bit surprised. As I was blissfully CH pain free, I decided it was time for one of by 25(OH)D burn down tests so stopped taking any supplemental vitamin D3, but I continued taking all the cofactors and conutrients. My 25(OH)D serum concentration was 136 ng/mL at my next set of labs on 14 January 2019, 95 days later, for a monthly 25(OH)D burn rate of 14.2 ng/mL.. As I was still CH pain free, I decided to try taking one Bio-Tech D3-50 water soluble capsules a week for an average daily vitamin D3 intake of 7,142 ng/day. At my next set of labs a little over 3 months later on 26 April 2019, the results came back at 152 ng/mL, so it was very clear the Bio-Tech D3-50 was more potent in terms of elevating/maintaining 25(OH)D serum concentration at the same dose as the oil-based liquid softgel vitamin D3 formulations. I'll cover a lot more about this regimen at the Patient Conference in Dallas. Looking forward to seeing all of you there. V/R, Batch
  11. Brian, Meeting other CHers for the first time at a CHer gathering like this is a very special thing... Just knowing you're not alone with this disorder is reason enough to attend. The really interesting thing is you'll meet a CHer you've never met at an event like this and in a few minutes talking with them, it will seem like you've known them for many years. I'll be there with the latest data from the online survey. Take care, V/R, Batch
  12. Hey DM, How much vitamin D3 have you been taking as a maintenance dose? As you'll see in the following graphic a 25(OH)D response of 70 to 74.6 ng/mL is within the average response range for a vitamin D3 maintenance dose of 10,000 IU/day. The 25(OH)D response to dose of 10,000 IU/day vitamin D3 is illustrated in the following graphic of 25(OH)D lab results from the online survey of 257 CHers taking this regimen. It's displayed as normal distribution. If you're still getting hit by CH at this dose, follow the treatment protocol as it says to titrate (incrementally increase) the vitamin D3 dose until you reach a CH pain free status. Rationale: 10,000 IU/day vitamin D3 is sufficient for 80% of CHes in preventing their CH. The other 20% need a higher vitamin D3 dose or they've an infection or allergy cooking away. Infections and allergies consume available vitamin D3 rapidly. This could be the culprit keeping this regimen from preventing your CH. As suggested, taking Benadryl (Diphenhydramine), an antihistamine, can help in some cases if an allergy is the problem. Getting back to the need for a higher serum 25(OH)D concentration and titration... The fastest way to titrate the vitamin D3 dose is with two to four days at a loading dose of 50,000 IU/day then fall back to a maintenance dose of 15,000 IU/day. If there's no joy after two to three days at the new maintenance dose, repeat the loading dose for two more days then drop back to a maintenance dose of 20,000 IU/day. Feedback from several CHers who started taking the Bio-Tech D3-50 50,000 IU water soluble (micellized) form of vitamin D3 indicate this form of vitamin D3 is faster acting and more effective in preventing CH than the oil-based liquid softgel vitamin D3 formulations... Bottom line, it may help you arrive at a CH pain free status by switching to the Bio-Tech D3-50. I've been taking it since July of last year at a dose of one (1) Bio-Tech D3-50 capsule a week. This has maintained my 25(OH)D up around 150 ng/mL. The response rate to this regimen reported by CHers taking the online survey during the first 6 months of 2019 has been impressive. 90% of CHers starting this regimen are experiencing a significant reduction in the frequency of their CH in the first 30 days. If this increase in efficacy from 80% to 90% continues, I'm of the opinion it's the Bio-Tech D3-50 that's responsible. Take care and please keep us posted. V/R, Batch
  13. xxx

    Vitamine D3

    Hey CS, Interesting handle... Thanks for the headzup you've started the anti-inflammatory regimen CH preventative treatment protocol and good question. The answer is yes. You still need the 12-Day accelerated vitamin D3 loading schedule taking 50,000 IU/day vitamin D3 for 12 days. You'll need to drop back to an an initial vitamin D3 maintenance dose of 10,000 IU/day when you complete the loading schedule. It's also best to double the magnesium dose to 800 mg/day during the loading schedule. Split the dose by taking 400 mg of magnesium with breakfast and the other 400 mg with the evening meal. Doing this will help prevent osmotic diarrhea. Getting lots of mid-day sun can help prevent CH, but that can take several weeks to accumulate sufficient serum 25(OH)D. The 12-Day accelerated vitamin D3 loading schedule gets you there in 12 days. Most CHers who follow this treatment protocol experience a favorable response within the first two weeks of this regimen as indicated in the following graphic of time to respond after start of regimen. This chart comes from the online survey of CHers taking this regimen. When you've been on this regimen for at least 30 days, see your PCP/GP for lab tests of your serum 25(OH)D, calcium and PTH. When you have the results in hand, please take the online survey. To start this survey, click on the following link: http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c5ce971022f6 If there is any inflammation from any source or an allergic reaction cooking away, it won't matter how much sun you get or skin type you have. Inflammation and allergic reactions consume 25(OH)D faster than you can build it with cutaneous vitamin D3 from sunlight. What's even worse is the CH pain free threshold 25(OH)D serum concentration actually increases to a higher therapeutic level making it impossible to get enough 25(OH)D from sunlight. If followed, this treatment protocol will build a sufficient 25(OH)D reserve to help remain CH pain free during infections, allergic reactions, trauma and surgery. Take care and please keep us posted. V/R, Batch
  14. xxx

    Vitamine D3

    Hey Cocobongo, Good questions. I would start taking the Kirkland Adult 50+ Mature Multi and skip taking the calcium citrate. The Mature Multi is formulated with most of the essential vitamin D3 cofactors, it just doesn't have enough magnesium or any vitamin K2 complex. The normal daily maintenance dose of magnesium is 400 mg/day. If you're starting this regimen with the 12-Day accelerated vitamin D3 loading schedule taking 50,000 IU/day vitamin D3 for 12 days, you'll need to double the magnesium dose to 800 mg/day. It's best to split this dose taking 400 mg with breakfast and 400 mg with the evening meal. This will help avoid osmotic diarrhea. The anti-inflammatory regimen CH preventative treatment protocol works very well with the Psilocybin protocol. In fact, it appears they have a synergistic effect when taken together as most CHers starting both of these interventions appear to respond faster with a significant decrease in the frequency of their CH. Take care and please keep us posted. V/R, Batch
  15. xxx

    Vitamine D3

    Hey Cocobongo, The photos below illustrate the brands and doses of the anti-inflammatory regimen vitamin D3 cofactors I've taken for nearly 8 years. I'm a chronic CHer and this regimen has kept me CH pain free since I started it in October of 2010. I estimate over 2000 CHers are now taking this regimen. I switched from the Calcium - Magnesium formulation to the Costco Kirkand brand Adult 50+ Mature Multi in 2011. This mature multi is important as it contains nearly all the essential vitamin D3 cofactors. It just doesn't have enough magnesium or any vitamin K2 complex. Readers of my web page at the VitaminDWik link http://is.gd/clustervitd have downloaded 26,445 copies of the anti-inflammatory regimen treatment protocol titled CH Preventative Treatment Protocol for Neurologists - Jan 2017.pdf since I put it up online 21 Jan, 2017. In June of 2018, I switched brands and type of vitamin D3 from Nature's Bounty 5,000 IU liquid soft gels to the Bio-Tech D3-50. This is a 50,000 IU water soluble (micellized) form of vitamin D3. I've found it faster acting and more potent at the same dose than the oil-based liquid soft gel formulations. It's also less expensive. Two of the Natures Bounty 5,000 IU liquid soft gels cost 12 cents/day. If you take one of the 22 cent D3-50 capsules every 5 days (120 hours), the average cost per day is a little over 4 cents/day. As this form of vitamin D3 is more potent, most CHers will be able to take one of these 50,000 IU vitamin D3 capsules a week for an average cost a little over 3 cents/day. CHers tend to respond faster to this regimen if they start it with the 12-Day accelerated vitamin D3 loading schedule. As you can see, the 12-Day accelerated vitamin D3 loading schedule elevates serum 25(OH)D up to a therapeutic range of 60 to 100 ng/mL (80 ng/mL is the initial target serum concentration), in roughly 12 days. It can take a month to two months to elevate serum 25(OH)D into the therapeutic range taking 10,000 IU/day vitamin D3. The rationale for the 12-Day accelerated vitamin D3 loading schedule is simple... The faster you elevate your serum 25(OH)D to a therapeutic level, the sooner you'll experience a CH pain free response. It's best to take all the supplements in this regimen with the largest meal of the day. This helps absorption and also helps avoid any GI tract problems. The exception to this rule is while loading vitamin D3 during the 12-Day accelerated vitamin D3 loading schedule where you take one (1) of these 50,000 IU vitamin D3 capsules a day for 12 days then drop back to a maintenance dose of 10,000 IU/day (one capsule every 5 days/120 hours). During the loading schedule, it's best to take 800 mg/day magnesium split 400 mg with breakfast and 400 mg with the largest meal of the day. Splitting the magnesium dose like this helps avoid osmotic diarrhea. Doubling or tripling the Omega-3 fish oil to 2000 to 3000 mg/day while loading is also a good idea. If you haven't responded to the loading dose with a reduction in the frequency of your CH by the end of the first week, starting a week to 10 day course of Benadryl (Diphenhydramine HCL) may help. Take one 25 mg tablet every 4 hours during the day and at bed time. Just be careful and not drive if possible as this much Diphenhydramine will make you drowsy. If you need to drive during the day wait until you're home for the day then take 50 mg as you walk through the door and another 50 mg at bedtime. If you've still not responded by the 12th day of the accelerated vitamin D3 loading schedule, continue taking the 50,000 IU loading dose for another 4 to 6 days then drop back to the initial maintenance dose of 10,000 IU/day vitamin D3. 30 days after start of regimen, see your PCP/GP for lab tests of your serum 25(OH)D, calcium and PTH. As long as you're CH pain free, your serum calcium is within its normal reference range and your PTH is in the lower third of its reference range, your actual 25(OH)D serum concentration doesn't really matter even if its over 100 ng/mL. For reference, over the last three years I've needed to take between 25,000 and 40,000 IU/day vitamin D3 in order to stay CH pain free due to pollen and mold spore counts. This resulted in my serum 25(OH)D ranging between 150 and 188 ng/mL. My PCP has no problem with vitamin D3 doses and serum 25(OH)D this high as long as my serum calcium remains within its normal reference range... and it has. The reason I went into details on cost is simple. CHers are far better off taking this regimen daily year round, even if they're episodic. That means keeping the daily cost to a minimum is important. As shown in the above photos, the cost of this regimen is roughly 43 cents/day or $157/year. That's less than the cost of two subcutaneous injections of Imitrex (Sumatriptan Succinate). The health benefits over and above preventing CH are huge and hard to ignore. Once you've gotten your CH under control with this regimen, you'll want to get the rest of your family taking it or you'll outlive all of them. For reference, the anti-inflammatory regimen is so safe and healthy for us, I've had my close friends and entire family including 8 grand kids taking this regimen since 2012. None of them have CH or MH. The three youngest grand kids were bathed in maternal vitamin D3 at 10,000 IU/day from conception through breastfeeding. These kids have T-Rex immune systems (they don't get sick) with phenomenal physical, neuromotor and cognitive development. They're young Einstein wunderkinds and all three were speaking a second language at age 2. Diet is a very important part of this regimen as certain food types cause inflammation and this can slow or even prevent a favorable response to this regimen. I suggest an Atkins-Ketogenic diet as there are a number of studies indicating this type of diet helps prevent both cluster and migraine headache. Start this diet with at least a 24 to 36 hour fast drinking only water and taking the regimen supplements. Fasting like this burns up blood starch (glycogen) stored in the liver. This will help shift your body over to a fat burning metabolism that results in the formation of ketones, hence the name "ketogenic." For reference, the human brain runs more effectively consuming ketones than glucose. After the fast, it's a very low carbohydrate diet with zero sugars (no fruit juices either) zero wheat products (gluten) and no dairy products. Wheat products include no bread, pasta, cookies, cakes, crackers or pizza. No grain or vegetable oils like Canola or Corn oil. The best and healthiest fats are organic butter, extra virgin olive oil, avocado oil and my favorite, extra virgin coconut oil. You'll need to avoid carbohydrates and dairy products completely for the first 30 days so no high starch food types like potatoes, sweet potatoes, yams or bananas. You can eat all the free range organic meats, poultry and eggs you want. A serving or two of wild caught fish (Ahi Tuna, Coho or Sockeye salmon) a week is great. You can also eat all the organic Non GMO green and colored veggies you want. Limit fruits for the first month to a handful of dark berries a day like blackberries, blueberries or raspberries. Be sure to drink at least 2.5 liters of water a day. I keep a 2.75 liter bottle of water in the frig and refill every evening prior to bed time. Taking a probiotic can also help push you into a CH pain free response. Take the contents of the probiotic as directed on the label until the bottle is empty. The rationale for this is simple... We have friendly colonies of bacteria and biota in our GI tracts call the microbiome. Taking a probiotic will help ensure we have the right mix of friendly bacteria in our GI tracts. As the microbiome represents a major part of our immune system, taking a probiotic makes for a happy gut and a happy gut is a healthy gut. When you've been on this regimen for at least 30 days, see your PCP/GP for lab tests of your serum 25(OH)D, calcium and PTH (parathyroid hormone). Once you have the lab results in hand, please find the time to take the survey of CHers taking this regimen. 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 me posted. I think you'll find this regimen very effective in preventing your CH. If you have any further questions or problems, please let me know. I'm here to help. V/R, Batch
  16. xxx

    Hip Surgery

    Start, taking 10,000 IU/day vitamin D3 now. Surgery like yours will deplete vitamin D3 rapidly. Take care, V/R,Batch
  17. Hey Dana, Infections of any kind can affect the frequency of CH. Gingivitis can also occur even when people have a good dental practice brushing daily. The problem is usually diet. Sugars and starches metabolize in the mouth to feed bacteria responsible for gingivitis. Avoiding sweets, brushing after meals, and high doses of vitamin C at 4 to 6 grams/day can do wonders. Take care, V/R, Batch
  18. xxx

    oxygen

    He Greg, See your PCP/GP for a lab test of your serum 25(OH)D concentration. It's a safe bet your 25(OH)D serum concentration is < 40 ng/mL. Once they've completed the blood draw for this lab test, start the anti-inflammatory regimen treatment protocol and the pending CH cycle will be a non-event. See the following VitaminDWiki link to download a copy of the treatment protocol. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Take care and please keep us posted. This O2 saga has legs. V/R, Batch
  19. xxx

    oxygen

    Greg, Although the trajectory appears favorable in obtaining home oxygen therapy, the process in obtaining it is getting curiouser and curiouser. Was the Medicare rep you spoke with local or back at CMS HQ in Maryland? Take care, V/R, Batch
  20. xxx

    oxygen

    Hey Greg, Having studied this topic in detail with several experts since 2006, I'm well aware of your problem obtaining home oxygen therapy as an abortive for your CH. I suspect your Rx for oxygen therapy wasn't written properly. The Rx must clearly state oxygen at a flow rate of 15 to 25 liters/minute with a non-rebreathing mask for cluster headache. Otherwise, home oxygen providers are spring-loaded to assume the Rx is needed to treat COPD and ask for blood oxygen saturation test results, as you've already discovered. The Rx should also state Administer STAT for at least 15 minutes up to 12 times/day with Refills for six (6) months for episodic CH or refills for one (1) year for chronic CH. In addition, your doctor can also get very specific by using the appropriate Dianostic Treatment and Healthcare Common Procedure Coding System (HCPCS) codes: Diagnostic and Treatment Codes: ICD-9-CM Diagnosis Codes: Episodic Cluster Headaches – 339.01 Chronic Cluster Headaches – 339.02 ICHD-II Codes: Episodic Cluster Headaches – 3.1.1 Chronic Cluster Headaches – 3.1.2 ICD-10 NA Codes: Episodic Cluster Headaches – G44.01 Chronic Cluster Headaches – G44.02 Healthcare Common Procedure Coding System (HCPCS) Codes for Home Oxygen Therapy: Equipment: E0424-E0425 Stationary compressed gaseous oxygen system (M-Size cylinders at home) E0430-E0431 Portable gaseous oxygen system (E-Size cylinders when not at home) Contents: E0441 Oxygen contents, gaseous, 1 month’s supply = 1 unit Modifiers: QG - Prescribed amount of oxygen is greater than four liters per minute (LPM) Accordingly, for an episodic CHer needing home oxygen therapy as a CH abortive, the Rx should read: “Oxygen therapy at flow rate of 15 to 25 lpm with non-rebreathing mask as abortive for episodic cluster headache. Administer STAT for 15 minutes up to 12 X per day - ICDM-9 339.01/ICDH-II 3.1.2/ICD-10 G44.02/HCPCS - E0424-E0425, E0430-E0431, E0441 - 12, QG.” For a chronic CHer, the Rx should read: “Oxygen therapy at flow rate of 15 to 25 lpm with non-rebreathing mask as abortive for chronic cluster headache. Administer STAT for 15 minutes up to 12 X per day - ICDM-9 339.02/ICDH-II 3.1.1/ICD-10 G44.01/HCPCS - E0424-E0425, E0430-E0431, E0441 - 6, QG.” If the Rx is written this way, you beat the dirty rotten bastards at their own game using their own rules. Moreover, there's no way the home oxygen provider can confuse this Rx for COPD. Give your neurologist a copy of this post. If the home oxygen provider makes any changes to this Rx, be bold, remind them "it's against the law to change an Rx without consulting with the physician who wrote the Rx. Then ask for the name of the Physician who has attempted to change the Rx so you can report that physician to the State Medical Board legal department. Rationale, A strong offense is the best defense and telling them this usually puts them back on their heels. What's the name of your medical insurance provider and state? In many cases you can go over the Internet and look up the policy regarding "coverage" (they pay) for oxygen therapy. Most medical insurance companies do cover home oxygen therapy for cluster headache. That said, if you're on MEDICARE and do not have supplemental medical insurance that covers home oxygen therapy for cluster headache, don't waste your time, you'll need to take up Oxy-Acetylene welding and buy your own welder's O2 cylinder. (Just don't tell the welding supply people how you intend to use it.) Oxygen therapy for a CHer on MEDICARE is not covered because the unelected idiot weasel bureaucrats at the Centers for Medicare & Medicaid (CMS/OCQ) have made a most egregious non-coverage determination in 2010 (a no coverage rule so they don't have to pay for the oxygen) for home oxygen therapy for cluster headache sufferers on MEDICARE. This is another example of Big Government run amuck. They had a lot of help. If you follow the money, you'll find that Big Pharma does not want you to use oxygen therapy as a CH abortive and instead buy one or more of their patented pharmaceuticals costing upwards of $100 a pop, so they paid Lobbyists on K-street to write legislation for idiot members of Congress, who couldn't write a coherent sentence if they tried, that makes it more difficult for a physician to prescribe home oxygen therapy than write an Rx for opiates. Moreover, in order to get this legislation passed, Big Pharma pays its K-street lobbyists to make donations to the applicable Political Action Committee (PAC) for corrupt members of Congress so they will vote in favor of this terrible legislation. If you've any questions, just let me know. There are no rules in a knife fight... and I'm a cranky old Navy fighter pilot... who loves a fight like this. Take care and happy hunting. V/R, Batch
  21. xBoss, Changing geographic regions to prevent CH is much too drastic... It may work, but it's a lot easier and far less costly to take 10,000 IU/day vitamin D3 for an 80% probability of success in controlling your CH. If you take the Bio-Tech D3-50 50,000 IU water soluble "micelized" vitamin D3 at 21 cents/capsule and take one (1) every 5 days for an average dose of 10,000 IU/day, the average daily cost of your vitamin D3 is 4 cents/day or ~ $15/year . Some CHers get by with one of these Bio-Tech D3-50 capsules a week, an average vitamin D3 dose of 7,000 IU/day for 3 cents/day or $11/year. The rest of the anti-inflammatory regimen cofactors and conutrients run around 45 cents/day. The entire clutch comes in around 50 cents a day or $183/year... About the cost of taking your wife out for a movie, dinner and drinks. This regimen makes good sense or good cents no matter how you look at it. And then there are all the wonderful health benefits with no adverse side effects... That's a no brainer... Take care, V/R, Batch
  22. It's called air conditioning. Edited to Add: I had an interesting exchange with Dr. Cicero Coimbra, MD, PhD, on his high dose vitamin D3 protocol for his MS patients. The starting vitamin D3 dose is 1000 IU vitamin D3 per Kg body weight per day. At 80 Kg, I would be taking 80,000 IU/day vitamin D3 if I was on his treatment protocol. When I asked why so many people had MS in Sao Paulo, Brazil where the Latitude is -23.5º North, about the same distance South of the equator as Key West, FL is North of the equator, so they should be getting lots of cutaneous vitamin D3 from the sun, he replied "They all have the same problem." When I asked what problem was that? He replied, "Air conditioning."
  23. Hey Paul, When you see the doctors today, ask for the lab test of your serum 25(OH)D. 25 Hydroxy-Vitamin D is the first metabolite of vitamin D3 that's used to measure its status... It's axiomatic if you're having an active bout of CH... you're vitamin D3 deficient as illustrated in the following graphic from the online survey of 257 CHers. This chart illustrates the normal distribution of lab results for 25(OH)D before starting the vitamin D3 regimen. The normal reference range for this lab test is 30 to 100 ng/mL. Any value less than 30 is insufficient/deficient. 80% of CHers who start this regimen respond with an 80% reduction in the frequency of their CH when their 25(OH)D serum concentration reaches 80 ng/mL. 50% of CHers who start this regimen experience a complete cessation of CH symptoms in the first 30 days after starting this regimen. If they're hesitant or unwilling to give you this lab test, just tell them you've been taking vitamin D3 at 50,000 IU/day then watch their faces. Take care and please keep us posted V/R, Batch
  24. If you want some insights into the commonality of migraine and cluster headache, download and absorb the following link... It will make you an expert on the topic. Keep in mind this paper was written during the hype and mania over anti-CGRP monoclonal antibodies.... We know better now that these mAbs are neither silver bullets or all that effective, just an expensive way to expose yourself to some onerous adverse side effects. Take care, V/R, Batch https://www.researchgate.net/publication/327810063_Migraine_and_cluster_headache_-_the_common_link Abstract Although clinically distinguishable, migraine and cluster headache share prominent features such as unilateral pain, common pharmacological triggers such glyceryl trinitrate, histamine, calcitonin gene-related peptide (CGRP) and response to triptans and neuromodulation. Recent data also suggest efficacy of anti CGRP monoclonal antibodies in both migraine and cluster headache. While exact mechanisms behind both disorders remain to be fully understood, the trigeminovascular system represents one possible common pathophysiological pathway and network of both disorders. Here, we review past and current literature shedding light on similarities and differences in phenotype, heritability, pathophysiology, imaging findings and treatment options of migraine and cluster headache. A continued focus on their shared pathophysiological pathways may be important in paving future treatment avenues that could benefit both migraine and cluster headache patients. Take Care, V/R, Batch
  25. Hey CBWMHH, Most modern digital cameras have both low light and time lapse video functions. Set up a camera pointed at you with these functions enabled at bedtime. You might find something. Take care and please keep us posted. V/R, Batch
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