Cluster Dave Posted August 20, 2020 Share Posted August 20, 2020 50 minutes ago, FunTimes said: Verapamil can help some. I was at one point taking a little over 900 mg a day with the slow release. I made the change over to the rapid release and worked my way down to 120 twice a day. You will want to have a doc keep an eye on your heart when changing dose and work up slowly. It will take about a week to get into your system so most will do a pred taper for the first week. When I was on the higher dose it effected the feeling in my feet along with a little swelling. If you are also using the D3 with all co factors you will want to space them apart a few hours, Verap is a calcium channel blocker so they would be fighting each other. They both work fine along with the triptans also. Thanks FunTimes - wondering now if just ramping up on the D3 regime might be enough while on the one week pred ? Dave Quote Link to comment Share on other sites More sharing options...
spiny Posted August 20, 2020 Share Posted August 20, 2020 FunTimes covered a lot of it Dave. You don't change the Verap that fast. Stay on your beginning dose for now. You do want the short acting, not the extended release version. Works much better for most of us. If it says 'EX' or 'ER' and take twice a day, that is extended. Ask for a change. D3: Doing the loading dose! It will help. K2 is available on Amazon. Your Pred, likely will get you pain free quickly. As you taper down that 50mg, you might get a return of your hits. Hopefully you can avoid that with the D3 and Verap. ATB! Quote Link to comment Share on other sites More sharing options...
Cluster Dave Posted August 21, 2020 Share Posted August 21, 2020 2 hours ago, spiny said: Hi Spiny - somewhere there was a mix up. I am not on Verap and have never been. I was just asking if it might be a good idea to ramp up on it while starting another 7 day round of prednisone? Or just stick with ramping up on the D3 during the 7 day prednisone? Feeling over medicated now Thanks Dave Quote Link to comment Share on other sites More sharing options...
spiny Posted August 21, 2020 Share Posted August 21, 2020 The Pred is used to bridge - it stops the hits while the Verap builds up in your system. I am confused. If you have not been taking it, how would you 'ramp it up'? Yes, you should be taking it while on the Pred. The Pred buys you some Pain Free time while the Verap. builds up in your system to a therapeutic level. The idea is to take the Verap while taking the Pred and when you stop the Pred, the Verap has you CH under control. Does that make sense? You can't stay on Pred due to the joint damage it causes. So, you are not taking Verap now, but do you have a script for it? As for the D3. 50,000 is a 'loading' dose, to be taken once, not daily. Your daily dose will be less. That loading dose builds the D up faster when you are deficient. The daily dose will be around 10k, not 50k. Doing the loading dose while on the Pred and beginning the D3 also can improve your chances of getting PF in a shorter time. So yes, do together, not one after the other. Quote Link to comment Share on other sites More sharing options...
SECAuthentics Posted August 21, 2020 Author Share Posted August 21, 2020 On 8/16/2020 at 12:37 AM, xxx said: Hey SECAuthentics, All of us on the anti-inflammatory regimen experience burnthrough CH at one time or another. The solution is simple. If you haven't switched to the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 now is a good time to do so. You can order it from amazon or iherb. In the mean time most CHers in your shoes, me included, have loaded vitamin D3 at 50,000 IU/day for a week then droped back to the usual maintenance dose. When you switch to the Bio-Tech D3-50, one capsule a week is a good starting maintenance dose. I updated the basic regimen in July of 2018 adding the Bio-Tech D3-50 in place of the oil-based liquid softgel vitamin D3 formulation. In Jan of 2019, I added Methyl Folate + in place of the generic vitamin B 50/100 complex. The following photo illustrates the latest version of this regimen by brand and dose. CHers who stick with the above brands tend to experience a faster rate of response to this regimen. Take care and please keep us posted. V/R, Batch Thanks Batch. I have been on those new D3-50 for about 3 weeks now. Yesterday was my 3rd day in a row without a headache....which has not happened since this new cycle began so hopefully I am turning the corner. 1 Quote Link to comment Share on other sites More sharing options...
Cluster Dave Posted August 21, 2020 Share Posted August 21, 2020 6 hours ago, spiny said: The Pred is used to bridge - it stops the hits while the Verap builds up in your system. I am confused. If you have not been taking it, how would you 'ramp it up'? Yes, you should be taking it while on the Pred. The Pred buys you some Pain Free time while the Verap. builds up in your system to a therapeutic level. The idea is to take the Verap while taking the Pred and when you stop the Pred, the Verap has you CH under control. Does that make sense? You can't stay on Pred due to the joint damage it causes. So, you are not taking Verap now, but do you have a script for it? As for the D3. 50,000 is a 'loading' dose, to be taken once, not daily. Your daily dose will be less. That loading dose builds the D up faster when you are deficient. The daily dose will be around 10k, not 50k. Doing the loading dose while on the Pred and beginning the D3 also can improve your chances of getting PF in a shorter time. So yes, do together, not one after the other. Thanks Spiny - I think the confusion came with my terminology. I used the term ramping up and I meant that for ramping up on the D3 regime and the 50,000 IU daily for one week. Then back down to 10,000 IU daily. In the same post I was asking about verapamil since I have never tried it and thought since I will be on pred for a week might be a good time to try it. Yesterday and all night was bad. Started the prednisone at noon with 50mg. Had a headache for 22 hours. Prednisone headache with cluster headache and TGN pain poking through hourly. O2 took care of the cluster/TGN but the prednisone medication headache was continuous for 22 hours. Not sure whether or not to continue with the prednisone? Thanks Dave Quote Link to comment Share on other sites More sharing options...
Cluster Dave Posted August 21, 2020 Share Posted August 21, 2020 3 hours ago, SECAuthentics said: Thanks Batch. I have been on those new D3-50 for about 3 weeks now. Yesterday was my 3rd day in a row without a headache....which has not happened since this new cycle began so hopefully I am turning the Thanks SECauthentics - that is the link and image I took to the pharmacy and was following. D3 - 50,000 to be taken daily for one week to ramp up. Then back down to either 50,000 per week or 10,000 per day. Dave Quote Link to comment Share on other sites More sharing options...
spiny Posted August 21, 2020 Share Posted August 21, 2020 Wow!! A headache from the Prednisone? That shocks and sucks too!! Are you taking several pills per day, or one 50mg pill? Quote Link to comment Share on other sites More sharing options...
Cluster Dave Posted August 21, 2020 Share Posted August 21, 2020 13 minutes ago, spiny said: Wow!! A headache from the Prednisone? That shocks and sucks too!! Are you taking several pills per day, or one 50mg pill? Took 1 tablet 50mg headache started about an hour after and lasted 22 hours with cluster attacks on top of the medication headache. That was the day one of the seven day prednisone treatment but I am afraid to take the day 2 tablet. Maybe wait a day or two before starting. Would rather just have the cluster headache than both. Maybe need a day or two to cleans my system. Thanks Dave Quote Link to comment Share on other sites More sharing options...
Cluster Dave Posted August 21, 2020 Share Posted August 21, 2020 Surprised me too. The good part is this morning as the prednisone is wearing off the medication headache and the cluster headaches have been good. Not expecting that to last long but I am getting a 4 hour break that I have not had for a long time. Wondering if the Imitrex that I took the night before (2 doses) I had anything to do with it. I started the prednisone the next day ? Quote Link to comment Share on other sites More sharing options...
xxx Posted August 21, 2020 Share Posted August 21, 2020 For what it's worth, here's the logic and science behind the 12-Day accelerated vitamin D3 loading schedule and why the initial target 25(OH)D3 serum concentration is 80 ng/mL. 1. From the online survey data of 313 CHers who have reported their results after starting this regimen since Dec 2011, we have the normal distribution chart of baseline 25(OH)D3 lab results before starting this regimen and normal distribution chart of the objective (Favorable CH Response) 25(OH)D3 labs after ≥30 days on this regimen. As you can see, CHers reporting in this survey with active CH, went from a mean 25(OH)D3 serum concentration of 24 ng/mL before starting the anti-inflammatory regimen to a mean of 80 ng/mL after ≥ 30 days on this regimen with a significant reduction in the frequency of thier CH. The following chart illustrates the notional change in serum 25(OH)D3 made possible by starting this regimen with the 12-Day accelerated vitamin D3 loading schedule. Data from the online survey confirms the above notional response. As you can see, if the CHer took only 10,000 IU/day vitamin D3 and no loading, it could take well over 2 months to reach a mean 25(OH)D3 serum concentration of 80 ng/mL. The following charts illustrate the favorable CH response to this regimen by day after starting it. The first chart illustrates favorable responses by day after starting this regimen. I used a favorable response as at least a 50% reduction in CH frequency by at least 70% of participants. Data from the survey indicate the mean reduction in CH frequency is 80% by 82% of participants. This second cart illustrates days after start of regimen to a sustained complete cessation of CH symptoms. Survey data collected during 2019 indicate the favorable response rate increased with over 90% of CHers reporting a favorable response. I attribute most of this increase in the response rate to the switch to Bio-Tech D3-50. 2. Why is the initial 25(OH)D3 serum concentration target set at 80 ng/mL? This is where a little statistics and what's called the confidence interval comes into play. In statistics, a confidence interval is a type of interval estimate, computed from the statistics of the observed data, that might contain the true value of an unknown population parameter. Data in the following chart comes from the D* Action database at Grassrootshealth. It represents the results of 25(OH)D3 lab tests from over 10,000 people who take the 25(OH)D3 home blood spot test for their serum 25(OH)D3 every six months reporting their vitamin D3 dose over the six months prior to this lab test. As you can see, the mean 25(OH)D3 response to various vitamin D3 doses is represented by the blue lines and that at a dose of 10,000 IU/day, the mean 25(OH)D3 response is 76 ng/mL. The red lines represent the 95% confidence interval. In simple terms we can say that the results a given lab test for 25(OH)D3 at a dose of 10,000 IU/day will fall between these two red lines with 95% confidence. The green dashed lines represent 25(OH)D3 serum concentrations at 40 ng/mL, 30 ng/mL and 20 ng/mL. Accordingly we can say that at a dose of 10,000 IU/day the confidence interval for 25(OH)D3 response lies between 42 ng/mL and 118 ng/mL with 95% confidence. If you go back to the second chart illustrating the normal distribution of 25(OH)D3 results among CHers responding to this regimen with a significant reduction in the frequency of their CH, you can see this same confidence interval falls under the normal distribution curve. For practical purposes, this is also the effective therapeutic range of serum 25(OH)D3 (40 ng/mL to 120 ng/mL) for favorable responses. You can also see where a lower vitamin D3 dose of 5,000 IU/day results in a confidence interval between 25 ng/mL and 90 ng/mL. In this case a significant number of CHers would not respond to this regimen. As an "Oh by the way..." the following charts from two different COVID-19 studies indicate taking 10,000 IU/day and keeping your 25(OH)D3 serum concentration over 40 ng/mL is a pretty good idea... This isn't rocket science and you don't need to be a physician to understand the importance of this information. Hope this helps explain a little more about the anti-inflammatory regimen treatment protocol. Take care, V/R, Batch 1 Quote Link to comment Share on other sites More sharing options...
Cluster Dave Posted August 21, 2020 Share Posted August 21, 2020 Wow thanks so much. Dave Quote Link to comment Share on other sites More sharing options...
spiny Posted August 22, 2020 Share Posted August 22, 2020 Batch, off topic a bit, but I have a question. Why the Pepcid for COVID? I understand it helps, but not why. Any idea? Thanks! Quote Link to comment Share on other sites More sharing options...
Cluster Dave Posted August 23, 2020 Share Posted August 23, 2020 Last night I had a headache with extreme facial and trigeminal nerve pain that lasted for hours. Normally my cluster headaches last 40 minutes from start to finish then I get a break until the next on hits. Not this time though. Had to do 2 rounds of O2 before any relief where as usually 1 round of 10 minutes will provide relief. Has anyone heard of a cluster headache lasting hours, I haven't so there is more to this cycle, has anyone else come across headaches that last hours and if so what was the cause ? Thanks Dave Quote Link to comment Share on other sites More sharing options...
jon019 Posted August 23, 2020 Share Posted August 23, 2020 56 minutes ago, Cluster Dave said: Has anyone heard of a cluster headache lasting hours, I haven't so there is more to this cycle, has anyone else come across headaches that last hours and if so what was the cause ? .........yes, fortunately rarely.....check your triggers.....several 6-8 hr bangers from anesthesia/alcohol for me.... Quote Link to comment Share on other sites More sharing options...
xxx Posted August 24, 2020 Share Posted August 24, 2020 (edited) Jon, Er... Make that Spiny, (Forgot my cheaters) Regarding Pepcid (famotidine), it's a histamine H1 blocker and there have been two completed studies taking it during a COVID-19 infection listed in clinicaltrials.gov. The first was based on a questionnaire sent to COVID-19 outpatients who took it during a COVID-19 infection. The second study involved a Therapeutic Plasma Eexchange as a treatment for COVID-19. The protocol called for supportive treatment that included Vitamin C, Zinc, Vitamin D, Famotidine, Enoxaparin and Methylprednisolone so Prpcid wasn't the only intervention. Neither have been through peer review. There was a reduction in mortality among COVID-19 patients who had taken Pepcid (famotidine). Take care, V/R, Batch Edited August 24, 2020 by xxx 1 Quote Link to comment Share on other sites More sharing options...
devonrex Posted August 24, 2020 Share Posted August 24, 2020 My regular duration is 2.5 hrs. 15 minutes to 1.5 hr break then back in to one, then sleep when they are in the low end of my daily rotation. Quote Link to comment Share on other sites More sharing options...
spiny Posted August 24, 2020 Share Posted August 24, 2020 In an 'untreated' cycle, my hits are two hours, fifteen minutes. I get fifteen miuntes break and off to the next one - same 2 hours and fifteen minutes. So, that makes four hits per night, ending about 6am and I sleep from 6 to 8am. Kinda rough. Batch: Thank you!! A friend used the D3, Pepcid, and Zinc for COVID. I had missed the Pepcid part, but evidently it is safe even at high daily doses. Nice to know! Quote Link to comment Share on other sites More sharing options...
Cluster Dave Posted August 24, 2020 Share Posted August 24, 2020 Wow Spiny and devonrex are you both chronic or episodic ? I took Almotriptan for the beast and Tegrotol for the TGN pain last night and it bought me a straight 4 hours of sleep. I am on my last week of vacation time before I head back to work so I have to get a handle on these, going to call the physician for Varapamil. At least get the prescription and have it on standby. Full on with the D3 regime with Batch, he has been fantastic in helping me. Hoping it helps before I have to try Varapamil and the dreaded prednisone. Dave Quote Link to comment Share on other sites More sharing options...
Cluster Dave Posted August 24, 2020 Share Posted August 24, 2020 Has anyone ramped up on Verapamil and Triptans as opposed to Verapamil and Prednisone ? Thanks Dave Quote Link to comment Share on other sites More sharing options...
xxx Posted August 24, 2020 Share Posted August 24, 2020 Spiny, As I indicated in an earlier post in this thread, Pepcid (Famotidine) is a histamine H2 receptor blocker. There's evidence Quercetin is a little safer and more effective as an antiviral than Famotidine. That said, the COVID-19 Critical Care Working Group (FLCCC) treatment protocol for COVID-19 patients in the ER calls for intravenous methylprednisone, high-dose ascorbic acid (vitamin C), thiamine (Vitamin B1) and heparin. Optional additions include melatonin, zinc, vitamin D3, atorvastatin, famotidine and magnesium. Quercetin also acts as an ionophore transporting zinc ions across cell walls to help stop viral replication. Vitamin C and quercetin have synergistic effects that make them useful in the prevention and early at-home treatment of COVID-19. Both are part of the MATH+ protocol developed by the Front Line COVID-19 Critical Care Working Group (FLCCC). For COVID-19 prophylaxis, the FLCCC recommends vitamin C, quercetin, zinc, melatonin and vitamin D3 The at-home treatment for mildly symptomatic patients is very similar to the prophylactic regimen, but adds several optional drugs, including aspirin, famotidine (an antacid) and ivermectin (a heartworm medication that has been shown to inhibit SARS-CoV-2 replication in vitro) There are two distinct phases or stages of COVID-19 — the viral replication stage and the immune dysfunction stage — and the treatment must be appropriate for the stage you’re in. Equally crucial is starting aggressive treatment as early as possible. Vitamin D3 boosts immune system functions that help prevent viral infections. Vitamin D3 at a high enough dose and responding 25(OH)D3 serum concentration, also helps prevent immune system dysfunction Quercetin was initially found to provide broad-spectrum protection against SARS coronavirus in the aftermath of the SARS epidemic that broke out across 26 countries in 2003. Now, some doctors are advocating its use against SARS-CoV-2, in combination with vitamin C, noting that the two have synergistic effects. Incidentally, ascorbic acid (vitamin C) and the bioflavonoid quercetin (originally labeled vitamin P) were both discovered by the same scientist — Nobel prize winner Albert Szent-Györgyi. Quercetin’s antiviral capacity has been attributed to five main mechanisms of action: Inhibiting the virus’ ability to infect cells by transporting zinc across cellular membranes Inhibiting replication of already infected cells Reducing infected cells’ resistance to treatment with antiviral medication Inhibiting platelet aggregation — and many COVID-19 patients suffer abnormal blood clotting Promoting SIRT2, thereby inhibiting the NLRP3 inflammasome assembly involved with COVID-19 infection Similarly, vitamin C at extremely high doses also acts as an antiviral drug, effectively inactivating viruses. During the 2003 SARS pandemic, a Finnish researcher called for an investigation into the use of vitamin C after research showed it not only protected broiler chicks against avian coronavirus, but also cut the duration and severity of common cold in humans and significantly lowered susceptibility to pneumonia. I compiled a list of immune boosting COVID-19 prophylaxis people can take at home in the following table provided by experts in nutritional medicine. Column 4 is my summation. Supplement Riordan Orthomolecular EVMS/FLCC Batcheller Vitamin C 1-2g t.i.d. 3 g/d (1g t.i.d.) 500 mg BID 3 g/d (1g t.i.d.) Vitamin D3 5,000 IU/d 10K IU/d for 2 wk* 1000-4000 IU/d 50,000 IU/wk** Vitamin A 10,000 IU/d 3,000-6000 IU/d Vitamin B1 25 mg/d Zinc Picolinate 30 mg BID 30 mg/d 75-100 mg/d 50 mg/d Quercetin 500 mg/d 250-500 mg BID 400 mg BID Selenium 200 mcg/d 200 mcg/d 55 mcg/d Magnesium 500 mg/d 400-800 mg/d Melatonin 1-5mg/d 0.3-2.0 mg/d Omega-3 PUFAs 1500 mg/d Multi Vitamin 1 Tablet/d 1 Tablet/d *** * 10,000 IU/day vitamin D3 for 2 weeks then drop back to 5000 IU/day ** 50,000 IU/day vitamin D3 for 12 days then drop back to 50,000 IU/week. Water soluble vitamin D3 suggested such as Bio-Tech D3-50 as it has a higher bioequivalence than the oil-based liquid softgel vitamin D3 formulations. *** The Kirkland Adult 50+ Mature Multi is an excellent source of vitamin D3 cofactors. It just doesn't have enough magnesium or any vitamin K2 Of course you won't hear anything about this from HHS, the good Dr. Fauci at NIH, the FDA or CDC. They're heavily influenced by the Big Pharmas who don't want people to know how effective vitamins and minerals can be in treating viral infections. Members of these organizations are also heavily invested in vaccine development (at tax payer expense) so don't want the public to hear about any competitive treatments that are more effective, safer and less expensive. Take care, V/R, Batch 1 Quote Link to comment Share on other sites More sharing options...
xxx Posted August 24, 2020 Share Posted August 24, 2020 (edited) There's an excellent video of Dr. Paul Marik, MD, Chief of Pulmonary and Critical Care Medicine, Eastern Virginia Medical School, Norfolk, VA, explaining his MATH+ COVID-19 protocol at the following link. It's long, but well worth the time. https://www.youtube.com/watch?v=xZJixjgu3tk I've been exchanging email with Dr. Marik for the last 5 months. There's an excellent analysis of the MATH+ protocol at the following link. https://covid19criticalcare.com/math-hospital-treatment/scientific-review-of-covid-19-and-math-plus/#1596274217294-29a4f4e2-63ce Take care, V/R, Batch Edited August 24, 2020 by xxx 1 Quote Link to comment Share on other sites More sharing options...
spiny Posted August 24, 2020 Share Posted August 24, 2020 Many thanks Batch. That should cover it for me! Dave: I am Episodic. My cycles begin on the Fall Equinox and end on the Spring Eqininox. Unless something jumps in to add to that. So, I suppose that means about have my life if untreated. Before you ask, what kept me going was family and the holidays when I would get to see my kids and grands. Looked pretty rough, but I was there to enjoy!! Fortunately, being here has shown me the way to get PF and stay that way most of the time. I do have break through's caused by barometric pressure drops, surgery, illness. That sort of thing still comes through on occasion. But no cycles for a while now. There is hope and help here. Peace! 1 Quote Link to comment Share on other sites More sharing options...
Cluster Dave Posted August 24, 2020 Share Posted August 24, 2020 What is keeping you PF, mm's ? Thanks Dave Quote Link to comment Share on other sites More sharing options...
spiny Posted August 25, 2020 Share Posted August 25, 2020 And the D3 Regimen! MM is not needed as often with the D3. In addition, making sure that I am not given Epinephrine for dental or surgical procedures. Avoid booze when I get a shadow, staying home when a pressure front is moving in and lowering the barometric pressure. I live on a mountain, so going down is fine, but returning will precipitate a hit anytime after September 21st or so. So, I do take other precautions so that I do not set myself up for a hit. Everything helps to some degree. But the most effective would be MM and D3. I have not had a full cycle in years now. Life is good. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.