Jump to content

xxx

Advanced Members
  • Posts

    697
  • Joined

  • Last visited

  • Days Won

    88

Everything posted by xxx

  1. Hey CBWMHH, I checked the online survey database of 300 CHers... No comments about insomnia. In fact, most comments about sleep indicated it was better with vitamin D3. Dr. Stasha Gominak recommends a good vitamin B complex tablet daily to help with sleep. I've met her... She's the real thing. https://drgominak.com/ What are your sleep patterns? Do you take naps during the day? Do you feel rested when you get up? Take care, V/R, Batch
  2. Hey Mark, Any 25(OH)D serum concentration above 100 ng/mL will be assessed as "High". Please don't let that bother you. The technoids (not real vitamin D3 experts) who set the upper limit for the 25(OH)D normal reference range knew that 200 ng/mL was likely safe, but where a few people start experiencing hypercalcemia (too much serum calcium) so they wanted to be uber safe and conservative so set the upper limit at 100 ng/mL. If you're still getting hit with CH with your 25(OH)D at 120 ng/mL, you may need a higher vitamin D3 dose and a 25(OH)D serum concentration up around 140 ng/mL to achieve a favorable response. For reference, over the last three years I've kept my 25(OH)D serum concentration between 130 ng/mL and 188 ng/mL taking between 20,000 IU/day and 40,000 IU/day vitamin D3 to stay CH pain free depending on the pollen and mold spore count. My PCP has no problem with my 25(OH)D serum concentration this high as long as my serum calcium concentration remains within its normal reference range... and it has. Be sure to ask for serum calcium and PTH when you go back in for lab tests at the next VA facility. Take care and please keep us posted. V/R, Batch.
  3. JH, On a related note, they discovered I had an autoimmune eye disorder called uveitis when I had the detached retina. As a result of this diagnosis, I took part in a clinical trial of a monoclonal antibody called daclizumab at the National Eye Institute, NIH, Bethesda, MD. The informed consent document for this clinical trial of daclizumab was filled with a long list of frightening adverse side effects, but the thought of my retina rejecting me and going blind was a bigger fear so I signed the consent form. Long story made short, the daclizumab worked, but it destroyed my immune system in the process and I was plagued with all the listed adverse side effects until I started the anti-inflammatory regimen in October of 2010. I've passed annual ophthalmology eye exams ever since. It's clear to me and my ophthalmologist, the vitamin D3 has kept my eyes healthy and rebuilt my immune system. Take care and please keep us posted. V/R, Batch
  4. Hey JH, Floaters happen with age. They occur when the eyeball starts to elongate from a spherical shape to a grape shaped structure. This elongation causes the vitreous humor, the clear jello inside the eye, to put stress/tension on the retina causing microbleeds... the floaters you're seeing. Floaters happen to people without CH. See your PCP for an ophthalmology consult. You need a thorough eye exam... The incidence of spontaneous retinal detachment also goes up as we age... Been there, done it, had a detached retina and posterior vitrectomy to prove it. Take care, V/R, Batch
  5. Hey Clusterwife06 and Maddie3, Take a look at the link titled "D3 Regimen for CH' in the Theory and Implementation section. It has everything you'll need to take control of CH. You can also click on the following link, it will pull up this same post. Take care and please keep us posted. V/R, Batch https://clusterbusters.org/forums/topic/6194-d3-regimen-for-ch/
  6. Sorry to sound like a stuck record... (Hmmm I guess that phrase dates me...) but starting the anti-inflammatory regimen with the 12-Day accelerated vitamin D3 loading schedule at 50,000 IU/day vitamin D3 for 12 days followed a maintenance dose of 10,000 IU/day of vitamin D3 and the rest of this regimen has a high probability of ending your angst by preventing your CH. The following chart illustrates the favorable response rate by day after starting the anti-inflammatory regimen for 80% of CHers who start this regimen. This figure improves the longer CHers stay on this regimen. That said, I frequently forget that trying to convince some CHers running from pillar to post, in and out of the frying pan and fire trying to dodge the next CH, that this is a very safe and effective method of controlling CH is like trying to herd cats. Then I remember that logic has little meaning when the CH beast is jumping ugly every hour... Please forgive me. I'll be here if you need help. V/R, Batch
  7. xxx

    Any input

    Hey Voc Teacher. Howz the head? Vitamin D3 loading typically needs to be a minimum of 5 to 7 days at 50,000 IU/day when at higher 25(OH)D serum concentrations around 80 ng/mL to have a significant effect on CH frequency. Take care, V/R, Batch
  8. Hey J, Good question. CHers taking the anti-inflammatory regimen CH preventative treatment protocol with 10,000 IU/day vitamin D3 who were not responding by the end of the first week on this regimen have found allergic reactions were likely the cause of their non-response. A week to 10-day course of a first-generation antihistamine like Benadryl (Diphenhydramine HC) at 25 mg every four hours throughout the day has helped most of them. I don't have any data for CHers taking only the Benadryl (Diphenhydramine HCL). Take care, V/R, Batch
  9. xxx

    Any input

    Hey Voc Teacher, How much vitamin D3 are you taking and have you had a recent lab test of your serum 25(OH)D? The two main reasons CHers don't go CH pain free on the vitamin D3 regimen are the vitamin D3 maintenance dose (and resulting serum 25(OH)D) are too low. 4 to 6 days at a vitamin D3 loading dose of 50,000 IU/day and a new maintenance dose 5,000 IU/day higher usually solves that problem. The other reason involves allergic reactions. In this case, a week to 10 days of a first-generation anti-histamine like Benadryl (Diphenhydraming HCL) at 25 mg every 4 hours during the day and at bedtime usually does the trick to jump start the anti-inflammatory regimen or MM. Just be careful and not drive as this much Diphenhydramine will make you drowsy. If you need to drive during the day, wait until home for the day then take 50 mg as you walk through the door and another 50 mg at bedtime. Take care and please keep us posted. V/R, Batch
  10. Hey Freud, Fair comments about my post to JH. Too much bravado and not enough factual data... I've fixed that with an edit. Take a look and let me know if it passes muster. Regarding the online survey data, I've kept my reporting of that efficacy data as objective as humanly possible. I'll be happy to show you the survey database this coming September at the Clusterbuster Conference in Dallas, TX. Credibility is everything when talking about efficacy of a CH intervention like Vitamin D3, so I'm not about to risk that credibility by making false, misleading or exaggerated claims. I've too many neurologists, headache pain specialists, vitamin D3 experts, CHers and a growing number of migraineurs following my work. A few neurologists have even been kind enough to provide peer reviews and feedback... Two of these neurologists are CHers so are taking this vitamin D3 treatment protocol to prevent their CH. For reference and for those who don't know me, I'm a 74 year old retired Navy fighter pilot with over 3000 hours flying Navy fighters. I have a dated degree in Chemistry circa '67 from the University of Washington, I've been a CHer since 1994 and diagnosed as chronic by neurologists at NIH in 2005. I'm not a doctor so I don't diagnose, prescribe or treat CHers or migraineurs. What I do is provide information outreach on safe and effective non-pharmaceutical CH and MH interventions (O2 and Vitamin D3). That information is based on feedback data from thousands of CHers I've been collecting since September of 2006 on CH.com with my first posts on the benefits of oxygen therapy with hyperventilation as a CH abortive, on 10 December 2010 when I began posting about my experiences preventing CH with vitamin D3 and the cofactors as well as detailed data from the online survey of 293 CHers following the anti-inflammatory regimen CH preventative treatment protocol to prevent their CH. This survey went online over the Internet in January of 2012. When asked for suggestions or answers to CH related questions about this treatment protocol, I generally provide answers based on what many other CHers or I have found. I also suggest CHers and migraineurs see their PCP/GP or neurologist to discuss the anti-inflammatory regimen and to obtain the essential lab tests for serum 25(OH)D, calcium and PTH. I don't sell anything, nor have I taken one cent in renumeration for any of my posts about the benefits of vitamin D3 in controlling CH and MH here at Clusterbusters, over at CH.com or on Migraine.com... My wife will attest to that fact as she does our books. She frequently points out that I've spent an average of $2,500 a year (out of pocket) since 2006 providing information outreach to CHers and MHers on the benefits of oxygen therapy with hyperventilation as well as the benefits of vitamin D3 and the anti-inflammatory regimen in preventing CH, MH and in promoting improved health since December of 2010. I even spent two weeks in early 2018 posting in Facebook CHer and Migraineur groups. I got booted off Facebook after a couple posts on the effectiveness of the anti-inflammatory regimen in preventing migraines. It appears Facebook's Big Pharma sponsors didn't like what I posted so had me blocked. I've been paying $100/year to keep online survey running since 2012 and my annual dues as a member of the American Academy of Neurology (AAN) as a vitamin D3 and Cluster Headache researcher have cost me $260/year since 2013... My annual travel, lodging, meals and registration costs to attend conferences, meetings with neurologists and to make presentations on the effectiveness of oxygen therapy with hyperventilation and the anti-inflammatory regimen since 2009 have averaged $2,000/year. I've made two trips to Switzerland, two trips to Norway and one trip to Germany to attend meetings with fellow CHers at CH conferences and to meet with neurologist like Prof. Dr. med Ottar Sjaastad in Haugesund Norway, Prof. Dr. med. Arne May at his headache clinic at the University of Hamburg Eppendorf (UKE) Germany and Dr. Todd Rozen, MD, FAAN at his facilities in Wilkes-Barre PA. If you'll check the fine print in the ICHD-III beta website, you'll find Dr. May and Dr. Rozen are in the working group responsible for trigeminal autonomic cephalalgias. Dr. Rozen was kind enough to stop by my poster presentation on results from the online survey of CHers taking the anti-inflammatory regimen at the 2014 AAN Annual meeting in Philadelphia, PA. The reason for the Cowboy getup is simple... I grew up on a horse and during my poster presentation, I didn't want anyone thinking I was a neurologist. What most people don't know is I've been quietly going down the rabbit hole in search of answers that will help me define a more detailed pathogenesis of CH and MH as well as determine how and why vitamin D3 and its conutrients/cofactors are so effective in preventing CH and MH. I track all vitamin D3 RCTs as well as cluster headache and migraine RCTs on clinicaltrials.gov and weekly editions of the AAN journal Neurology. This research has taken me into the realm of molecular biology and gene mapping. There are quite a few neurologists doing this kind of research using anti-CGRP monoclonal antibodies as CH and MH prophylaxis, but none using vitamin D3 as a CH or MH prophylaxis. I'm a member of PLOS - a nonprofit publisher innovator and advocacy organization, the Cureous journal of medical research, and Researchgate where leading edge studies and scientific papers like this are published. That said, there are a growing number of physicians now trained in the Coimbra vitamin D3 protocol for preventing multiple sclerosis. Dr. Coimbra has treated over 2000 of his multiple sclerosis patients with his vitamin D3 protocol and his patients have a 95% complete remission rate. So why am I doing all this? It's clearly not for the money... It's also not an ego trip seeking credit for the many findings made public about the safety and efficacy of oxygen therapy with hyperventilation as a CH abortive or the anti-inflammatory regimen as a safe and effective CH prophylaxis... That credit goes to the thousands of CHers who took the leap of faith to try these two CH interventions then took the time to provide their feedback. That feedback is what motivates me to keep doing this as I know the terrible disabling pain of our disorder and that the good news is it doesn't need to be that way. By the way, I'm a strong supporter of CHers using psilocybin or seeds as a safe and effective CH prophylaxis. The data I've collected to date from CHers here at Clusterbusters indicate the vitamin D3 protocol and psilocybin treatments are not mutually exclusive. Although the data is largely anecdotal due to small numbers, It appears these two CH prophylactic treatments have a synergistic effect when taken together. Take care, V/R, Batch
  11. Hey JH, Start the anti-inflammatory regimen and the odds are high, like 80% you won't need oxygen... I say this as the online survey data from 293 CHers indicate 80% of the CHers who start this regimen experience a significant reduction in CH frequency from an average of 3 CH/day down to 3 to 4 CH/week (if you do the math, that works out to an 80% to 85% reduction in CH frequency) in the first 30 days. 50% of CHers who start this regimen experience a complete cessation of CH symptoms in the first 30 days. This online survey of CHers taking this regimen to prevent their CH has been running continuously since 16 December 2011 when I had it put it online. The year over year efficacy since then has remained the same. I estimate over 2000 CHers are taking it today and that's a conservative estimate as readers of my webpage at VitaminDWiki at the following link have downloaded over 18,000 pdf copies of the anti-inflammatory regimen CH preventative treatment protocol. http://is.gd/clustervitd Today alone there were over 100 downloads of this treatment protocol at the following link http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 I'm well aware of the problem you face with MEDICARE's non-coverage ruling for home oxygen therapy as a CH abortive. I joined forces with the American Headache Society in 2009 trying to get this non-coverage ruling reversed. We had two Top Gun, Heavy Hitter neurologists on the battle lines bringing loads of expert experience and testimony on the validity of oxygen therapy as a CH abortive. They included Dr. David Dodick, MD Director of Headache Program, Mayo Clinic, Scottsdale, Arizona, and Dr. Deborah Friedman, MD, MPH, FAAN, Professor of Neurology & Neurotherapeutics and Ophthalmology, University of Texas Southwestern Medical Center. Unfortunately, it appears the bureaucrats and medical bean counters at the Centers for MEDICADE and MEDICARE Services (CMS) were listening to Big Pharma at the time so used their power of the pen to ignore expert testimony and and continue their stupid non-coverage ruling. If you're not going to give the anti-inflammatory regimen CH preventative treatment protocol with 10,000 IU/day vitamin D3 a try, it's time to take up a new hobby... Oxy-Acetylene Welding. I've had an M-Size cylinder of welder's oxygen in my garage since mid 2010. In fact, it's the second cylinder I ordered in 2010 and it's still half full... and with a shed full of logging equipment, I actually weld at times... Take care, V/R, Batch
  12. Hey THMH, Great answers and assessment. I'll add to your comments. In 2005 after turning chronic, I developed a method of oxygen therapy that supports hyperventilation. It used oxygen flow rates between 25 and 40 liters/minute and resulted in average abort times around 7 minutes and better than 95% effective in terms of successful aborts over total attempts. Abort times this short and efficacy were clearly better than that obtained at a flow rate of even 15 liters/minute. I started posting about my experience with this new method of oxygen therapy on CH.com and was told by many that oxygen flow rates this high was dangerous... Well... As a Navy fighter pilot with over 3000 flight hours in Navy fighters breathing 100% oxygen from takeoff to landing (usually aboard ship) on every flight and at very high respiration rates during high G-Force maneuvers during practice and actual combat maneuvers... I knew oxygen flow rates this high were very safe... or I wouldn't have passed my annual flight physicals with PA and Lateral chest X-rays. In 2007, I received an oxygen demand valve from the Linde Group subsidairy here in the US so modified my initial oxygen therapy procedure and breathing techniques to work with the oxygen demand valve. It worked so well I decided to set up a pilot study to capture efficacy data in terms of time to abort by pain level. We conducted the pilot study of the oxygen demand valve method of aborting CH in 2008 with seven CHers (6 CCH, 1 ECH) each recording the pain level at start of therapy and time to abort for every CH over a period of 8 weeks. In all, they collected data on 366 aborts. This method of oxygen therapy required intentional respiration rates that support hyperventilation roughly equivalent to an oxygen flow rate of 40 liters/minute. The breathing procedure used with the oxygen demand valve method of aborting CH (DEVO2) is far from passive. It's hard work huffing and puffing like a big dog with respiration rates up around 20 inhalation-exhalation cycles/minute at forced vital capacity lung tidal volumes. The initial pilot study protocol called for a week of aborts at an oxygen flow rate of 15 liters/minute with a non-rebreathing oxygen mask as a comparative then switch to the oxygen demand valve for 8 weeks. However, after the first participant completed the week at an oxygen flow rate of 15 liters/minute and switch to the oxygen demand valve, his abort times dropped so dramatically, we scrapped the comparison phase and went straight to the oxygen demand valve phase for the remaining six participants. The primary efficacy endpoint for this study was an abort with the oxygen demand valve in 20 minutes or less. The following graphic illustrates the efficacy results in time to abort by CH pain level. 364 aborts met the primary efficacy endpoint. The two aborts that failed to meet the primary efficacy endpoint involved the same unlucky participant who got trapped away from his demand valve system until his CH had already reached a 10 on the 10-Point Headache Pain Scale. He was out shopping when one CH hit and got locked out of his house on the second. These two attempts were technically no-tests due to the delay in starting oxygen therapy, but I elected to count them anyway. This made the efficacy of the demand valve (DEVO2) method of aborting CH 364/366 or 99.4%. No other known CH abortive is this effective. As you can see, the DEVO2 method also produced CH aborts 3 to 4 times faster than aborting CH a flow rate of 15 liters/minute. The mean abort time for the 364 successful aborts was 7 minutes across pain levels 3 through 9. You'll also notice that the abort times increased with CH pain level at start of DEVO2 therapy. This is reason enough to start oxygen therapy at the first sign of an approaching CH. Regarding the change in CH frequency after starting oxygen therapy, the following chart illustrates the change in CH frequency measured in CH attacks per week over the 8 week period each CHer used the DEVO2 method. We called this up-tic in frequency of CH Re-Attacks for the simple reason Medication Overuse Headache (MOH), also known as rebound headache doesn't really apply to oxygen. MOH are more frequently associated with repeated longer term use of opioids, analgesics, triptans and NSAIDs. In addition, oxygen toxicity is not a factor for the period and total time spent breathing 100% oxygen as a CH abortive at normobaric pressure. The increase in Re-Auttacks (up-tic in CH frequency) up to week 4 appear to be caused by a number of factors including an incomplete abort (staying on oxygen breathing normally for 5 to 10 minutes after the pain stops helps increase the time between CH), speed of abort and relatively short physiological period of efficacy (effects wear off in 30 to 45 minutes after returning to normal respiration rates with room air). If CH triggering mechanisms are still active, CH return in 1 or 2 hours. The decrease in CH frequency between week 4 and week 8 is an interesting phenomenon. We think this is due to vascular toning... In other words, the muscles lining the arteries, capillaries and micro vasculature get stronger or tone up with repeated flexing (vasoconstriction) during DEVO2 therapy. This is similar to doing pushups or lifting weights. The more frequently you do these physical activities, the stronger your muscles get... In short, you've toned them up. Although this up-tic in CH frequency between week 1 and week 4 was irritating, the reduction in average weekly CH pain level and and average weekly time to abort over the 8 weeks was continuous. All study participants viewed this initial up-tic in CH frequency as acceptable given the overall high efficacy and speed of abort using DEVO2. The mechanism of action behind the high efficacy and short abort times for the DEVO2 method of aborting CH involves intentionally hyperventilating with 100% oxygen at effective flow rates of 40 liters/min. This blows off CO2 from the lungs faster than the body generates it through normal metabolism. This elevates blood pH (makes it more alkaline) and that elevated pH increases blood hemoglobin's affinity for oxygen allowing it to upload more oxygen and offload more CO2 more rapidly (Bohr effect). The increase in hemoglobin's affinity for oxygen results in a super-oxygenated flow of blood to the brain at roughly 115% of that obtained breathing room air. This results in a very rapid vasoconstriction of the trigeminovascular system which acts as one of the CH abortive effects. This increased blood oxygen super-saturation also results in Calcitonin Gene-Related Peptide (CGRP), Substance P (SP) and Vasoactive Intestinal Peptide (VIP) being metabolized much faster, lowering their cellular concentrations and that increases the CH abortive effect. CGRP, SP and VIP have all been found elevated in serum concentrations during the pain phase of CH and migraine headache (MH). There are three related factoids to consider. The first factoid is although the numbers are limited, the DEVO2 method and procedure of aborting CH appears to be just as effective in aborting migraine headaches. The second factoid is the latest method of oxygen therapy I developed in January of 2010 involving intentional hyperventilation with room air at forced vital capacity tidal volumes for 30 seconds followed by inhaling a lungful of 100% oxygen and holding it for 30 seconds then repeating this sequence until the CH pain is completely gone results in the same CH abort times (an average of 7 minutes) and efficacy as the DEVO2 method. This method of oxygen therapy consumes one tenth the volume of oxygen as the DEVO2 method. This brings the volume of oxygen consumed per CH abort down from 250 to 300 liters to 25 to 30 liters. That works out to a reduction in oxygen cost per abort from one dollar/abort with DEVO2 down to roughly 15 cents/abort with this new method. The third factoid... The anti-inflammatory regimen with 10,000 IU/day vitamin D3 plus the vitamin D3 conutrients is so effective as a CH prophylaxis, my collection of oxygen therapy hardware costing more than $2,500 has been sitting in a storage room, untouched since October of 2010 when I started this vitamin D3 regime. The following graphic illustrates the favorable response rate by day after start of regimen. I estimate over 2000 CHers and many migraineurs have started this regimen since I began posting about my experiences with it on CH.com in December of 2010. This is a conservative estimate as readers of my webpage at the following link http://is.gd/clustervitd on VitaminDWiki.com have downloaded 17,727 copies of the anti-inflammatory regimen treatment protocol since 21 January of 2017. That works out to a little over 22 downloads a day. I'd also like to point out the anti-inflammatory regimen works well with busting. In fact, when taken together they appear to have a synergistic effect in preventing CH. So there you have my 75 cents worth of comments on oxygen therapy... I welcome any comments. Take care, V/R, Batch
  13. Hey Mark, Thank you for your Service and sorry you're having such a rough time. I know what you're going through... A CHer with Migraines makes you a special case. Have the medical types at the VA ordered tests of your serum 25(OH)D, calcium and PTH? If not, you need to ask for these lab tests. What we've found over the last 8 years of CHers and migraineurs taking this regimen to prevent their headaches, is most chronic CHers and migraineurs need a higher vitamin D3 dose and higher resulting 25(OH)D response between 100 ng/mL and 150 ng/mL in order to bring their headaches under control. 25(OH)D concentrations this high cause most PCP/GP and neurologists to freak out saying you're pushing yourself into vitamin D3 toxicity. That's a scare tactic... I'm a chronic CHer and have maintained my serum 25(OH)D concentration between 120 ng/mL and 180 ng/mL over the last three years in order to remain CH pain free. This has required average vitamin D3 maintenance doses between 20,000 IU/day and 40,000 IU/day. My PCP has been OK with my 25(OH)D this high during my annual physicals as long as my serum calcium and PTH remain within their respective normal reference ranges... and they have. We've also found that the Bio-Tech D3-50 water soluble 50,000 IU form of vitamin D3 is faster acting and more potent in terms of elevating serum 25(OH)D than the same dose of the oil based liquid softgel vitamin D3 formulations. I doubt the VA has this brand and strength of vitamin D3 in their formulary so you'll need to order it from amazon.com or iherb.com. If you haven't already done so, restart the Vitamin B 100 Complex. Doing this has helped a number of CHers and Migraineurs. A number of CHers and migraineurs with problems like yours have found taking a first-generation anti-histamine like Benadryl (Diphenhydramine HCL) for a week to 10 days at 25 mg every 4 hours and at bed time helped them kick start the vitamin D3 regimen. What other Rx pharmaceuticals have doctors at the VA prescribed for you besides the CH/MH prophylactics? Most migraineurs find they need a few other supplements in addition to the anti-inflammatory regimen at higher vitamin D3 doses to control their migraine headache (MH). These additional supplements include: 300 to 900 mg/day CoQ10 1000 to 2000 mg/day Turmeric (Curcumin) 4000 mg/day Liposomal Vitamin C Probiotic with a high colony forming count containing a variety of Lactobacillus acidophilus, Lactobacillus plantarum, Bifidobacterium bifidum, and Streptococcus thermophilus. Take as directed on the back label until the bottle is empty. 300 to 600 mg/day Alpha-Lipoic Acid (ALA) 500 mg/day Resveritrol 500 mg/day Quercetin 3 to 6 grams/day L-Lysine with the liposomal vitamin C I know this sounds like a lot of supplements to take on top of the anti-inflammatory regimen, but they don't all need to be taken at the same time. For example, a 20 to 30 day course of probiotic is only needed to start this regimen and following any prescribed course of antibiotic. This helps colonize or re-colonize the friendly bacteria in the GI tract called the microbiome. A number of studies have found the microbiome plays an important role in a healthy immune system. Efficacy data indicate it's best to start this regimen with CoQ10, liposomal vitamin D3 and turmeric (curcumin) and to continue taking them daily. The ALA, Resveritrol, Quercetin and L-Lysine need only be added if there's still no favorable change in migraine frequency. The Atkins or ketogentic diets are also proving to be very helpful in controlling both CH and MH. You start these diets with a 24 hour fast drinking only water (and taking the anti-inflammatory regimen). This fast burns off the blood starch (Glycogen) stored in the liver. When done with the fast, it's zero sugars and that includes commercial fruit juices and soda pop. Zero wheat products including bread, pasta, cereal, cookies, crackers and pizza... Limit foods high in starchy carbohydrates like potatoes and bananas to a small handful a day. Stay away from grain oils like Canola and Mazola/corn oil... They're usually made with genetically modified grains high in Glyphosate, the herbicide in Roundup. Good oils include organic butter, olive oil, avocado oil and my favorite, extra virgin coconut oil. You can eat all the free range organic meats, poultry and eggs you want. A serving or two a week of wild caught fish is great. You can also eat all the organic NON GMO green and colored veggies you want. Limit fresh fruits to a handful a day of dark berries like blackberries, blueberries, raspberries and dark grapes. Organic almonds make a great between meals snack. Be sure to drink at least 2.5 liters of water a day. Having your wife join you on this diet makes it a lot easier... Getting back to lab tests for 25(OH)D, calcium and PTH at the VA... If you tell them you're taking 50,000 IU/day vitamin D3 to control your CH and MH and that you want to ensure you've not pushed yourself into hypervitaminosis-D, they're required to order the 25(OH)D and calcium lab tests. Take care and please keep us posted. V/R, Batch
  14. Hey Henrithree, Thank you for the wonderful feedback on your response to this vitamin D3 regimen and the kind words. You need to understand this regimen is just a preventative and not a one-time, single-shot cure for CH. In order to enjoy its many healthy benefits and CH free quality of life, you'll need to take it daily year round... even if you're episodic. Data we've collected since December of 2010 indicate adults on this regimen burn serum 25(OH)D at a rate of roughly 14 ng/mL/month (35 nmol/L/month). That means if you have a 10 ng/mL (25 nmol/L) reserve above the tipping point serum concentration where CH hit, missing a day or two of vitamin D3 is not a problem. Skip a few weeks or stop taking this regimen and your CH will return. There are a few things you need to know about this regimen. Infections, allergies, surgery and trauma can deplete your 25(OH)D reserves rapidly. They also elevate the CH tipping point serum concentration. Accordingly, if you experience any of the above medical conditions, it's prudent to increase the daily maintenance dose from 10,000 IU/day up to 15,000 IU/day to 20,000 IU/day or higher until the symptoms clear. This should help you avoid falling out of CH remission. As this regimen is good for you, it's also good for the rest of the family. This regimen is so healthy for us and so safe, I have my entire family and close friends taking it and they don't have CH. That includes my three youngest grand kids, 18 months through six years of age. They've been bathed in maternal vitamin D3 since conception and through breast feeding as my daughter and niece started taking this regimen in 2012. All three pregnancies and full-term deliveries were flawless. These three kids have T-Rex immune systems... They don't get sick. On top of that, they have a phenomenal rate of physical and mental development. These three and the other five grand kids along with a herd of grand nephews and grand nieces get a vitamin D3 dose of 50 IU per pound of body weight per day. Finally, when you've been on this regimen for at least a month, please see your PCP/GP or neurologist for lab tests of your serum 25(OH)D, calcium and PTH. When you have the results for these labs in hand, please find the time to take the online survey of CHers taking this regimen to prevent their CH. To start this survey, click on the following link: http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c5ce971022f6 This survey data is important for all of us as it helps convince neurologists and headache specialists the anti-inflammatory regimen is a safe and healthy CH prophylaxis they can suggest to their patients with CH and migraines. Take care and please keep us posted. V/R, Batch
  15. xxx

    New Med

    Hey M, Great question. As long as I'm at a stable vitamin D3 dose, I'll have labs for 25(OH)D, calcium and PTH done once a year a week prior to my annual physical so my PCP and I can discuss the results. I usually have all the other labs needed for my annual physical done at the same time. If I've needed to raise or change the vitamin D3 dose to counter problems associated with an allergic reaction or surgery, I usually wait at least a month following the dose change then go in for the same three labs. Hope this helps. Take care and please keep us posted. V/R, Batch
  16. xxx

    New Med

    Hey CoryAnn, Your husband is on the right track taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and the conutrients to control his CH. The success rate for this regimen based on the results from the online survey of 257 CHers who started this regimen to control their CH over the last 8 years follows. 80% of CHers starting this regimen experience a significant reduction in the frequency of their CH from an average of 3 CH/day down to 3 to 4 CH/week in the first 30 days. The response rate improves over time as some CHers take up to 3 months to respond to this regimen. 50% of CHers who start this regimen experience a complete cessation of their CH in the first 30 days. This regimen works for both episodic and chronic CHers although episodic CHers tend to have a slightly higher response rate. The following chart illustrates the response rate by day after start of regimen by both episodic and chronic CHers reporting favorable responses to this regimen. The following two graphs illustrate the normal distribution of 25(OH)D lab test results taken before start of regimen to establish a baseline and after at least 30 days on this vitamin D3 regimen. This second chart also illustrates the cumulative probability curve (blue line) for CHers responding to this regimen by 25(OH)D serum concentration. What this blue S-shaped sigmoid curve is telling us is roughly a third of CHers taking this regimen need their 25(OH)D serum concentration between 100 ng/mL and 150 ng/mL in order to respond with a significant reduction in CH frequency or a CH pain free response. 25(OH)D serum concentrations this high require average vitamin D3 maintenance doses from 15,000 IU/day up to 35,000 IU/day. Most PCP/GP and neurologists get concerned when they see a patient's 25(OH)D serum concentrations above 100 ng/mL. Accordingly it's very important to see your PCP/GP or neurologist to discuss this regimen and to get lab tests of your serum 25(OH)D, calcium and parathyroid hormone (PTH) after 30 days on this regimen or 30 days after taking a higher vitamin D3 maintenance dose between 15,000 IU/day and 35,000 IU/day. As long as the serum calcium concentration remains within it's normal reference range, there's no hypercalcemia (too much serum calcium) a.k.a., vitamin D3 intoxication/toxicity. For reference, over the last three years, I've maintained my serum 25(OH)D between 120 ng/mL and 180 ng/mL to remain CH pain free. My PCP is OK with my 25(OH)D serum concentrations this high as long as my serum calcium remains within its normal reference range... and it has. I'd also like to point out this is a very safe and healthy regimen. I started providing outreach information on the benefits of this regimen in December of 2010 over on CH.com. In all that time there have been no reports of vitamin D3 toxicity or adverse events that required medical treatment. This regimen is so safe, I have my entire family taking it. The youngest include a granddaughter, grandson and a grandniece. These three kids have been bathed in maternal vitamin D3 since conception and through breast feeding as their mothers have been taking the anti-inflammatory regimen since 2012. All three pregnancies and full-term deliveries were flawless. Moreover, these are the healthiest kids I've ever seen. They don't get sick... They also have a phenomenal rate of physical and mental development. My daughter and husband are on assignment in Germany so Fred, a.k.a., Winefred, the oldest of the three grand kids, is now six and attending Kindergarten in Germany... speaking flawless Hochdeutsch (German). It's difficult to get her to speak in English during FaceTime calls... Take care and please keep us posted. V/R, Batch
  17. Hey DM, In the days before I developed and started taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 (2005-2010), I drove to work and back home with my M60 on the floor behind the drivers seat daily driving 25 miles up 395 to the beltway to McLean, VA . I configured my M60 with an InGage® 0-60 liter/min regulator from FlotecO2 and oxygen demand valve. If I got hit while driving, I pulled over to use it. That made for some interesting discussions with the State Patrol when they pulled in behind me to see why I was stopped along the freeway... If your CH are hitting at night, strap the M60 with the luggage. Take care, V/R, Batch
  18. xxx

    Topamax?

    Henri, Your feelings are correct... Many of us who have tried Topamax refer to it as Dopeymax as it leaves you in goofy state and doesn't do much to prevent CH. Take care and please keep us posted. V/R, Batch
  19. Hey Stephan, That's a very healthy list of natural nutrients... Add 10,000 IU/day vitamin D3, 400 mg/day magnesium (chloride or glycinate), a mature multi with zinc and boron, 1000 to 2000 mg/day Omega-3 fish oil and a good vitamin B complex and you'll have a fantastic natural CH preventative regimen that will let you drink beer, wine and other spirits without a hit. A change in diet to a ketogenic or Atkins diet with zero sugars, zero wheat products and only limited amounts of carbohydrates plus 2.5 liters of water a day will also be a big help. You can eat all the free range organic meats, poultry and eggs you want. A serving or two of wild caught fish is also great. You can also eat all the organic NON GMO green and colored veggies you want. Limit fruits to dark berries like blueberries and blackberries. Natto is a rich source vitamin K2... the menaquinones (MK4 and MK7). It acts like a catalyst to improve bone mineral density, where vitamin K1 is the clotting vitamin. See the following link for the anti-inflammatory regimen CH preventative treatment protocol. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Readers of my web page at VitaminDWiki at the following link http://is.gd/clustervitd have downloaded over 15,000 copies of this CH preventative treatment protocol in the last two years. Take care and please keep us posted, V/R, Batch
  20. Plhbn, Great questions. The vitamin D3 dose for children I've been using for my grand kids over the last 8 years is 50 IU per pound of body weight per day. If you're using the metric system it's 110 IU per Kg body weight per day. This is a very safe and conservative dose so you can round up or down to the nearest 1000 IU. For girls age 78 months, the 50th percentile weight is around 47.3 lbs or 21.5 Kg so the calculated dose would be 2,300 IU/day. In this case a vitamin D3 dose of 2000 IU/day will be just fine. My grand kids also take a multi-vitamin daily with magnesium, zinc, the B vitamins, and vitamin C. Regarding oxygen therapy at flow rates that support hyperventilation (25 to 40 liters/min), I developed this procedure in 2005 a few days after being diagnosed with chronic CH. I modified this procedure to work with an oxygen demand valve in 2007 and hold a patent (now expired) on this method of procedure that was issued in 2009. We did a pilot study of the demand valve method of oxygen therapy in 2008. During this study, seven CHers, 6 chronic and 1 episodic, recorded pain levels and time to abort using an oxygen demand valve or a 0-60 liter/minute InGage® regulator from Flotec for every CH abort for a period of 8 weeks. Together, they collected data on 366 aborts. One study participant collected abort time data while using an oxygen flow rate of 15 liters/minute as a comparison. The goal of the oxygen demand valve (DEVO2) method of oxygen therapy is a CH abort in 20 minutes or less. The results are illustrated in the following graphic. The average time to abort across CH pain levels 3 through 9 on the 10-Point Headache Pain Scale was 7 minutes. Only 2 of the 366 aborts with this method of therapy took longer than 20 minutes, a success rate (efficacy) of 99%. In both of these cases, the study participant was trapped away from his oxygen demand valve (once while out shopping and the second time when locked out of his house), so was unable to start oxygen therapy until the pain level was 10. As you can see, the time to abort when hyperventilating with 100% oxygen using an oxygen demand valve is three to four times faster than inhaling oxygen at a flow rate of 15 liters/minute. It's also interesting to note that the time to abort increases with CH pain level. This gives new meaning to the recomendation to start oxygen therapy ASAP at the first sign of an approaching CH. In 2010 I developed a new method of oxygen therapy that works well with low flow rate oxygen regulators and oxygen concentrators when used with another of my inventions, the Redneck Oxygen Reservoir breathing system. This method combines hyperventilating with room air at forced vital capacity tidal volumes for 30 seconds, followed by inhaling a lungful of 100% oxygen and holding it for 30 seconds. You keep repeating this sequence until the CH pain is completely gone. This method of procedure results in a complete abort of a CH in an average of 7 minutes better than 95% of the time and is just as effective as hyperventilating with an oxygen demand valve except it uses one tenth the amount of oxygen. Where an abort with an oxygen demand valve can consume 250 to 300 liters of oxygen, this new method consumes 25 to 30 liters of oxygen per abort. You can make a DIY Redneck oxygen reservoir bag from a new kitchen trash bag, tubing from the disposable oxygen mask, a plastic soda bottle with cap and bottom cut off, some electrician's tape and duck tape. They work great! Fill it up ahead of time and you're ready to rock and roll when the next CH hits. Remember to check for leaks. The Redneck oxygen reservoir bag should remain inflated over night if all the taped openings have a gas tight seal, the bottle cap is on tight and the oxygen tubing is plugged into the regulator barb fitting. The best procedure to use involves hyperventilating with room air at forced vital capacity tidal volumes for 30 seconds, then remove the cap and inhale a lungful of oxygen from the Redneck oxygen reservoir bag (replace the cap) and hold it for 30 seconds. Keep repeating this sequence until the CH pain is gone. This usually take an average of seven (7) cycles... 7 minutes and consumes ~ 25 liters of oxygen per abort. Hmmm... "Forced Vital Capacity Tidal Volumes." I can hear the wheels turning... Wuzat! This is hyperventilating with room air by exhaling forcefully until it feels like your lungs are empty (They're Not!). At that point without delay do an abdominal crunch like doing situps and hold the crunch until your exhaled breath makes an audible wheezing sound for a second. Then without delay inhale another lungful of air and repeat the forced exhalation with crunch. If you're doing this properly, you should be doing 10 of these exhalation-inhalation cycles in 30 seconds. On the 10th exhalation, hold the crunch for 2 to 3 seconds. This squeezes out an additional half to full liter of exhaled breath highest in CO2 concentration. At that point without delay, take the cap off the Redneck oxygen reservoir bag and inhale a lungful of oxygen and hold it for 30 seconds. (remember to replace the bottle cap). Try to relax while holding the lungful of oxygen and listen to your body. If you've done this breathing technique properly, you should feel the symptoms of paresthesia - a very slight prickling or tingling sensation of the lips, face, hands and feet/ankles. This is normal and a good sign you're doing this procedure correctly. You may even feel a slight cooling of the lower back above the waist. This is due to the constriction of the arteries and capillaries in the skin that drops the skin temperature.... what we want to happen to the vasculature in and around the trigeminal ganglia (part of the mechanism of abort). I hope all this helps. Take care and please keep us posted. V/R, Batch
  21. Hey Plhbn, I trust you're still CH pain free. Boron, like the other conutrients in the anti-inflammatory regimen, supports vitamin D3 pharmacokinetics, (what the body does to vitamin D3) and pharmacodynamics (what vitamin D3 does to the body). For example, magnesium, zinc and boron support the enzymatic processes that hydroxylate vitamin D3 to 25(OH)D3 and further hydroxylate 25(OH)D3 to 1,25(OH)2D3, the genetically active metabolite. These enzymatic processes take place in two domains, the bloodstream and at the cellular level throughout the body. What happens in the bloodstream becomes a function of calcium homeostasis - building and sustaining bone mineral density. The cellular domain is what is important to us as cluster headache sufferers (CHers) This is where 1,25(OH)2D3 initiates the pharmacodynamics through the genetic expression process that helps us prevent CH. This is where zinc, vitamin A (retinol) and Omega-3 fatty acids assist vitamin D3 in lowering the genetic expression of calcitonin gene-related peptide (CGRP), Substance P (SP) and other neuroactive peptides that trigger and sustain CH within neurons in our trigeminal ganglia. Regarding testosterone, vitamin D3 plays an active role in genetic expression in more cell types than just the neurons. In short, every cell type and system in the body functions better if there's sufficient vitamin D3 and that includes the endocrine system where testosterone is secreted. As a side note, I caution CHers who have their spouses join them in taking the anti-inflammatory regimen, that there are several studies that have found fertility increases significantly when couples at childbearing age take the anti-inflammatory regimen with at least 10,000 IU/day vitamin D3. That said, if making babies is the goal, I know of no better way of ensuring a happy, healthy pregnancy and incredibly healthy babies. I've had my daughter and niece taking this regimen for many years. Together, they've delivered three babies who were bathed in maternal vitamin D3 from conception through breast feeding. These babies have displayed an exceptional rate of physical and mental growth. They don't get sick and all three are budding Einsteins... Please keep us posted on your progress with the anti-inflammatory regimen. When you've been on it for at least 30 days, see your PCP for lab tests of your serum 25(OH)D, calcium and PTH. When you have the results, please take the time to take the online survey of CHers taking this regimen to prevent their CH. To start this survey, click on the following link: http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c5ce971022f6 Be sure to indicate in the comments section of this survey if you started this regimen with the accelerated vitamin D3 loading schedule. Take care, V/R, Batch
  22. Henri, Thank you for the kind words and wonderful feedback on your experience with the anti-inflammatory regimen. Many of us know the exciting feeling waking up in the morning knowing you've slept through the night CH pain free. There are a few things you need to know in order to maximize the CH preventative capability of this regimen. For starters, its a CH preventative, not a cure. Accordingly, you'll be best served by taking this regimen year round. Most of us do this as a way of life... Staying on this regimen year round will accomplish two things. The first is you'll likely skate through your next CH episode pain free. The second is your overall health will improve as this regimen strengthens your immune system. See the following VitaminDWiki link titled "Vitamin D prevents or treats 86 health problems" at the following link: https://vitamindwiki.com/Proof+that+Vitamin+D+Works If there's an up-tic in the frequency of your CH return after a few days, don't get discouraged, this happens to roughly 5% of the CHers after starting this regimen. Doubling the magnesium dose to 800 mg/day split 400 mg with breakfast and the other 400 mg with the evening meal usually brings CH back under control. There are additional supplements listed in the anti-inflammatory regimen CH preventative treatment protocol at the following link that many CHers have found helpful in this case. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 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). If you get any static about approving these lab tests, just tell your PCP/GP you've been taking 10,000 IU/day vitamin D3 and want to ensure there's no hypervitaminosis D. Once you have your lab results in hand, please find the time to take the online survey of CHers taking this regimen to prevent their CH. To start this survey, click on the following link: http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c5ce971022f6 I'll use data from this survey to illustrate the benefits of this very effective and very safe method of CH prophylaxis. Finally, as the health benefits of this regimen are so great, get the rest of your family taking it. I've had my entire family taking this regimen for many years and that includes the two youngest, my granddaughter Fred, a.k.a. Winefred and her little brother Orrin. These two have been bathed in maternal vitamin D3 since conception through breast feeding. They're remarkably healthy with very rapid physical and mental development. Fred was speaking fluent hochdeutch (German) at age two and at 5, she is now attending Kindergarten in Germany... Take care and please keep us posted. V/R, Batch
  23. The Flu season is here... For CHers taking the anti-Inflammatory regimen with 10,000 IU/day vitamin D3 and conutrients, you're in good shape with a very low probability of catching the flu. For the rest, 5,000 IU/day to 10,000 IU/day vitamin D3 plus at least 400 mg/day magnesium should provide enough to supercharge your immune system to ward off the flu bug. People with a low vitamin D3 status as measured with the 25(OH)D lab test <30 ng/mL (75 nmol/L) will benefit most. The really important benefit of taking vitamin D3 to prevent the flu is there are no adverse side effects... You can't say that for the flu vaccine... See the following: https://articles.mercola.com/sites/articles/archive/2017/02/27/vitamin-d-better-than-flu-vaccine.aspx https://vitamindwiki.com/tiki-index.php?page_id=1304 You can spend the rest of the weekend and most of next week reading through the links in this second link to VitaminDWiki. Take care, V/R, Batch
  24. Hey Big J, Benadryl works best to block the histamin H1 receptor when it's vacant. If histamine molecules have already occupied available H1 receptors, usually characterized by a CH... the Diphenhydramine will be useless. Moreover, the histamine triggers the expression of CGRP and SP, both of which are responsible for neurogenic inflammation and the pain we know as CH. The only way around this is to take 25 mg Benadryl (Diphenhydramine HCL) every 4 hours during the day and hopefully during a CH pain free period. This allows the Diphenhydramine to pass through the blood brain barrier to block vacant histamine H1 receptors before the histamine arrives. You need to make a Redneck oxygen reservoir bag our of a clean kitchen trash bag, plastic Coke bottle with cap and the bottom cut off, some electrician's tape and some duck tape. Use the search tool at the top of this page and key in Redneck Reservoir to find the "How To" DIY instructions... Take care and please keep us posted. V/R, Batch
×
×
  • Create New...