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Batch

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Everything posted by Batch

  1. Batch

    Just to put it in perspective

    1 - Cluster headaches – One Bio-Tech D3-50/week plus all the cofactors prevents my CCH completely 2 – Shingles – A 50,000 IU dose of vitamin D3 stopped vericella zoster and its pain overnight. Continued dosing at 50,000 IU/day plus the cofactors for 3 more days prevented its spread, postherpetic neuralgia and rash. PCP amazed. 20 - Pain after surgery – I loaded vitamin D3 at one Bio-Tech D3-50/day plus cofactors and extra magnesium for a week prior to abdominal surgery. Came off pain meds 24 hrs after surgery. Restarted vitamin D3 at one Bio-Tech D3-50 plus cofactors 2nd day after surgery. Minimal pain and rapid wound healing surprised my surgeon when he removed the staples.
  2. Batch

    15 year remission?

    Hey Steve, From my experience, it's best to jump on the oxygen at the first sign of an approaching CH. The sooner the better. The longer you wait, the higher the pain level and that ends up making your oxygen abort times longer. I'd also suggest you check out the anti-inflammatory regimen with 10,000 IU/day vitamin D3 or more along with the vitamin D3 cofactors. You can download a PDF copy of this treatment protocol at the following vitaminDwiki link: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 I suspect the return of your CH is due to a drop in your 25(OH)D3 serum concentration (vitamin D3 concentration). Are you getting less direct sunlight than usual? We've found that a vitamin D3 insufficiency/deficiency is very common among CHers. The anti-inflammatory regimen can fix that deficiency and in the process, get you back CH pain free. Take care and please keep us posted. V/R, Batch
  3. Batch

    Prescription Frustrations - long rant

    Chris, Great post! It should help Signals with his problem obtaining welder's oxygen as an abortive for his CH. I share your frustration with the draconian regulations that prevent CHers from obtaining home oxygen therapy as an abortive for their cluster headaches. You covered the important parts of obtaining and using welder's oxygen as a CH abortive and that's fantastic. I did the same thing in September of 2010 following a move from Virginia back home to Bremerton, Washington when my Rx for oxygen ran out. $250 for the M-Size welder's oxygen cylinder at the local welding supply outlet 2 miles from home and $35 to exchange the empty for a refilled cylinder. I actually do some brazing, but most of the time, it's cutting skids and chokers to pull logs. We live in the woods on the Kitsap peninsula in the heart of Puget Sound, Washington 20 miles due West of Seattle near Bremerton. The gravel driveway, a.k.a., a logging road from the county road to the house is 900 feet long and crooked as a dog's hind leg as it winds through heavy stands of secondary growth Douglas Fir, Cedar, Alder and Big Leaf Maple trees. We don't get many unannounced visitors... A windfall a year across the driveway is par for the course so I keep two Stihl chainsaws gassed and ready. Windfalls are also a convenient source of fire wood. I've a transfiller that I used to fill my aluminum M60. It's configured with a Flotec 0 to 60 lpm regulator with DISS fitting for my Carnét oxygen demand valve that enabled me to abort my CH in an average of 7 minutes at respiration rates that support hyperventilation. All totaled, I've easily $2500 worth of oxygen equipment, but haven't used it for more than a week since October of 2010 when I developed and started taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 plus the cofactors. The aluminum M60, Flotec regulator and Carnét oxygen demand valve sit in the laundry room under a plastic bag. I've still 800 psi remaining in the second welder's oxygen cylinder refill I purchased in early October of 2010. Getting back to the difficulty of obtaining oxygen therapy for our cluster headaches and what we can do about it. For starters, we can thank the unelected bottom feeding bureaucrats at the Centers for Medicare and Medicaid Services (CMS) for their non-coverage determination for home oxygen therapy. This non-coverage determination prevents Medicare beneficiaries with CH from obtaining home oxygen therapy. They're not alone. We can also thank the Big Pharma lobbyists from K Street and their bought and paid for legislation passed by money hungry members of Congress over many years for the draconian regulations on home oxygen therapy that allow too many medical insurance companies to decline coverage for this very safe and effective CH abortive. I tried to have this non-coverage determination changed in 2008 but was blown off by CMS. In 2009 I joined forces with a team from the American Headache Society (AHS) to do battle with CMS in an attempt to overturn this absurd non-coverage determination for home oxygen therapy for CHers. The AHS effort was conceived and spear headed by Dr. Fred Sheftell, MD, Presisent AHS, a chronic migraineur. In early 2010, Dr. Sheftell retired and turned the reins on this effort over to a pair of heavy hitter neurologist, Dr. David Dodick, MD, the new President of AHS, and Dr. Deborah Friedman, MD, M.P.H. They presented a binder with 30 clinical trials, case studies and findings from the European Federation of Neurological Societies (EFNS) that recommended oxygen therapy as a safe and effective first abortive of choice for cluster headache as evidence. They also had a team of neurologists and headache specialists standing by as expert witness to provide testimony as to the safety and effectiveness of oxygen therapy as a CH abortive. The bureaucratic swamp turds at the CMS Coverage Analysis Group disallowed the entire binder as medical evidence when none of the studies met the RCT gold standard of being randomized, blinded and placebo controlled. They also declined to meet with the expert witnesses as none could provide a gold standard RCT as medical evidence. The rest is history. I've attached the letter sent by Dr. David Dodick to the head of the CMS Coverage Analysis Group. It's eloquent and to the point, but had no effect. The Non-Coverage determination still stands. I've been a part of two efforts to overturn this non-coverage determination and know of the third from here at Clusterbusters. Two have been bottom up and the third from here at Clusterbusters tried a middle up approach with support of a congressman. Unfortunately too many members of the House and Senate are on the take from Big Pharma so the Clusterbuster effort failed in a legislative attempt to overturn this non-coverage determination. The only way we're ever going to achieve success is with a top down approach by President Trump. If President Trump takes action to fix this terrible regulation, it will get fixed! The best way to do this is to contact the White House at the following link. https://www.whitehouse.gov/contact/ It will give you the option of "Contact the President" or "Help with a Federal Agency." Select either option, (You can go back a second time and select the other option to cover both information avenues). Fill in the blanks then in the final blank "What would you like to say" start out with the regulations governing home oxygen therapy for cluster headache sufferers on MEDICARE are too restrictive to the point Medicare and Medicaid beneficiaries with cluster headache are not covered.  Point out that President Trump made a promise to the American people he would help cut the red tape and restrictive regulations that make things like home oxygen therapy so costly and difficult to obtain. Give your own story in your own words like how you're forced to use Triptans like Imitrex costing $900/month for the nine shots per month covered under Medicare as an abortive but the estimated $100/month for home oxygen therapy is not covered. The average cluster headache sufferer has three of these terribly painful headaches a day, 90 a month, yet Medicare will only cover relief for 9 of these terrible headaches a month with Imitrex. Home oxygen therapy would cost much less at $90 to $100 per month and could be used for all cluster headaches not just 9 a month with Imitrex, then be forced to suffer agonizing pain during 80 more of these cluster headaches without any relief. Ask why an expensive pharmaceutical like Imitrex is covered as a cluster headache abortive for Medicare and Medicaid beneficiaries, yet USP oxygen is not. Ask if existing legislation and regulations governing coverage for home oxygen therapy has been influenced by Big Pharma to their advantage in the market place? The simple solution is to make home oxygen therapy an OTC item. This would eliminate burdensome regulations, increase competition and ultimately lower the cost of home oxygen therapy. The savings at HHS/CMS would also be huge as a large part of the CMS budget is spent administering prescriptions for oxygen and the durable medical equipment associated with home oxygen therapy for Americans with COPD. The American Lung Association (ALA) thinks there may be as many as 24 million American adults living with COPD and that doesn't count Americans with Bronchitis or Emphysema who also need supplemental oxygen. Unfortunately, as hundreds of bureaucrats at CMS and thousands of their DMEPOS contractors who regulate access to home oxygen therapy, have their snouts in the taxpayer funded feeding trough. So this is likely a non-starter. What would work is a President Trump request to Congress for an amendment to 21 USC, §360ddd–1. Regulation of medical gases, a,(3),(A), (i) by adding "or cluster headache or migraine headache to (I) which presently states "In the case of oxygen, the treatment or prevention of hypoxemia or hypoxia. This needs to be amended to read as follows: "(I) In the case of oxygen, the treatment or prevention of hypoxemia or hypoxia or as an abortive for cluster headache or migraine headache." Again, use your own words. If one or two up to maybe five CHers go to this White House website and complain about home oxygen therapy, it's likely nothing will happen. If the number of hits goes above 50, they have tracking systems that will flag this topic. Then the odds of meaningful action go up big time. Take care... and Take Action! V/R, Batch Comments on Proposed Decision Memo CAG-00296R-1.pdf
  4. Batch

    Vitamine D3

    Hey Hammered, I've sent you a PM as Spiny indicated I would. My PM covers everything you'll need to do to get started on the anti-inflammatory regimen and then some. Please keep us posted. Take care, V/R, Batch I
  5. If used properly with hyperventilation, oxygen inhalation therapy is nearly as fast as subcutaneous triptan injections. It has no adverse side effects and again using the procedure of hyperventilating with room air at forced vital capacity tidal volumes for 30 seconds followed immediately by inhaling a lungful of 100% oxygen and holding it for 30 seconds then repeating this sequence until the CH pain is completely gone usually takes an average of seven cycles - 7 minutes consuming less than 30 liters of oxygen , ~5 cents worth of oxygen gas/abort.
  6. Batch

    Vitamine D3

    Hey Cocobongo, Sorry about the delay in responding. We were on travel to stay with kids most of December so I missed your post above on the 12th. Your English is great and it appears you've a handle on the CH beast. Please keep me posted. Take care and Happy New Year. V/R, Batch
  7. Batch

    Stomach pain while on d3 regimen

    To All, As a member of the American Academy of Neurology (AAN) as a vitamin D3 and cluster headache researcher, I receive one or more of the AAN publications a week. There was a recent article about reactions to treatments with chimeric "ximab" and humanized "zumab" monoclonal antibodies (mAbs). The general theme is a serum sickness with an allergic reaction followed by developing Anti-Drug Antibodies (ADA) in the form of Anti-Chimeric Antibodies measured by lab tests. These Anti-Chimeric ADA reactions to mAbs like Galcanezumab (emgality) occur roughly a week to 10 days after the initial mAb injection and they are due to the body's immune system reacting to the mouse genes it contains. As allergic reactions can affect the GI tract including the stomach, I suspect it's the emgality that's causing Luis's stomach issues and concur he should see the physician who prescribed the emgality and explain his side effects. My rationale for saying this is Luis reported on 20 December 2019, "The only side effect has been some itching, but I’m not sure if it’s from emgality or dry skin." This was after reporting he started emgality on 13 December and well before he started the vitamin D3 regimen on 23 December. In the 10 years I've been providing information outreach on the anti-inflammatory regimen and receiving detailed feedback plus direct feedback from the online survey of 320 CHers taking this regimen, there have been no reports of paresthesia, itching or allergic reactions attributed to vitamin D3. There have been several reports of osmotic diarrhea from the magnesium. Take care, V/R, Batch
  8. Batch

    New to the group

    Hey MRUPE, Thank you for the kind words. All humility aside, if the CH beast is jumping ugly making your life miserable, you're missing a very safe and effective CH prophylaxis by not starting the anti-inflammatory regimen. I'm a 75 year old retired Navy fighter pilot, with a degree in Chemistry, a CHer since 1994, chronic since 2005 and a pragmatist. If I were faced with a CH intervention offering 80% to 90% efficacy that's proven to be safe and effective over the last 10 years with direct feedback from over 300 CHers from 30 different countries including lab test data, I'd go for it. But that's just me. I'm confident the Gold Standard RCT of this regimen currently in planning as a CH prophylaxis will confirm the results from the present Pre-Post, Open Label Intervention study that's been running for the last 9 years. Waiting for the results of this RCT while the CH beast jumps ugly three or more times a night, even with oxygen therapy for another year makes no sense to me. It's going to take that long. At last count, there are 5 doctors taking this regimen to prevent their CH and two of them are neurologists. This regimen is so safe, I've had my entire family and close friends taking it since 2011. That includes my daughter and niece who have been on this regimen since 2011. Between them they've gone through three flawless pregnancies and deliveries. Their OB's were concerned at first over the 10,000 IU/day vitamin D3 dose. However, after each of them had two sets of labs for 25(OH)D3, calcium and PTH and the results all came back in the green coupled with the flawless pregnancies, deliveries and super healthy babies, these two OBs are now suggesting the anti-inflammatory regimen to all their expectant and potential mothers in waiting. At this point I have three grand babies who were bathed in maternal vitamin D3 from conception through breastfeeding. We're talking babies with Einstein intellect, Olympic class physical development and T-Rex immune systems... they just don't get sick. They now take vitamin D3 at 50 IU/lb of body weight/day plus a multi-mineral and vitamin chewy. Fred, a.k.a., Winefred, her photos shown below, is the oldest now at 6. She was speaking fluent Hochdeutsch at age two, attended pre-kindergarten at age 4 in Heidelberg Germany where only German was spoken. Little brother Orrin, now 2 is also bi-lingual. Take care and please keep us posted. V/R, Batch
  9. Batch

    New to the group

    Nice try... You'll see the name soon enough when recruiting starts. Until then, my lips are sealed. I don't want any goon squads from Big Pharma screwing the pooch.
  10. Batch

    New to the group

    Hey MRUPE, Welcome to Clusterbusters. You've come to the right place. We know what you've been going through and the good news is it just doesn't need to be that way. You've already discovered the wonderful benefits of oxygen therapy. I only wish more CHers would pressure their neurologists to obtain it. As you appear to be taking a discerning approach in selecting a CH preventative treatment protocol, you may find the following of interest. I'm heavily biased to suggest the anti-inflammatory regimen with vitamin D3 and the cofactors as a safe and effective method of controlling/preventing your CH. I'm also biased to suggest psilocybin as another safe and effective method of controlling your CH. I've seen it work many times when all else failed. As the guy who developed the anti-inflammatory regimen and started taking it in October of 2010, I consider this method of CH intervention a very safe bet. I've been essentially CH pain free ever since. I started providing information outreach on the benefits of this vitamin D3 regimen in December of 2010 and I've been running an online survey of CHers taking this regimen since December of 2011. As of 30 December 2018, 290 CHers had completed and submitted their responses to this survey. The results are impressive to say the least. In terms of raw efficacy, the 30-day response rate for the entire cohort finds over 80% of CHers starting this regimen experiencing a significant reduction in the frequency of their CH from a mean of 3 CH/day down to a mean of 3 CH/week. Moreover, 52% of CHers starting this regimen experience a complete cessation of CH symptoms in the first 30 days after starting this regimen. It's significant to note that over the 10 years I've been providing information outreach on the benefits of this regimen in preventing CH, that there have been no reports of adverse events requiring medical attention and no cases of hypercalcemia, a.k.a., vitamin D3 intoxication/toxicity. I've analyzed the results of every RCT and study involving CH and migraines. None of them including verapamil, have reported or concluded a level of efficacy that comes even close to matching the safety and efficacy of vitamin D3 in preventing CH. The basic anti-inflammatory regimen supplements illustrated in the following photo haven't changed much since December of 2011 with the exception of vitamin D3. I began suggesting the Bio-Tech D3-50 50,000 IU water soluble form of vitamin D3 in July of 2018. I began suggesting the Bio-Tech D3-50 after finding it was faster acting with a higher bioequivalence in elevating serum 25(OH)D3 than the same dose of the oil-based liquid softgel vitamin D3 formulations. It's also less expensive. Now for the exciting news regarding the raw efficacy of this regimen in preventing CH. I took a download of the survey database a week ago on 30 December and have been crunching the numbers ever since. Surveys submitted during 2019 indicate a 30-Day favorable response rate of over 90% and complete cessation of CH symptoms at greater than 65%. I'm not going to give the actual raw efficacy figures as I hope to publish these results at some point later this year and I don't want my manuscript rejected for self-plagiarism. I've already had two of my manuscripts on this study rejected for this reason. I know the medical evidence purists will say this was not a randomized, blinded and placebo controlled RCT, so lacks strength as medical evidence. No argument. However, as a CHer since 1994 and chronic since 2005, I'm not going to pole vault over mouse turds... To CHers, there's no difference between a CH prevented by an intervention or placebo effect. In short, I'll take the placebo effect any day to avoid the terrible pain of our disorder. Moreover, as for the infamous p value reported in RCTs, that over 300 CHers from over 30 countries have enjoyed the same efficacy of this regimen over the last 9 years of this study, this level of efficacy is hardly a coincidence. We've also made some adjustments to the treatment protocol. I say "We" as none of this would have been possible without the participation of thousands of CHers here at Clusterbusters and CH.com over the last 10 years. In a very real sense, this is your regimen and treatment protocol. Direct feedback from CHers taking this regimen is so valuable. For example, this feedback indicates the efficacy of this regimen increases with time and higher serum concentrations of 25(OH)D3 due to higher daily maintenance doses of vitamin D3. These protocol adjustments have been simple, yet effective. When I first started posting about the efficacy of this regimen in December of 2010, it was one size fits all with 10,000 IU/day vitamin D3 plus the cofactors. The first adjustment involved starting this regimen with a 2-Week or 4-Week accelerated vitamin D3 loading schedule to elevate serum 25(OH)D3 more rapidly and achieve a favorable response more rapidly. Over the next two years that loading schedule evolved to a 12-Day loading schedule taking 50,000 IU/day vitamin D3 for 12 days. It was just as effective and took less time to reach a therapeutic effect. I attribute the increase in the raw efficacy of this regimen and CH preventative treatment protocol to the switch to the Bio-Tech D3-50 and the 12-Day accelerated vitamin D3 loading schedule. My analysis of survey data through the end of 2018 indicated the mean 25(OH)D3 serum concentration for Episodic CHers experiencing a favorable response to the anti-inflammatory regimen was 80 ng/mL while the mean 25(OH)D3 serum concentration for Chronic CHers experiencing a favorable response to the anti-inflammatory regimen was 90 ng/mL. Clearly, one size does not fit all... Accordingly, I've made the following changes to the vitamin D3 dosing strategy regarding the target 25(OH)D3 serum concentration ranges and accelerated vitamin D3 loading dose duration ranges. Episodic CHer Target: 80 to 100 ng/mL - Load at 50,000 IU/day for 12 - 14 days Chronic CHer Target: 90 to 120 ng/mL - Load at 50,000 IU/day for 14 - 16 days Migraineur Target: 100 to 140 ng/mL - Load at 50,000 IU/day for 16 - 18 days It's important to understand these suggested 25(OH)D3 serum concentration target ranges and loading schedules are starting points for the average CHer. Many of us (like me) will require a higher 25(OH)D3 serum concentration, a longer period of loading at 50,000 IU/day and a higher maintenance dose to experience and maintain a CH pain free response. At the completion of these loading schedules reduce the vitamin D3 intake to an initial maintenance dose of 10,000 IU/day with the oil-based liquid softgel vitamin D3 formulations or if you're taking the suggested Bio-Tech D3-50, you'll need to take one (1) of these 50,000 IU water soluble vitamin D3 capsules a week. Doing the math, that works out to an average dose of 7,140 IU/day. Given the higher bioequivalence of the D3-50, this should be sufficient for most CHers. Changing the dose is a simple matter of adding or subtracting a day or more between doses. The following chart illustrates the last three years worth of my labs for serum 25(OH)D3, calcium and PTH. As you'll see, as a chronic CHer, I've maintained my 25(OH)D3 well above 120 ng/mL. It's been as high as 188 ng/mL to remain CH pain free during a major allergic reaction to mold spores. I've averaged 150 ± 4 ng/mL for the first 7 months of 2019. If you haven't gotten the message from my labs, don't be afraid to take your serum 25(OH)D3 concentration as high as needed to experience a lasting CH pain free response. My PCP has no problems with my 25(OH)D3 serum concentration this high as long as my serum calcium remains within its normal reference range (in the green), and it has as you can see in my charts above. You'll also note that my serum PTH mirrors serum calcium. This inverse relationship between serum 25(OH)D3 and PTH concentrations indicates normal calcium homeostasis. In short, when serum calcium goes up to a high normal, serum PTH drops to a low normal. This is a classic indication of calcium homeostasis in action that helps prevent hypercalcemia, a.k.a., vitamin D3 intoxication/toxicity. Before I go any further, it's essential for CHers to see their PCP/GP or neurologist, whoever has the best visibility of their overall medical history and prescribed medications if any, to discuss this regimen before starting it and to ask for a set of labs for serum 25(OH)D3, calcium and PTH. It's not uncommon for some physicians to avoid recommending this regimen or even suggest CHers not start it and that's perfectly natural. They're concerned about malpractice suits. If you feel strongly enough about starting this regimen, have your doctor note any concerns in your medical records, but try to make your doctor part of your team while starting and continuing this regimen. You'll need another set of labs for your serum 25(OH)D3, calcium and PTH, 30 days after starting this loading schedule. Ask your PCP/GP or neurologist to have your lab orders for 25(OH)D3, calcium and PTH sent to the nearest Quest Diagnostics collection center. The rationale for doing this is simple. Quest Diagnostics uses the 25(OH)D Liquid Chromatography Dual Mass Spectroscopy (LC-MS/MS) assay that's good to a maximum 25(OH)D (combined D2 and D3) serum concentration measurement of 512 ng/mL. The DiaSorin 25(OH)D assay used in most medical clinics can only measure 25(OH)D up to a maximum serum concentration of 117.4 ng/mL. As you may need a higher 25(OH)D3 serum concentration than 117.4 ng/mL, the LC-MS/MS assay for 25(OH)D3 is the only way to go. Try to get copies of your labs sent to you so you can track your progress. If you register at MyQuest, it's free, at the following link, https://myquest.questdiagnostics.com/web/home you'll have access to all your lab results as soon as your doctor has acknowleged their receipt. I'll be posting the above changes to the existing protocol posted on my webpage at vitaminDwiki.com later this month at the following link, ttp://is.gd/clustervitd. You can download the existing treatment protocol by clicking on the following link. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 . It's interesting to note that since I posted this treatment protocol on 21 Jan, 2017, nearly three years ago, readers of my web page at vitaminDwiki have downloaded 43,387 copies of this treatment protocol... Doing the math, that's an average over 45 downloads a day. I've no idea how many CHers or migraineurs are following this treatment protocol. That said, if the rule of "one out of ten" applies, > 4000 headache sufferers are following this regimen. In closing this epistle to vitamin D3, the other great news is it appears there's going to be a gold standard RCT conducted on this regimen as a CH prophylaxis later this year. When the result of that RCT are published, I'm confident you'll have ample medical evidence to take to your PCP/GP or neurologist. Take care and please keep us posted should you decide to start this regimen. V/R, Batch
  11. Batch

    Upping D3 intake

    Ohayou Geisha, You're on the right track upping the daily maintenance dose to 20,000 IU/day. There are a couple other things to try. The first is to take a 50,000 IU/day loading dose of vitamin D3 for two to three days then drop back to your usual maintenance dose. If you're still experiencing shadows after three days of loading, add another day or two of the50,000 IU/day loading dose. The second thing is switch to the Bio-Tech D3-50 50,000 IU water soluble form of vitamin D3. Many of us have found it to be faster acting with a higher bioequivalence in elevating serum 25(OH)D3 as the same dose of the oil-based liquid softgel vitamin D3 formulations. https://www.amazon.com/Bio-Tech-D3-50-50-000-200/dp/B00IAQUJH0 I buy it from amazon.com. Due to its higher bioequivalence, most CHers, me included, take one D3-50 a week as a maintenance dose. That works out to an average of 7,140 IU/day. If that's not enough to keep the CH symptoms away, decrease the dosing interval to one capsule every 6 days. That said, some CHers, usually the chronic types, need to reduce the dosing interval to one capsule every other day to remain CH pain free. It's a good idea to double the magnesium dose while loading from 400 mg/day up to 800 mg/day split 400 mg with breakfast and 400 mg with the evening meal to prevent osmotic diarrhea. It's best to take these supplements 10 minutes after eating the largest meal of the day. Stomach acid is highest at this point to digest the food you've eaten and this also helps dissolve the supplements for better absorption and less GI tract problems. Take care and please keep us posted. V/R, Batch
  12. Batch

    Are there any D3 Testing kits?

    Grassrootshealth has the 25(OH)D3 blood spot test kits for $65 at the following link: https://daction.grassrootshealth.net/product/vitamin-d-home-test-kit/
  13. Batch

    My vit d blood test

    Hey EyecePick, We know what you've been going through and the good news is it doesn't need to be that way. I sent you a PM with the information about starting the anti-inflammatory regimen. As CH beast has been jumping real ugly making your life miserable, I wouldn't wait for an appointment with your PCP/GP or neurologist if its going to take more than 3 to 4 days. I would pick up the needed supplements and start this regimen as soon as you have them in hand. You can see your PCP/GP or neurologist at any time and explain what you've been taking and why. You should have a copy of the treatment protocol by now so take it along. The following chart illustrates responses by day after starting this regimen. As you can see, half the CHers who start this regimen experience a significant reduction in the frequency of their CH within the first week after starting this regimen from an average of 3 CH/day-24 hrs down to 3 to 4 CH/week. Trust me, sleeping 3 to 4 nights/week CH pain free makes a huge difference. Take care and please keep us posted. V/R, Batch
  14. Batch

    My vit d blood test

    Hey Emmalou, CHfather is spot on saying your 25(OH)D3 serum concentration target is a therapeutic range between 200 nmol/L and 250 nmol/L so the anti-inflammatory regimen is definitely for you as your serum 25(OH)D3 concentration at 86 nmol/L (34.4 ng/mL) is still too low. The following photo illustrates the supplements by brand and dose I take and suggest to other CHers as we've found they have the best response in preventing CHIf you live outside the US you can order most of these supplements through iherb.com when you're ready to reorder. If you live in the US, you can order all of them from amazon.com. If you haven't already done so, you can download a PDF copy of the anti-inflammatory regimen CH preventative treatment protocol at the following VitaminDWiki link: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 The best course of action is to start loading vitamin D3 at 50,000 IU/day for at least 10 to 12 days or until you've experienced 24 hours CH pain free, whichever occurs first. At that point you can reduce your vitamin D3 intake to 10,000 IU/day as an initial maintenance dose. The Bio-Tech D3-50 is important. We've found this 50,000 IU water soluble form of vitamin D3 is faster acting with a higher bioequivalence than the oil-based liquid softgel vitamin D3 formulations in elevating serum 25(OH)D3. I'd suggest ordering it now and take one a day as your loading dose when it arrives. You'll only need one (1) of the D3-50 vitamin D3 capsules a week as your maintenance dose. Be sure to double the magnesium to 800 mg/day split AM/PM with meals while loading. Take all the remaining supplements 10 minutes after eating the largest meal of the day. Stomach acid will be highest at that point to digest the food you've eaten and that helps dissolve the supplements. Be sure to drink at least 2.5 liters of water a day. When you've completed the loading schedule and been on a vitamin D3 maintenance dose of 10,000 IU/day for 30 days, be sure to see your PCP/GP for lab tests of your serum 25(OH)D3, calcium and PTH. As long as your serum calcium remains within its normal reference range, even if it's at the top of this reference range and not over, there's no hypercalcemia, a.k.a., vitamin D3 intoxication/toxicity so your actual 25(OH)D3 serum concentration doesn't really matter except as a reference for being CH pain free. When you have the 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'm not a fan of Amitriptyline primarily due to the fact that tricyclic antidepressants tend to have too many adverse side effects. It's up to you, but I would ditch the Amitriptyline and start a week to 10 day course of a first-generation antihistamine like Benadryl (Diphenhydramine HCL). I would do this anyway if you haven't responded to the loading dose by day 5. Ask your PCP/GP about starting the first-generation antihistamine as depending where you live, Diphenhydramine may not be available, but there are other first-generation antihistamines. Take care and please keep us posted. V/R, Batch
  15. Batch

    Prednisone Not Working

    Jlands, Allergic reactions to CHers are like Kryptonite to Superman. I had a huge allergic reaction to mold spores in June of 2018 that kicked me out of a CH remission that had lasted nearly two years and my 25(OH)D3 was ~140 ng/mL at the time. It took a week of loading vitamin D3 at 50,000 IU/day, extra magnesium and Benadryl (Diphenhydramine HCL) at 25 mg every four hours to stop the CH beast from jumping ugly... I switched to the Bio-Tech D3-50 and did a taper from 50,000 IU/day down to 50,000 IU/week over a two week period. I've been CH pain free ever since. Hope this helps. Take care and please keep us posted. V/R, Batch
  16. Batch

    Prednisone Not Working

    Jlands, What's your latest 25(OH)D3 serum concentration and what's your vitamin D3 dose? I've gotten whacked with mine upwards of 140 ng/mL when hit with an allergic reaction to mold spores. Take care and let us know how the Benadryl (Diphenhydramine HCL) works. V/R, Batch
  17. Batch

    Prednisone Not Working

    Hey Jlands, For starters, you're likely vitamin D3 deficient and that deficiency contributes to the frequency of your CH. We've plenty of data to verify that statement as indicated in the following normal distribution chart of 313 CHer's 25(OH)D3 lab results prior to starting vitamin D3 therapy. 25(OH)D3 is the serum metabolite of vitamin d3 that's used to measure its status. The normal reference range for this lab test is 30 to 100 ng/mL. All of them were experiencing an active bout of CH with an average frequency of 3 CH/day/24 hrs. As you can see from the following chart, 60% of these CHers had a 25(OH)D3 serum concentraton ≤ 30 ng/mL and 100% ≤ 47 ng/mL. Second... you're also likely experiencing an allergic reaction to something in your environment or dietary intake. A week to 10 day course of Bernadryl (Diphenhydramine HCL) at 25 mg every four hours throughout the day should make a difference if I'm correct about an allergic reaction. See the following link for details: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Take care and please keep us posted. V/R, Batch
  18. Hey JenniDawn, Did you get my PM? Check your PM InBox. V/R, Batch
  19. Batch

    Trying to understand my experience

    Hey CSA, Thanks for the reply. While you're looking for a new PCP/GP, I'd restart vitamin D3 therapy. The following photo illustrates the brands and daily doses my wife, the rest of our family and I have been taking for many years. This is also what I suggested in the posted version of this protocol since 2011. It will also be in the updated version of this protocol I hope to have ready for prime time and downloads from VitaminDWiki.com in December. You'll find the "How To" instructions at the following link. Take a copy to your new PCP/GP when you find one. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 The Bio-Tech D3-50 is a recent addition to the anti-inflammatory regimen since July. of 2018. It's a 50,000 IU water soluble form of vitamin D3 that I've found to be faster acting with a higher bioequivalence in elevating serum 25(OH)D3 at the same dose as the oil-based liquid softgel vitamin D3 formulations. It's also more convenient and least expensive. You take one D3-50/day while loading and when the loading schedule is complete, you drop back to an initial maintenance dose of one D3-50/week. At 23 cents per capsule, that works out to a little over 3 cents a day for a an average of 7000 IU/day vitamin D3. The daily cost of the least expensive liquid softgel vitamin D3 is 12 cents/day for 10,000 IU. Most CHers taking the Bio-Tech D3-50 have found the 12-Day loading schedule taking one D3-50 capsule a day for 12 days is sufficient to elevate serum 25(OH)D3 to a therapeutic range that prevents CH. When the loading schedule is complete, one D3-50 a week should be sufficient to maintain the therapeutic 25(OH)D3 serum concentration. In short, I'd get back on that horse and send the CH beast running by restarting this regimen now. When you find a willing PCP/GP, the next set of labs for 25(OH)D3, calcium and PTH should confirm a therapeutic 25(OH)D3 range (80 to 100 ng/mL) with normal calcium and PTH in the lower third of its normal reference range. Don't forget to get your daughter on vitamin D3 at 50 IU per pound of body weight/day along with calcium chews. At 2 to 3 years the average weight is around 30 lbs so that works out to 1500 IU/day vitamin D3 or 10,000 IU/week. I'd pick up some Bio-Tech D3Plus. This is an ideal vitamin D3 formulation for kids as it contains the essential vitamin D3 cofactors all in one capsule. It just needs calcium and phosphorus, the two primary building blocks needed to build strong growing bones. https://www.amazon.com/D3Plus-Vegetable-Capsules-Bio-Tech-Pharmacal/dp/B0085F3K2C/ref=sr_1_10?keywords=Bio-Tech+D3&qid=1574813439&s=hpc&sr=1-10 The dose for a 2 to 3 year old with the D3Plus is one capsule every other day (48 hours) for an average of 1250 IU/day vitamin D3. The calcium gummy my grand kids take comes from Vitafusion. It's formulated with tricalcium phosphate. https://www.amazon.com/Vitafusion-Calcium-Gummy-Vitamins-100ct/dp/B003DRD3PG/ref=sr_1_4?keywords=Calcium+Gummies&qid=1574851736&s=hpc&sr=1-4 One of these a day is great for 2 and 3 year olds. Take care and please keep us posted. V/R, Batch
  20. Batch

    Trying to understand my experience

    Hey CSA, We're not doctors so don't diagnose, treat or prescribe. That said, from our collective experience, we know what you've apparently been going through. What we can do is provide you with information you can take to your PA friend and his PCP/GP, your headache specialist and neurologist should you get a referral. From my experience providing information to hundreds of CHers over the last 8 years on the benefits of vitamin D3 and its cofactors in preventing CH, you're likely vitamin D3 deficient. That deficiency is contributing to the frequency (albeit low at this point), severity and duration of your headaches. A suggested course of action for you is to see your PA friend and his PCP/GP for a lab test of your serum 25-Hydroxy Vitamin D3, a.k.a., 25(OH)D3. 25(OH)D3 is the serum level metabolite of vitamin D3 that's used to measure its status. The normal reference range for the 25(OH)D3 lab test is 30 to 100 ng/mL. As you're experiencing headaches that appear to be CH and you've had a CT with no abnormalities, if your 25(OH)D3 lab results come back ≤ 30 ng/mL, download a copy of the anti-inflammatory regimen CH preventative treatment protocol at the following link and discuss it with your PA friend and PCP/GP. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 There's some good medical evidence behind this suggestion. I've been running an online survey of CHers taking the anti-inflammatory regimen to prevent their CH since 16 December, 2011. As of June of this year, 313 CHers have taken this survey. Better than 80% of these CHers experienced a significant reduction in the frequency of their CH in the first 30 days after starting this regimen. 50% of these CHers experienced a lasting cessation of CH symptoms in the first 30 days. The following normal distribution curve illustrates their 25(OH)D3 serum concentrations measured before they started the above treatment protocol while in active CH bouts experiencing an average of 3 CH/day/24 hours. I'd also like to point out that this regimen is very safe. It's so safe, I've had my entire family and close friends taking it since 2011 and none of them have CH. That also includes three grand babies who were bathed in maternal vitamin D3 from conception through breast feeding as their mothers, my daughter and niece, took 10,000 IU/day vitamin D3 plus the vitamin D3 cofactors throughout their pregnancies and while breast feeding. Their pregnancies and deliveries were flawless. These three grand babies are very healthy with phenomenal rates of physical and mental development. When they were done breastfeeding they've taken vitamin D3 at 50 IU per pound of body weight per day. They have T-Rex immune systems so never get sick. My grand daughter Fred, a.k.a., Winefred, is a vitamin D3 poster child. Fred was speaking Hochdeutsch at age 2 and attended pre-kindergarten in Heidelberg, Germany last year at age 4 where only German was spoken. Little brother Orrin, is 2 and also bi-lingual. Take care and please keep us posted. V/R, Batch
  21. Hey Alikhan, Oxygen therapy with hyperventilation can be effective aborting both cluster and migraine headaches. If you haven't tried it, the anti-inflammatory regimen with 10,000 IU/day vitamin D3 plus the cofactors has a proven track record preventing cluster and migraine headaches. You can download a copy of this treatment protocol at the following vitaminDwiki link: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Take care and please keep us posted. V/R, Batch
  22. Batch

    Demand Valve O2

    Trent, I haven't used my oxygen kit since I developed and started taking the anti-inflammatory regimen on 10 October of 2010 except for demonstrations. The aluminum M60, Flotec Inc InGage® 0-60 lpm regulator with DISS fitting and Carnét oxygen demand valve sit unused under a plastic bag in the laundry room. There's still over 1000 psi left in the M-Size welder's cylinder in the garage I picked up in August 2010. We live out in the woods with plenty of logging equipment so I actually do some oxy-acetylene cutting and welding. There's no question that an oxygen demand valve system makes for rapid, reliable and very simple CH aborts. That said, it is only an abortive. Since starting the anti-inflammatory regimen in October of 2010, I've found life a lot more enjoyable waking up in the morning after a night of CH pain free sleep. I can even take combat naps thanks to the vitamin D3... Take care and please keep us posted. V/R, Batch
  23. Batch

    Demand Valve O2

    Hey Trent, I'm impressed... A life time ban from E-bay... Wow! Welcome to the club... I received a life time band from Facebook for suggesting 10,000 IU/day vitamin D3 plus the vitamin D3 cofactors was an effective preventative for migraine headache. Given you've invested in more than sufficient numbers of M-Size and E-Size oxygen cylinders, I'd suggest a very cost effective alternative to an oxygen demand valve and regulator with DISS fittings. It's called the Redneck Oxygen Reservoir Bag. I made the first one from a new kitchen trash bag, a plastic soda bottle with the bottom cut off (keep the cap), oxygen tubing cut off of a disposable NRB oxygen mask at the mask end, some Duck Tape and electrician's tape. I cut the corners off the closed end of the trash bag as illustrated above, insert the oxygen tubing in one corner and the soda body through the other corner from inside the trash bag and seal both with electrician's tape for a gas tight seal then close the open end of the trash bag with a few strips of Duck tape you'll have a very effective oxygen delivery system that only needs a 7 to 9 liter/minute oxygen regulator if you fill ahead of time and turn off the oxygen at the supply valve. If you've taped the seams properly, the Redneck reservoir bag should stay inflated for at least 24 hours unused. The soda bottle becomes your handle and mouthpiece for inhaling 100% oxygen. I've found a fully inflated kitchen trash bag is good for three aborts using the following procedure and breathing technique. The procedure I suggest involves hyperventilating at forced vital capacity tidal volumes with room air for 30 seconds followed by inhaling a lungful of oxygen from the Redneck reservoir bag and holding it for 30 seconds. You continue repeating this sequence in rapid succession until the pain is gone. That usually takes an average of seven complete cycles or 7 minutes. You remove the bottle cap inhale the lungful of oxygen then replace the bottle cap. The purpose of intentionally hyperventilating at forced vital capacity tidal volumes is to pump CO2 from the blood stream faster than the body generates it from normal metabolism. This lowers the CO2 content of the arterial blood shifting the pH to the alkaline side of neutral (7.35 to 7.45) to a pH around 7.5 to 7.6 resulting in a temporary condition called respiratory alkalosis. This does two things that help abort CH much faster. A low arterial CO2 level and elevated arterial pH triggers a rapid vasoconstriction in and around the trigeminovascular complex. The elevated pH also increases blood hemoglobin's affinity for oxygen enabling it to carry 15% more oxygen sending hyperoxygenated arterial blood to the brain. Oxygen triggers vasoconstriction in the trigeminovascular complex. Hyperoxygenated arterial blood triggers vasoconstriction in an around the trigeminovascular complex even faster. The net result is very rapid and very effective CH aborts like 99% effective in an average of 7 minutes across pain levels 3 though 9 on the 10-Point headache pain scale. Hyperventilating at forced vital capacity tidal volumes involves exhaling forcibly and rapidly until if feels like your lungs are empty... they're not. At that point without delay, do an abdominal crunch like doing sit ups and hold the crunch for one second or until your exhaled breath makes a wheezing sound then inhale a lungful of room air and repeat the above sequence. You should be doing around 10 of these cycles in 30 seconds. On the 10th exhalation, hold the crunch/squeeze for 3 seconds. This will squeeze out an additional half to full liter of exhaled breath highest in CO2 As the guy who patented the oxygen demand valve method of rapid CH aborts in 2010, I've found the Redneck reservoir bag and the above procedures just as effective and fast as the far more expensive oxygen demand valve system and I bought the Cadillac of oxygen demand valves, the Carmét along with a Flowtec Inc, 0-60 lpm, InGage regulator with DISS fitting plus an M60 aluminum cylinder as my roadie along with a pigtail filler nfor a total cost of ~ $2100 USD in 2008. In 2008, I conducted a pilot study of the oxygen demand valve method of aborting CH using the same breathing technique above with seven CHers (1 ECHer and 7 CCHers). They each aborted their CH with this method of procedure for 8 weeks collecting pain level and abort times for each abort. All total, they collected this data on 366 aborts. Their average abort time was 7 minutes and over 99% of the aborts came in at ≤ 20 minutes. The following chart illustrates these results. As you can see, the oxygen demand valve method of procedure produced aborts 3 to 4 times faster than traditional oxygen therapy at a flow rate of 15 liters/minute. Now here's the payoff... The Redneck Reservoir bag method of aborting CH is just as effective in aborting CH as the oxygen demand valve method. If you'll look at the photo of my oxygen kit you'll see a sticker on the oxygen cylinder with check marks indicating 30 aborts, the average number of aborts I obtained with an M-Size Oxygen or Welder's cylinder with the oxygen demand valve. As the copay for each M-Size oxygen cylinder was $30 USD, that works out to $1/CH abort. I got nearly 300 aborts from an M-Size welder's cylinder using the Redneck Reservoir bag method so that makes the cost per abort roughly 10 cents USD. All that said, I developed the anti-inflammatory regimen CH preventative treatment protocol with 10,000 IU/day vitamin D3, Omega-3 Fish Oil and the vitamin D3 cofactors, magnesium, zinc, boron and vitamin A (retinol) in October of 2010. I was CH pain free following the second dose of this regimen. I've been CH pain free ever since. You can find the anti-inflammatory regimen CH preventative treatment protocol at the following link. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Take care and please keep us posted. V/R, Batch
  24. Batch

    New to the group - some observations

    Hey Signals, Welcome to Clusterbusters. We know what you've been going through so you've come to the right place. Regarding travel and taking the vitamin D3 regimen, I pack a ziplock bag with enough vitamin D3 and cofactors to last the duration of my travels plus enough for a few more days in case of delays and keep it in my carry on bag. In the 8 + years since I developed this regimen, I've never had any problems with TSA or customs during international travel. I switched to the Bio-Tech D3-50 water soluble 50,000 IU vitamin D3 capsules. They make the loading schedule a snap at one capsule a day. I've been taking one D3-50 a week as my maintenance dose and this has been adequate to kept me CH pain free. At one D3-50 a week the daily cost is ~3 cents/day where the oil-based liquid softgels cost 6 cents per 5000 IU or 12 cents/day. Check your PM InBox, I've sent some additional info. Take care and please keep us posted. V/R, Batch
  25. Into Light, Gotcha... PM on the way to Spikeinthehead. V/R, Batch
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