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Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Batch regimen recently stopped working - help http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1494208018 Message started by JT08 on May 7th, 2017 at 9:46pm |
Title: Batch regimen recently stopped working - help Post by JT08 on May 7th, 2017 at 9:46pm
Hello,
I'm new here but have been following and using Batch's regimen for several years now. It has worked wonders for my cluster headaches, and has allowed me to go several months at a time with absolutely no pain. In the past 3 weeks, I've felt the onset of an attack... frequent twinges in back of my head, neck, behind my eye, and any sip of alcohol throws me into a terrible headache (some of the worst I've ever had). Not even my Sumatriptan prescription can knock it out, and that's usually successful for me. Just did a week long dose of Prednisone and haven't noticed much difference. I'm pretty desperate as I'm getting married in 3.5 weeks and really hope I can get these under control before then. I've been taking the following on a daily basis for several years now with success - I noted the recent adjustments in parentheses. -Daily multivitamin -20,000 -- 25,000 IU Vitamin D3 (bumped it up to 50,000 the past 9 or so days). -1000 MG Omega-3 Fish Oil (recently bumped up to 2500 MG) -(added Vitamin A 1000 IU just this week) I've been taking CLA pills as a supplement for weight loss recently -- about the past 6 weeks. No clue if this has had any effect on my headaches but want to mention it. I'm going to stop taking it immediately. I haven't taken Magnesium in the past as even the tiniest bit upsets my stomach badly, but I ordered Magnesium Glycinate (150 MG pills) to add to the routine ASAP. Hopefully this type is easier on my stomach. Any comments or insight are welcomed and appreciated. Hoping I can figure this out very quickly. Thank you in advance! |
Title: Re: Batch regimen recently stopped working - help Post by Chuffy on May 8th, 2017 at 8:35am
I'm sure Batch will be along in a minute but in the meantime that's quite a big ongoing daily dose :o I know everyone's different but I only take 5,000iu a day??
Are you also taking the Multi and and the K2? |
Title: Re: Batch regimen recently stopped working - help Post by JT08 on May 8th, 2017 at 1:39pm
Thanks for the reply. I try to lower that ongoing D3 dose as much as I can without getting a headache... so sometimes I'll drop it to 10,000 IU/day and go as long as possible before bumping it back up. I notice when I drop below certain thresholds during a cycle of headaches, I will immediately notice the headache pre-cursors coming back.
I'm taking a Daily multivitamin which I believe has K2 in it. |
Title: Re: Batch regimen recently stopped working - help Post by MDR on May 8th, 2017 at 4:10pm
JT08,
I talked to Batch a few days ago he told me that the pollen count is making my head aches worse he told me add childrens allergy liquid to my regament and it really has helped. Mark. |
Title: Re: Batch regimen recently stopped working - help Post by pattik on May 9th, 2017 at 10:02am
First of all, congrats on your upcoming wedding. The previous posters brought up some good points, including the allergy issues. Even sub-clinical allergies can consume your D3, and Batch has suggested many times that taking Benedryl or it's generic equivalent might help. I can't take it during the day, since it knocks me out, but you might try taking 50 mg at bedtime. Also, you should eventually start taking the vitamin K2 Batch includes in the regimen--MK7 or the K2 combo he likes isn't needed for the CH, but it is protective from the high D3 doses. The calcium freed up can run amok without it. I'm hoping you will find magnesium you can tolerate. You've picked a good one. Try splitting the dose into 2-3 times a day always with food--easier on the digestive system. I actually rotate between types or mix them. When I start to lose tolerance, I switch. When you are doing the large loading dose, be sure to increase the magnesium a little too. Like you, I have been able to get by with sumatriptan tabs since being on this regimen. So, good luck,and best wishes on your marriage!
Patti |
Title: Re: Batch regimen recently stopped working - help Post by JT08 on May 9th, 2017 at 1:49pm
Thank you all for your responses. I started taking Claritin Children's Liquid Allergy medicine last night and this morning. Is this the right stuff or do I need Benadryl brand?
Magnesium being delivered today so I'll start that ASAP. Thanks again |
Title: Re: Batch regimen recently stopped working - help Post by MDR on May 9th, 2017 at 1:52pm
what your taking should be fine
Mark |
Title: Re: Batch regimen recently stopped working - help Post by JT08 on May 11th, 2017 at 10:24pm
I've been taking Benadryl (Diphenhydramine) past two nights and have felt some relief, although it makes me really groggy next day.
I also have the Claritin Children's Liquid Allergy Non-Drowsy, which is also an antihistamine but w/ ingredient Loratadine. Wouldn't they do the same thing even if different ingredient -- fight off allergies which are depleting D3? I prefer to take the Claritin Non Drowsy but want to make sure this stuff has same before eliminating the Benadryl. Thank you |
Title: Re: Batch regimen recently stopped working - help Post by Gypsystormshadow on May 12th, 2017 at 4:38am
I'm starting the regime today as the CH's returned 2 nights ago after a 9 year break. I'm watching this post with keen interest, so thanks for all the information beautiful people.
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Title: Re: Batch regimen recently stopped working - help Post by Batch on May 12th, 2017 at 9:15am
Hey JT08,
Drowsiness is the price we pay with Diphenhydramine HCL so do not drive while taking it... You can take it when you're home for the day and right prior to bed. A week's worth should be sufficient. We need a first-generation antihistamine like Diphenhydramine as they pass through the blood brain barrier to block histamine H1 receptors on neurons throughout the brain including the hypothalamus and trigeminal ganglia... "Non-Drowsy" type antihistamines cannot do this so will be less effective if you're suffering from an allergic reaction... Once the histamine H1 receptors are blocked, vitamin D3 can do its thing with genetic expression to prevent your CH. Take care and please keep us posted. V/R, Batch |
Title: Re: Batch regimen recently stopped working - help Post by JT08 on May 12th, 2017 at 4:33pm
Yep, you were absolutely right. I skipped the Diphenhydramine last night, and opted for Claritin before getting Batch's latest response this morning. Got a killer headache mid-day today. That was after a full 36 hours of relief following 2 nights of Diphenhydramine.
I'm going to take the Diphenhydramine again tonight, and continue for next 5 days. How will I know when it's OK to come off it? I'm also doing the frequent Vitamin C as noted in other threads. I've been seeing an acupuncturist as well - no idea if this helps but I do feel tension relief. I feel like a headache trigger for me is tension in my neck/head, possibly from working out, sitting at a desk all day, or sleeping on it wrong. Thanks for everyones help. I'll report back when there's more news. |
Title: Re: Batch regimen recently stopped working - help Post by Batch on May 12th, 2017 at 6:41pm
Hey Gypsystormshadow,
Good on you for starting the anti-inflammatory regimen... You won't be sorry... Please keep us posted.... There can be a few bumps in the road to a CH pain free existence on this regimen and nearly all are easy to navigate once we know about them. Take care, V/R, Batch |
Title: Re: Batch regimen recently stopped working - help Post by Batch on May 12th, 2017 at 6:49pm
Hey JT,
A week to 10 days is usually sufficient time on the Diphenhydramine... You'll know if you need to stay on it longer... That said, if the pollen is still heavy, you many need to stay on it longer... If that's the case, I take the Children's Allergy Medicine, Liquid Benadryl (Diphenhydramine HCL)... 12.5 mg in the morning (5 mL in the measuring cap) and another 12.5 mg in the evening work just fine for me. I try to hold it in my mouth for 3 to 4 minutes swirling it under my tongue and between cheek and gums to get the sublingual administration... The only problem is that stuff is very sweet... Even at the lower dose, Diphenhydramine will make you drowsy so don't drive while taking it... If you need to drive, take one dose when you get home for the day and the second prior to bed. Take care V/R, Batch |
Title: Re: Batch regimen recently stopped working - help Post by Gypsystormshadow on May 15th, 2017 at 6:54am
Thanks Batch. It's been 3 days on the anti-inflammatory regime and I'm following the 4 week vitamin D3 schedule. A bit of a background. Diagnosed with CH's in 2000 with all the usual suspects of having to take all my own research to the GP (I have been having cluster headaches since I was 12 years old, episodic, 6 - 12 week clusters every 3 to 5 years, diarised) he was great and put me on Ergotamine and I found that this worked but I needed really high do\ses and often - ice works well for me to. In 2003 I tried Verapamil and 02...both worked well and the CH's stopped in about 6 weeks. Next cluster was in 2008 and I tried Sumatriptan nasal spray, tablets and injections....I have up to 4 CH's per night and wake with a kip of around 7 or 8 so toxicity was a problem with this med - 02 worked well again. So now I've been 9 years clear of CH's....YEAH 9 YEARS! This cluster started on May 8 and I'm waking with them every 2 hours. Since starting the anti-inflammatory regime I've had shadows, nothing full blown.....
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Title: Re: Batch regimen recently stopped working - help Post by Mike NZ on May 19th, 2017 at 12:31am |
Title: Re: Batch regimen recently stopped working - help Post by Chuffy on May 20th, 2017 at 10:54am
JT08, I hope you are getting on top of it.
I must have jinxed myself with my previous reply as shortly after that I got woken up at 1am by shadowing, first time in 5 years!! Took 10,000iu of D3 and went back to sleep. Couple of nights later same thing again so I thought I'd better sort it properly. My 5,000iu a day dose had obviously let my levels drop too low over time. Anyway, for the last three days I have been taking 20,000iu in the morning and again in the evening and also upped the Magnesium. Got hold of some diphenhydramine hcl which isn't that easy these days in the UK and took 50mg of that a day split into two doses. So far so good, the beast seems to be backing off. Boy that HCL knocks you out :o |
Title: Re: Batch regimen recently stopped working - help Post by JT08 on May 23rd, 2017 at 1:02pm
Hey Batch,
I did about 7 days of Diphenhydramine and felt a significant improvement which has lasted about 5-6 days. I still start to get headaches when certain things trigger, but Sumatriptan knocks them out pretty quickly. I'll take this over the alternative any day. I'm still on 50,000 IU of D3 a day. Is it OK to stay at this dose? I noticed when I brought it down to 40,000 the past 2 days, I'm getting precursors again. I've been on the 50K dose for an extended period of time... want to make sure that's OK. Thanks! |
Title: Re: Batch regimen recently stopped working - help Post by JT08 on Jun 13th, 2017 at 3:01pm
Hello,
I wanted to check back in here with an update. I stayed on the 50K IU dose/day through my wedding last week. It allowed me to get through the last few weeks with no headaches, as I popped a Sumatriptan anytime I felt one coming on even in the slightest (and it worked, which they hadn't been previously). Over the past 5 days, I dropped back down to 20 IU/day, and have been feeling some discomfort although no full blown headache yet. I had a blood test yesterday and I'm over 96 ng/mL - to the point where my doctor said it was too high to even be tested accurately. My calcium levels are fine. But with level that high, I was still at risk for getting headaches, and had been getting them regularly about a month ago. Any insight on why this would be? Reminder, I took the Benadryl for about 10 days (with a few day break in between), which did bring relief, but it's just not realistic for me to stay on that - it knocks me out, makes me groggy and unable to function at work the next day. Any additional insight is appreciated. Thanks so much |
Title: Re: Batch regimen recently stopped working - help Post by Batch on Jun 13th, 2017 at 6:21pm
Hey JT,
Interesting question and comments... For starters, there's nothing wrong or dangerous about a 25(OH)D serum concentration of 96 ng/mL... or even higher as long as your serum calcium remains within limits. There's also no reason to drop your vitamin D3 intake below 10,000 IU/day... particularly if CH symptoms are present. I maintain my 25(OH)D between 130 to 160 ng/mL from March through July to account for the heavy pollen season. My PCP just smiles during my annual physical, usually in April, enters my 25(OH)D lab results in my medical record and says... "As long as your total calcium stays withing its normal reference range and your PTH is in the lower third of its normal reference range... you know what you're doing." You need to understand we live in an uber litigeous society where physicians need to play a CYA over matters like this to avoid scurrilous medical law suits by ambulance chasing lawyers. Print out a copy of the anti-inflammatory regimen treatment protocol and give it to your doctor... That way you'll both be singing from the same sheet music... It doesn't help when pseudo government organizations like the National Academy of Medicine (NAM), Health and Medicine Division (HMD) formerly called the Institute of Medicine (IOM) sets the Recommended Dietary Allowance (RDA) for Vitamin D3 at 600 IU/day from birth to 70 years of age and the Upper Level Intake (UL) level for vitamin D3 at 4000 IU/day. You don't need to be a member of Mensa, the high IQ society, to connect the dots to see where Big Pharma appears to be waging a long-standing major campaign against the use of vitamin D3 for other than maintenance of bone mineral density. Their minions on K Street make sure key members of Congress write legislation preventing physicians from publicly stating the health benefits of vitamins and minerals like vitamin D3 in the treatment of many non-skeletal disorders. Meanwhile these laws allow Big Pharma to flood TV with commercials for very expensive biologics like Humira (Adalimumab) when 12 cents worth of vitamin D3 would be equally or more effective in the treatment of the same disorders with no adverse reactions... So here's the bottom line... Vitamin D3 is very safe... in spite of Big Pharma's obfuscation and misinformation about the health benefits of Vitamin D3... Yes, you can take too much vitamin D3, but then drinking too much water can be fatal... In the history of the FDA's Adverse Events Reporting System (FAERS), not one death has been attributed to vitamin D3... You cannot say that for many of the Rx and OTC medications flooding the market or used to treat CH... See the following list from a 2015 FAERS report. Deaths due to VERAPAMIL - 229 Deaths due to DEPAKOTE - 168 Deaths due to TOPAMAX - 66 Deaths due to LITHIUM CARBONATE - 56 Deaths due to LYRICA - 703 Deaths due to GABAPENTIN (Neurontin) - 202 Deaths due to VALPROIC ACID - 194 Deaths due to BACLOFEN - 102 Deaths due to PREDNISONE - 513 Deaths due to PREDNISOLONE - 163 Deaths due to COUMADIN - 458 Deaths due to IMITREX - 32 Deaths due to INDOMETHACIN - 18 Deaths due to OCTREOTIDE -1317 Deaths due to CALAN - 208 Deaths due to CLOMIPHENE CITRATE - 8 Intra-uterine Deaths Deaths due to PROPRANOLOL HCL - 67 Deaths due to ATENOLO - 62 Deaths due to AMITRIPTYLINE - 184 Deaths due to PAXIL - 357 Deaths due to LIPITOR - 865 Deaths due to CRESTOR - 238 Deaths due to NEXIUM - 357 Deaths due to AMBIEN - 243 Deaths due to PRILOSEC - 0 Deaths due to DIHYDROERGOTAMINE - 0 Deaths due to OXYGEN - 0 Over The Counter NSAIDs Deaths due to NAPROXEN (Aleve) - 142 Deaths due to ASPIRIN - 645 Deaths due to TYLENOL - 964 Deaths due to EXCEDRIN - 500 Deaths due to IBUPROFEN - 661 Over The Counter Supplements/Nutrients Deaths due to MELATONIN - 0 Deaths due to MAGNESIUM OXIDE - 0 Deaths due to CALCIUM CITRATE - Not Listed Deaths due to BORON - Not Listed Deaths due to VITAMIN A (Retinol) - 6 Deaths due to VITAMIN B (Complex) - 2 Deaths due to VITAMIN B 12 - 0 Deaths due to VITAMIN C - 0 Deaths due to Vitamin E - 2 Deaths due to VITAMIN D3 - 0 VITAMIN D3 TOXICITY - 2 Deaths due to VITAMIN K - 2 Deaths due to VITAMIN K2 - Not Listed Deaths due to ZINC OXIDE - Not Listed There's a very recent study published in the Journal Dermato-Endocrinology Volume 9, 2017 - Issue 1, that should put your doctor's fears of vitamin D3 intoxication/toxicity to rest. Evaluation of vitamin D3 intakes up to 15,000 international units/day and serum 25-hydroxyvitamin D concentrations up to 300 nmol/L on calcium metabolism in a community setting S.M. Kimball, N. Mirhosseini & M.F. Holick Dermato-Endocrinology April 13, 2017 Abstract Supplementation by the general public with vitamin D at doses above the Tolerable Upper Level of Intake (UL) is becoming quite common. The objective of the current analysis was to characterize the effect of vitamin D supplementation at doses up to 15,000 IU/d in a community-based program on vitamin D status, calcium homeostasis as well as on kidney, liver and immune function. We evaluated data collected for 3,882 participants in a community program for whom there were blood measurements at program entry and at follow-up within 6–18 months between 2013 and 2015. Participants were supplemented with a wide range of vitamin D doses (1,000 – 15,000 IU/d) aimed at achieving serum 25-hydroxyvitamin D [25(OH)D] levels of at least 100 nmol/L. Serum 25(OH)D concentrations up to 300 nmol/L (120 ng/mL) were achieved without perturbation of calcium homeostasis or incidence of toxicity. Hypercalcemia and hypercalciuria were not related to an increase in 25(OH)D concentrations nor vitamin D dose. To achieve serum 25(OH)D levels >100 nmol/L on average, required vitamin D intakes of 6,000 IU/d for normal Body Mass Index (BMI), 7,000 IU/d for overweight and 8,000 IU/d for obese. Doses of vitamin D in excess of 6,000 IU/d were required to achieve serum 25(OH)D concentrations above 100 nmol/L, especially in individuals who were overweight or obese without any evidence of toxicity. Serum 25(OH)D concentrations up to 300 nmol/L (120 ng/mL) were found to be safe. Were you taking the Benadry tablets or Children's Liquid Benadryl (Diphenhydramine HCL) Allergy Medicine? I've found that 12.5 mg of the Children's Liquid Benadryl in the morning and another 12.5 mg in the evening causes a lot less drowsiness while still helping vitamin D3 to do its thing preventing my CH... Regarding your doctor's comments on the assay method used to measure serum 25(OH)D being unreliable... The gold standard for the 25(OH)D lab test is Liquid Chromatography Dual Mass Spectrometry (LC-MS/MS). He can order this lab test from Quest Diagnostics using the following CPT Code and Quest Diagnostic Test Name: 25-Hydroxyvitamin D3 [25(OH)D3]. CPT Code 82306. Quest Diagnostics Test Name: 92888-QuestAssureD 25-OH Vitamin D (Total), LC/MS/MS. This assay method is accurate up to 512 ng/mL for Vitamin D3 and 512 ng/mL for vitamin D2. I realize this reply is a bit long, but I hope it helps... Take care and please keep us posted. V/R, Batch |
Title: Re: Batch regimen recently stopped working - help Post by pattik on Jun 13th, 2017 at 6:35pm
Hi JT,
I had a similar experience to yours regarding a blood test being over the lab's limit and too high to measure accurately. If you had a blood draw at a medical facility, I would suggest getting a home self-test kit. I have used The Vitamin D Council's test a couple of times, as well as another company's home test. The blood spot test you do at home will have a greater value range than the blood draw you just had done. Plus, I think it's a good idea to do this test a couple times a year. It will help you to learn what numbers are right for your personal situation. Batch has useful information about viamin D toxicity, and having numbers you can trust will help you to make dosage decisions. After four years mostly pain free, I'm now having CH trying to return. Keeping it at bay is challenging--always a moving target. But knowing what range you need your blood test numbers to be in can be really helpful. Patti Edited to add a thanks to Batch for posting that new toxicity study. :) |
Title: Re: Batch regimen recently stopped working - help Post by Batch on Jun 14th, 2017 at 1:09am
Hey Patti,
Thanks for the kind words... Your comments on the home blood spot test kit for 25(OH)D are right on target as are your observations that this method of measuring serum 25(OH)D yields higher results that some of the other medical lab test assay methods. There's a good reason for this. The home blood spot test kit for 25(OH)D uses the same assay technology as Quest Diagnostics, the gold standard LC-MS/MS. When the same blood draw sample is tested with the DiaSorin (LIAISON) Assay method that uses chemiluminescent immunoassay (CLIA) technology for the quantitative determination of 25(OH)D (a total of 25(OH)D3 and 25(OH)D2) and the LC-MS/MS assay method that measures the same total of 25(OH)D3 and 25(OH)D2, they yield different results with the LC-MS/MS higher by as much as 20 ng/mL. Before you get confused over all this... allow me to muddy the water even further. The LC-MS/MS is slightly more accurate with a concordance correlation coefficient (CCC) of 0.99 and bias of 0.56 μg/L (1.4 nmol/L) where the DiaSorin CLIA assay method has a CCC of 0.97 and a mean bias of 1.1 μg/L (2.7 nmo/L)... Ultimately, they both meet the coefficient of variation (CV) limit of acceptability of < 10%. Bottom line... Either assay method will work just fine as long as you stick with it for two or more consecutive lab tests. That said, there is an upper limit on readability for the chemiluminescent immunoassay (CLIA) assay method... It can only measure total 25(OH)D up to 167 ng/mL where the LC-MS/MS can measure 25(OH)D3 serum concentrations up to 512 ng/mL. That might not appear to be a big thing for most CHers who maintain their 25(OH)D between 80 and 100 ng/mL as suggested... I'm a little different... well... maybe a lot different... Having spent the last 6 years reading every vitamin D3 study listed in ClinicalTrials.gov (over 830 of them since 2000) and meeting with or exchanging email with some of the giants in the field of vitamin D3 therapy like Dr. Robert Heaney, Dr. Cedric Garland, Dr. Reinhold Vieth and Dr. Cicero Coimbra, I'm very comfortable with long term vitamin D3 doses up to 20,000 IU/day. I'm also comfortable with vitamin D3 loading doses up to 50,000 IU/day for upwards of two weeks and a 25(OH)D serum concentration up to 200 ng/mL (500 nmol/L) as long as my serum vitamin D3 stays within its normal reference range of 8.5 to 10.5 mg/dL and PTH in the lower third of its normal reference range (17 to 70 pg/mL). In short, I'm not a risk taker... I read and comprehend... I listen to and read what the real vitamin D3 experts say. I also listen to what my body is trying to tell me... I know when everything is functioning properly and I know when something isn't right. As CHers, we've become very adept at listening to our bodies... How many times have we sat there in the throws of a major head banger with a red hot poker jammed through the temple, eyelid swollen and tearing, nose running like a faucet... and we knew instantly when the CH pain started to diminish even the slightest as that signaled the beginning of the end of that attack. We've learned a lot about our disorder in the last six years and we've compiled enough evidence to say with confidence, that a CHer with active CH is vitamin D3 insufficient/deficient and that vitamin D3 with the cofactors should be able to prevent CH. I've used data from the online survey of over 200 CHers taking this regimen to prevent their CH and comments from many more CHers here at CH.com to fine tune the anti-inflammatory regimen... As a result, the survey data for 2016 indicates better than 90% of CHers taking the survey that year experienced a significant reduction in the frequency of their CH from an average of 3/day down to 3/week. Better than 70% of the CHers reporting in 2016 experienced a complete cessation of CH attacks... That's all in the first 30 days from start of regimen... I attribute this increase in efficacy to the improved availability of the anti-inflammatory regimen treatment protocol, the use of the 2-week vitamin D3 loading schedule and the addition of a week to 10 day course of Benadryl (Diphenhydramine HCL). Sooo... if you're taking this regimen and still have lingering CH symptoms... Tune the regimen... As long as the 25(OH)D serum concentration is between 80 and 100 ng/mL your vitamin D3 intake is adequate. After that it's easy to bump the doses of Omega-3 Fish Oil, double the magnesium dose to 800 mg/day split am/pm and add a week to ten day course of Benadryl (Diphenhydramine HCL) at 50 mg/day split 25 mg in the am and pm. Just be careful and not drive if at all possible. If you do need to drive, take 25 mg when you're home for the day and another 25 mg prior to bed... You'll sleep like a baby... If there's no joy after all that, go back on the vitamin B 100 complex, start taking vitamin C at 1000 mg every two hours throughout the day and if there's still no joy, start a course of curcumin at 500 mg/day with meals. If you've had an infection and your doctor put you on an antibiotic, be sure to start a course of probiotic... The reason for this is simple... The human gut is colonized with friendly colonies of bacteria and biota called the microbiome. It contains roughly 70% of our immune system... The antibiotic is indiscriminate, so has wiped out the friendly colonies of symbiotic bacteria in the microbiome... This leaves us with a weak immune system and usually a case of the runs... The probiotic helps recolonize the microbiome... In short, a happy gut is a healthy gut... Take care, V/R, Batch |
Title: Re: Batch regimen recently stopped working - help Post by pattik on Jun 14th, 2017 at 10:09am Batch wrote on Jun 14th, 2017 at 1:09am:
I have given this part of using this regimen a lot of thought. The home test I took in March was 120 Ng, and I have had tests come back higher. At that point everything was great. But just a few weeks later, while still on an elevated dose of 15K/day, a CH cycle started up, albeit pretty mild. When it wouldn't shake off (and worsened a little), I started the 40K dose for a few days, and things are now improving. I wish we knew all the health conditions/inflammation which can hurt this regimen's effectiveness. I have my share of age-related issues, and when my chronic back or shoulder pain increases, I can be pretty certain my D3 levels are dropping, and the odds are better for a CH attack. That's why I have to be so cognizant of minor changes I experience. And that's why I'm also wondering what a normal and safe blood level is for someone like me who has multiple issues using up the D3. Who knows, maybe 120 Ng or even higher is normal and safe under certain conditions. |
Title: Re: Batch regimen recently stopped working - help Post by LasVegas on Jun 22nd, 2017 at 2:59am
Yo Batch,
The pdf link within this thread states Magnesium recommendation is chloride, magnesium malate, magnesium glycinate or magnesium citrate.....I thought Oxide was preferred? Please clarify. Also, which type of Calcium is best if multi-vitamin does not contain enough mg dosage? I'm pretty sure you recommended Citrate, but please clarify that too. Lastly, how was the fishing trip? Photos please! Thanks ole buddy ;) -Gregg in Las Vegas |
Title: Re: Batch regimen recently stopped working - help Post by JT08 on Jan 11th, 2018 at 10:13pm
Hello! I’ve gone pain free since my wedding in June. I think changing of seasons has brought my headaches back just the last few weeks.
I’ve been on a loading dose of 80K IU of D3 because I’m desperate. Still taking everything else on the regimen except K2. Could that be a difference maker? I considered taking Benadryl but I have no allergies at all and the pollen count is currently zero in my area. I hate taking Benadryl because it slows me way down and hinders my work. Any other suggestions on how to kick this cluster quickly? Thanks! |
Title: Re: Batch regimen recently stopped working - help Post by Batch on Jan 12th, 2018 at 4:11am
Wow! Great posts and great questions... I'll try to address them in order...
Patti, as I indicated in the earlier post, I'm comfortable with a 25(OH)D serum concentration up to 200 ng/mL... I've had it that high for a few weeks with no problems. My serum calcium remained well within its normal reference range and my PTH was in the lower third of its normal reference range. I'm a chronic CHer so have maintained an average 25(OH)D serum concentration at 140 ±50 ng/mL taking an average vitamin D3 dose of 20,000 IU/day for the last three years. This gets me through the high pollen season with only a few days of Benadryl (Diphenhydramine HCL). My PCP is ok with my 25(OH)D in this range as long as my calcium and PTH remain in the green. Accordingly, I would work with my PCP to set up prescriptions for the before and after labs of serum 25(OH)D, calcium and PTH then start titrating the vitamin D3 dose up from the present maintenance dose by 5,000 IU every 3 days until completely pain free for 3 days then stay and that dose for at least 15 days before getting another set of labs. It's also important to drink 2.5 liters of water a day if you're going to push your 25(OH)D above 120 ng/mL. This helps flush excess calcium from the kidneys. Yo Greg, Howzit in Idaho? Great question regarding the calcium supplement, which calcium salt works best and what I take... Nearly all the vitamin D3 experts say calcium chloride works best primarily due to the low incidence of osmotic diarrhea. In order after that come magnesium glycinate and magnesium oxide. The consensus holds that magnesium citrate has the highest incidence of osmotic diarrhea. I should point out that I've tried all of the above or I wouldn't suggest them in the treatment protocol. I happen to take the Nature Made High Potency 400 mg liquid gelcaps containing magnesium oxide... I've not had any problems with them, but then I've a cast iron GI tract... What I've found over the years is if I miss a dose of magnesium, I'll start getting hand/finger and leg cramps. Our bodies consume magnesium during the enzymatic reactions that hydroxylate vitamin D3 to 25(OH)D, and 25(OH)D to 1,25(OH)2D3. Without magnesium supplements, we can easily end up with a calcium-magnesium imbalance and that leads to muscle cramps. The cramps clear in a couple hours after taking the magnesium. Hey JT, you're my kind of CHer... I've taken 100,000 IU of vitamin D3 in a single dose after one of my 25(OH)D burn down tests where I stopped taking vitamin D3 until I got hit... Just don't stay at 80,000 IU/day vitamin D3 for too long... and be sure to drink 2.5 liters of water a day... A trip to your PCP for labs of your serum 25(OH)D, calcium and PTH is also in order after you've stabilized at a new maintenance dose for a couple weeks. Have you completed the 3-month course of vitamin B 50 Complex? This was a topic of interest with Dr. Stasha Gominak at the 20th Conference on Vitamin D3 last March in Orlando, FL. She now suggests her headache patients stay on the vitamin B 50 complex year round. If you're taking the Kirkland brand 50+ Mature Multi, you should be getting sufficient amounts of the B vitamins... The Mature Multi formulation also contains chromium picolinate recommended by Dr Coimbra in his vitamin D3 regimen used by MS patients to prevent outbreaks. Regarding the Benadryl (Diphenhydramine HCL)... Many allergic reactions are subclinical, i.e., no outward or obvious symptoms yet they're still there triggering mast cells to degranulate dumping histamine into your system... The histamine triggers neurons within the trigeminal ganglia to express calcitonin gene-related peptide (CGRP). This is the nasty neuropeptide that stimulates neurogenic inflammation and the pain we know as CH... Accordingly a first-generation antihistamine like Benadryl (Diphenhydramine HCL) crosses the blood brain barrier to block histamine H1 receptors and this stems the release of CGRP. 25 mg of Benadryl (Diphenhydramine) every four hours during the day for a few days will tell you if an allergic reaction is part of your problem in going CH pain free. Just be careful and not drive while taking this much Benadryl as it will make you drowsy... If you need to drive during the day, take 50 mg when you get home for the day and another 50 mg at bed time... If there's no joy... i.e., favorable changes in your CH patterns after 3 to 4 days of Benadryl, discontinue... I'd also start taking vitamin C at a 1000 mg every 4 hours throughout the day to see what happens. Vitamin C is a great antiviral, antibacterial and antifungal agent. The other items on the check list include starting a good probiotic and a 1000 mg/day Turmeric (Curcumin). Hope this answers the questions... Take care and please keep us posted. V/R, Batch |
Title: Re: Batch regimen recently stopped working - help Post by pattik on Jan 15th, 2018 at 10:22am Batch wrote on Jan 12th, 2018 at 4:11am:
Batch--thanks for the feedback. When I made that last post on June 14th, I didn't yet realize that I was entering a full-blown CH cycle. I think I was in a little denial from the lovely four year remission from the D3, as well as the time of year (summers are very unusual). What was also unusual, was the length. My previous cycles have been consistently 6 weeks, and this one lasted eight weeks. That might be a subject for another thread. I tried some loading doses with only short-term improvements. So titrating up will be a new thing to try. My recent blood test came in at 118 ng after being on 15,000 mg for most of 2017. I'm not that worried about this level, except for the fact that this last cycle showed up anyway. But I have lots of age-related inflammation issues, so I'm kind of flying blind with figuring out what is appropriate and safe. Thanks again for the input. Much appreciated. Patti |
Title: Re: Batch regimen recently stopped working - help Post by JT08 on Sep 20th, 2018 at 11:03am
Hey Batch,
Replying to my original post from last year - headaches are back as of the last 3 weeks and this is the worst they've been since last May (my original post). I've been on the D3 regimen continuously as it's the only thing that keeps me sane. I was around 30K-35K IUs pretty regularly over the course of the past year (anything below that I started to suffer). As of the last 3 weeks I've been at 70K IU. I'm honestly considering bumping up to 100K IU to see if I can knock it out. I'm also on the other vitamins/supps like magnesium, fish oil, vitamin K, vitamin A, multi-vitamin. Just started the vitamin B50 complex two days ago and have started to pop Vitamin C throughout the day. I've tried the allergy meds in the past and it absolutely kills my work days, even when I take it the night before. Is there anything else I can be trying? Is it possible I've built up a tolerance to Vitamin D3? Is there any way to reset that tolerance so it's more effective for me going forward? Thanks! |
Title: Re: Batch regimen recently stopped working - help Post by Batch on Sep 21st, 2018 at 3:58pm
Hey JT,
I know what you're going through... Been there... Had the same thing happen to me while fishing in Pelican, AK last June... Clearly not fun. In my case, it was exposure to heavy doses of mold spores. The first three weeks of my month long fishing trip to Pelican were spent blissfully CH pain free taking 10,000 IU/day vitamin D3 plus the cofactors... Then we had an electrician rewire the circuit box. In doing so he removed the sheet rock around the circuit box. That night I got whacked three times. I didn't connect the dots for the next 4 days and the frequency of my CH jumped from 3 to 6 hits/night. 50,000 IU/day vitamin D3 and 200 mg/day Diphenhydramine proved useless. Had it not been for oxygen therapy with hyperventilation that aborted my CH in an average of 7 minutes, I would have been in deep ka ka. I finally took a look at the circuit box and found the internal wall space loaded with a thick layer of gray furry mold. The house was built in 1951 and the roof had leaked at times. I'd brought along some simple saline nasal spray and a bottle of Bio-Tech D3-50 (50,000 IU water soluble vitamin D3). I rinsed my nasal passages a couple times with the saline nasal spray and took one of the Bio-Tech D3-50 capsules the night before the Beaver sea plane dash and splash back to Juneau and Alaska Airline flight to Seattle. I slept like a baby that night. I've continued to use the Bio-Tech D3-50 at one capsule a week and have been CH pain free ever since. The bottom line to this story is allergic reactions to CHers are like kryptonite to Superman... Accordingly, I wouldn't take the vitamin D3 dose any higher. Your problem is more than likely an allergic reaction and depending on the allergen exposure level, even Benadryl (Diphenhydramine HCL) will be ineffective. Here's a list of what I did to solve this problem. 1. Get on amazon and order some Bio-Tech D3-50. Overnight delivery might be prudent if you can get it. Try one 50,000 IU capsule of the D3-50 every three days as an initial dose. If you stay CH pain free, reduce the dose to one capsule every 5 days then once a week. 2. Pick up some saline nasal spray and rinse your nasal passages twice a night. I haven't tried one yet but one of the Navage nasal irrigation systems might be helpful. This reduces the exposure to airborne allergens that collect in the nasal passages. 3. Give yourself a vacation and get out of your home for a couple days. If any of the above actions cuts the frequency of your CH, start looking for the source of the allergens. a. Replace the air filters in your home air handler. b. Pick up a hypoallergenic (dust mite proof) mattress cover and new pillows. Wash the sheets and pillow cases frequently and have the blankets and bed covers dry cleaned. Lots of people are allergic to dust mite poo. It's everywhere in the bedding and bedroom. c. Make sure your vacuum has a new hypoallergenic dust bag d. A hypoallergenic air filter in the bedroom is the next thing to try. These steps have proved effective for other CHers with our problem so please keep us posted. Take care, V/R, Batch |
Title: Re: Batch regimen recently stopped working - help Post by JT08 on Sep 21st, 2018 at 5:52pm
Thanks as always, Batch. Placing the order now and will start nasal spray asap tonight. Coincidentally leaving town tomorrow for a few days so fortuitous timing. Do I take the D3-50 in addition to my usual dose of D3 or is that a replacement? The 50K dose will last 3 days?
|
Title: Re: Batch regimen recently stopped working - help Post by Batch on Sep 21st, 2018 at 8:11pm
Hey JT,
Thanks for the reply. The Bio-Tech D3-50 is a replacement... I've found it to be faster acting (I hesitate to call it an abortive, but it knocked down a CH in less than 20 minutes) and more effective at a lower dose. I found one D3-50 was effective every 3 days (72 hours) after flying back from Pelican, AK so tapered the dose by extending the time between doses to one capsule every 5 days, then 7 days. I've gone two weeks without taking a D3-50 on two separate stints without a CH hit, but still made it a point to take all the cofactors, magnesium in particular. I've settled on a D3-50 once a week and will stay at that dose for a month then go in for labs for my serum 25(OH)D, calcium and PTH to get a good sensing of the response at this dose. I suspect the change in venue and nasal rinse with saline nasal spray will have a significant effect in lowering the frequency of your CH... Take care and please keep us posted. V/R, Batch |
Title: Re: Batch regimen recently stopped working - help Post by pattik on Sep 27th, 2018 at 10:42am Batch wrote on Sep 21st, 2018 at 8:11pm:
Hi Batch. I'm trying this new D3-50 too. Please share your reaction to this new form after you get tested. I'm trying one every 5 days, and my fat-based D3 dose has been 15K/day. I'm interested to know if a smaller dose is more effective than the fat-based version for you. Thanks. Patti |
Title: Re: Batch regimen recently stopped working - help Post by Batch on Sep 27th, 2018 at 3:38pm
Pattik,
I've found the water soluble vitamin D3 to be more effective at a lower dose than the liquid soft gel formulations. I was getting hammered by CH 5 to 6 times a night due to an allergic reaction to mold spores. 25,000 to 30,000 IU vitamin D3/day liquid soft gels plus 200 mg/day Benadryl proved ineffective. Had it not been for oxygen therapy with hyperventilation, I would have been in the hurt locker. I switched to the Bio-Tech D3-50 as my supply of the 5,000 iU vitamin D3 soft gels was running low. I slept like a baby that night even with the mold spores still floating around our fishing cabin. I went 3 days without any vitamin D3 (an average of 16.6 IU/day) then started to feel the onset of a CH so took another 50,000 IU water soluble vitamin D3 capsule. The CH shadow vanished in less than 30 minutes. I flew home the next day so waited 5 days before taking another dose of vitamin D3. As I indicated earlier, I've been taking one of the 50,000 IU water soluble vitamin D3 capsules/week ever since and have remained CH pain free. Hope this helps. Take care, V/R, Batch |
Title: Re: Batch regimen recently stopped working - help Post by JennaP on Sep 27th, 2018 at 4:29pm
Paging Batch
I was sent here from the fb page. I have no idea how to start a new thread and it wouldn’t let me message you, so I’m highjacking this one (sorry everyone who is receiving alerts on here) My question is....are verapamil and d3 a good combo? I’m kind of new to both. Reading the vit d wiki I saw someone had an issue with the calcium and magnesium making the verapamil not work....maybe? Tips? Does it just depend on the person? I feel like I maybe have a week tops before my head goes nuclear and I’m desperately trying to stop it. My water soluble d3 will be here today but I have been loading 50,000 with my old stuff for the last two days (along with everything else). Also turmeric will be in the amazon package coming tomorrow. Can’t get into the dr til next Thursday and I’ve moved to a new city so I’m jumping in without testing my levels. Should I throw Benadryl in there? Should I nix the verapamil completely? Had it rx’d the for the first time last CH (may) but chickened out on taking it ( I was breastfeeding at the time). I can’t figure out how people are taking verapamil for episodic CH? I’m too scared of becoming chronic (and/or needing a pacemaker) to take it daily 365....mine are not predictable enough though to know exactly when to start to be ahead of the headache by much. I saw some people combine it with prednisone...so is predinose killing the headache until the verapamil kicks in? That’s one of the very few prescriptions I have not tried yet, should I ask for prednisone at the dr appt next week? Should I just take everything I mentioned??? :D honestly tho I very much hate taking medication of any kind but DAMN I really really really do not want this headache to kick in so I’m desperate. Thank you in advance for everything you do! |
Title: Re: Batch regimen recently stopped working - help Post by JennaP on Sep 27th, 2018 at 9:30pm
Thank you so much I will definitely switch as soon as they get here (love that sweet sweet free amazon one day shipping lol). So you said nothing wrong with the verapamil and 10,000 IU but I’ve already popped two verapamil today and I’m still loading with 50,000 😬 hope that’s ok. Is that a no to the Benadryl? I don’t keep up on the message boards (obviously) and that’s something new to me that I’ve seen mentioned several times in my search for answers about vit d3 and verapamil. And thoughts on prednisone? If I have taken my verapamil soon enough I wouldn’t need the prednisone right? Or should I not be taking the verapamil at all in case the vit d3 doesn’t stop it.... in that case would it be preferable to do the predinose to verapamil routine instead of verapamil alone? As much as I would love to bet the farm all on the d3 (and I have my fingers crossed) I want to make sure I come at this the best way.
And idk about that being chronic bit lol I don’t have much luck with medications. For some reason I can never kill a cluster with MM, at most I get a pain free night the night I take them. Really just desperately seeking a preventative instead of abortive.....I might try microdosing between cycles and see if they work better for me that way |
Title: Re: Batch regimen recently stopped working - help Post by JennaP on Sep 27th, 2018 at 9:58pm
Oh! And: I’m taking the Kirkland mature multi...that doesn’t qualify as too much calcium does it?
Also: Ajovy? Aimovig? Saw these migraine medicines mentioned on the fb group...thoughts? Mentioned by what seemed to be a trusted dr that is familiar with CH on the page. Many thanks always! |
Title: Re: Batch regimen recently stopped working - help Post by Batch on Sep 27th, 2018 at 11:39pm
Jenna,
I chose the Kirkland 50+ Mature Multi for this regimen as it only has 220 mg of calcium and most of the other vitamin D3 cofactors needed in Vitamin D3 pharmacokinetics and pharmacodynamics in one daily tablet. I've taken it for nearly 7 years. As far as the anti CGRP monoclonal antibodies (mAbs) like Ajovy (Femanezumab) and Aimovig (Erenumab) go in preventing migraines... My analysis of their RCT results and the alternative, vitamin D3, indicates $1.50/month worth of vitamin D3 is slightly more effective in reducing monthly migraine days than the $1,725 to $1,800/month mAbs... You can do your own cost effectiveness analysis... As far as Benadryl (Diphenhydramine HCL) goes, I would only take it if I hadn't responded to at least the first 5 to 7 days of the 12-Day vitamin D3 loading schedule. No response in that amount of time is a likely indication of an allergic reaction. An allergic reaction to CHers is like kryptonite to Super Man. It makes nearly all forms of CH intervention ineffective. If adding the Diphenhydramine does work to reduce the frequency of CH, start looking for the allergen causing the problem avoid exposure to it. Take care and please keep us posted. V/R, Batch |
Title: Re: Batch regimen recently stopped working - help Post by JT08 on Nov 19th, 2019 at 4:21pm
Hey Batch,
I'm replying again to my ongoing thread so you have the history if needed. I've been headache free for 9+ months using the D3 regimen. As of 3 weeks ago, I started getting headaches again pretty regularly. Usually happens to me when the seasons start to change. I'm still on the regimen and have been forced to up my D3 to 90K IUs per day (D3-50 + 4 10K liquigels) as of about 2-3 weeks ago. As soon as I reduce by even 10K, I get hit. I added in B50 Complex, been using saline nasal spray 2x day, washed the sheets and changed air filter. I'm desperate again - any additional thoughts? Benadryl seems to help slightly when I'm on it but it absolutely destroys my productivity. I wake up super groggy and out of it no matter when I take it or how much I take. Can't be doing it and going to work next day. Any additional recommendations? I do have a blood test scheduled in early December with my doctor. I also have a dose of Aimovig at home but not sure it's worth it + side effects. I've never tried it before. Thanks as always. JT |
Title: Re: Batch regimen recently stopped working - help Post by Batch on Nov 21st, 2019 at 12:58pm
Hey JT,
Sorry the CH beast has been jumping ugly. What you're experiencing happens from time to time to all of us taking the anti-inflammatory regimen. It's likely due to an allergic reaction. This time of year the culprit allergen is likely leaf mold spores but it could be due to dietary sources like wheat products. The best course of action is to start a vitamin D3 loading schedule at 50,000 IU/day and continue at this dose until you experience a significant reduction in the frequency of your CH or a lasting pain free response for at least 48 hours. At that point you can drop back to your usual maintenance dose of vitamin D3. Remember to double the magnesium dose to 800 mg/day split 40 mg with breakfast and 400 mg with the evening meal. while loading D3. 30 days after starting this loading schedule, see your PCP/GP for labs of your serum 25(OH)D3, calcium and PTH. As long as your serum calcium remains within its normal reference range, there is no vitamin D3 intoxication/toxicity. It's best to have your PCP/GP write the lab orders for the nearest Quest Diagnostics. They us the Liquid Chromatography Dual Mass Spectroscopy (LC-MS/MS) assay method. It has a maximum reading of 512 ng/mL where the DiaSorin assay is only good to 117.4 ng/mL. The Quest Diagnostic labs you want are: 25-Hydroxyvitamin D3 [25(OH)D3]. Quest Diagnostics Test Name: 92888 - QuestAssureD 25-OH Vitamin D (Total), LC/MS/MS CPT Code 82306. Parathyroid Hormone (PTH) Intact and Total Calcium. CPT codes 83970, 82310. Taking Benadryl (Diphenhydramine HCL) at 25 mg every four hours throughout the day for a max of 10 days might help. Just be careful and not drive as this much Diphenhydramine will make you drowsy. If you need to drive or be sharp as a tack duringu the day, wait until you're home then take 50 mg as you walk through the door and another 50 mg at bedtime. It's essential to take all the supplements in this regimen within 10 to 20 minutes after finishing the largest meal of the day. Stomach acid will be highest at this point and that helps ensure these supplements are properly broken down for absorption when the reach the small intestine. Diet and in particular sugar and wheat products (bread, pasta, crackers, cookies and pizza) should be avoided completely until you've been back CH pain free for at least a week or two. Even then I'd avoid all sugars and limit wheat products. I would also start a course of a good probiotic. Take care and please keep us posted. V/R, Batch |
Title: Re: Batch regimen recently stopped working - help Post by JT08 on Dec 2nd, 2019 at 9:30pm
Thanks, Batch. I’ve been taking the Benadryl for about 8-9 days. Only 50mg or so per day but it’s worked great. Pain free for the most part. I stopped taking it today and headaches came back. How long can I stay on the Benadryl? And is it important to be at that every 4 hours dose you mentioned even if I’m getting results with less? Thanks!
|
Title: Re: Batch regimen recently stopped working - help Post by JT08 on Dec 6th, 2019 at 12:50am
Hey Batch,
Thanks for the reply and all the great info. I’ve been at a high dose of D3 for several weeks now, up to 90K IU mixture of the D3-50 and soft gels. Should I take to higher to get a more intense loading dose for next few days? What I’m taking is just barely getting me by, headaches been back as of the last week, any time I bring it down even 10K I get hit. I’ll try taking it right after dinner. Haven’t done that yet. Gonna start trying to identify the allergy as well - wash bedding, new pillow, etc. Let me know if yo have any other thoughts. I really appreciate it. |
Title: Re: Batch regimen recently stopped working - help Post by William on Dec 9th, 2019 at 6:58am
Hello Batch,
Once again, and as always, thanks for all of your help here over the years. It is no overstatement to say that the vitamin regimen may have saved my life. I am an episodic sufferer who has benefitted greatly from the D3 regimen. I've 100% noticed the decline in frequency and severity during my episodes. It's been three years since my last episode, but I recently got hit. I immediately started the regimen and have increased to the 50k loading dose last week (I know I should have stayed on a maintenance dose, but three years, you know...) With some tinkering, especially adding 25 -50 mg of Benadryl, my KIP 5/6's have gone down to shadows, with a few exceptions. Here is my regimen: Fish Oil 2000 iu Calcium 600 (carbonate, not citrate) mg Magnesium 800 (split between am and pm) mg K2 100 iu A 2400 iu Zinc 7.5 mg Boron 1mg D3. 50,000 iu or more I went four days headache free after a KIP 7 when I started the loading dose, and everything was going great. Then yesterday, I went on a nice long hike to a waterfall with some friends, got home, and went to lunch at a Mexican restaurant. I had two draft beers with lunch and then BAM--thirty minutes later and I had the worst cluster of my life, by far. A KIP 9 going on a KIP 10 that lasted for over an hour (I do not have oxygen). I have a few questions: 1) I've recently noticed diet recommendations here on the message board. Was my attack likely triggered by the wheat/sugar in the beer and lunch? This would be a little weird, as similar lunches haven't triggered me since I started the loading dose. 2) Should I be taking more D3 as an abortive during an attack? 3) How essential is calcium citrate v. carbonate? I am going to start the B50 regimen today and add Vitamin C. Thanks again! |
Title: Re: Batch regimen recently stopped working - help Post by JT08 on Dec 13th, 2019 at 12:39pm
Hey Batch, in desperate need of some guidance here. I got my test results back this morning and was at astronomical levels of D Serum - 311 ng/mL. My calcium serum is at the very upper end but within normal range. Reminder, I've been on a very extended loading does of 90K IUs of D3 for over a month now. As soon as I pull back even 10 IUs of the D3, I get hit like clockwork either at 1130am or in the middle of the night, or both. It quickly ruins half my day. Imitrex has been a lifesaver but still not great.
As suspected, my doctor was pretty unsure of me taking these high amounts of D3 and had some pushback. He did recommend to bring the D3 way down immediately and cited possible toxicity. It's quite a conundrum because as soon as I pull back the D3, I'll be suffering on a daily basis. What else can I do? Go back to the Benadryl for the next few weeks? That helped when I took it for about 8 days at end of November. I've started 3mg of Boron. Been on B50 complex for several weeks now. I've changed the sheets, bedding, removed allergen possibilities, etc. I usually get hit with headaches for 2-3 months at a time. this is about week 7 since this latest bout came back. Is it unsafe to continue taking such high levels of D3 through the end of the year to see if I can ride it out? What else is left to try? Thanks as always for your advice. |
Title: Re: Batch regimen recently stopped working - help Post by JT08 on Dec 16th, 2019 at 7:56pm
Thank you, Batch. You're a life saver. Copy that regarding continuing the D3 at needed dose. All of this explanation and context is very comforting and interesting learning experience.
Current weight is 175, and I'm 5 ft. 11 inch. BMI is 24.5 according to an online calculator I just used. I've signed up at MyQuest and requested my results to be uploaded there. Seems like the doctor needs to approve first. I've made another appointment with an allergist. Few months ago I did food allergy test and everything came back pretty negative. No real allergies. I'll go back for environmental stuff in a few weeks, as I suspect that's what could be bothering me. Only prescription medication I'm on now is Finasteride to prevent hair loss. Take .25 mg once a day. Everything else I take is D3 regimen related. I've actually eaten pretty close to a Keto diet for several years now. So I'll tighten up the restrictions on that. And lastly I just received all the additional supplements you recommended. Starting those today. What's the mgs/per day on the Resveratrol you recommended? Inflammation is exactly what it feels like.. I'm not sure if that's the right way to describe it, but I frequently feel pressure in my head near my temples, eye, and back of skull when I'm in a cycle. It's almost like my head/brain are inflamed which has me feeling like I'm often right on the verge of another headache. Those feelings have been extra pronounced the past several weeks. And when I'm not in a cycle, they go away completely. Is there any harm in doing another 10 days of Benadryl? I'll be traveling for Christmas and will be in a house with several pets and potentially new allergens. No idea how that will affect me, for better or worse, but perhaps the Benadryl helps as a preventative of things getting worse? Thank you! |
Title: Re: Batch regimen recently stopped working - help Post by William on Dec 17th, 2019 at 6:42am
Update
As of this writing, I am in my 14th day of the loading dose regimen (50k iu/day of D3), seven days of which I’ve been using the recommended soluble D3 and methyl folate, and I have been pain free now for four days straight. In the 14 days after starting the regimen, I had 3 real bangers. Two of them were 4-hour “Why me? Woe is me!” KIP 9/10s that also included residual headaches the entire following day. (I must have been in “peak cycle”.) Needless to say, this was when I wished for oxygen. (Those two were also triggered or exacerbated by alcohol, which I have now completely cut out.) The way I describe it is: I know I’m still in cycle, as I can still feel the beast occasionally “knocking,” but the vitamin regimen has reduced this knocking to a faint, polite, gloved, old lady’s knock rather than the Viking battering ram it would otherwise be. My one question is this: I don’t have a PCP or GP doctor because I am an otherwise healthy 36 year-old and just have never (fortunately) needed a doc. Would a PCP or GP be able to order the lab tests AND prescribe the oxygen? And would one of those urgent care, doc in a box places work? Or how should I go about finding the right doctor? Thanks again! So much, so much. |
Title: Re: Batch regimen recently stopped working - help Post by Ivana on Jun 29th, 2021 at 4:33am
Good morning,
regards to all of you :) This is my firs post but I'm reading you carefully for the last three years when I self diagnosed CH later confirmed by neurologist (for more than 10 years doctors treated sinus infection). To make long story short, I've been on D3 regimen for almost a year now (started last summer when the beast hit hard on me), and I've been 9 months PF. Nice period of my life.. Now, started again.. no matter on regimen, I even tried Benadryl last 10 days + 50000 iu D3.. still hurts. Is it possible that extreme summer temperatures wake up the beast?? Guess Benadryl will not help (we have around 36 - 38° C last two weeks in Croatia) I'm desparate, don't know what to do anymore (we cannot get oxygen here, neurologist only prescribed some kind of corticosteroids but I really don't want to use these) In April I tested 25(oh), was 247 nmol/L Should I higher the doses of vitamins? Or?? Please help.. :'( Many thanks, Ivana |
Title: Re: Batch regimen recently stopped working - help Post by AussieBrian on Jun 29th, 2021 at 6:31am
G'day, Ivana. Welcome, and it's so terribly sad the beast is treating you badly.
Have you noticed previous comments about using Red Bull as a possible abortive? Tastes awful, I know, but chug-a-lugged down at the first hint of a hit it has been known to give many CHeads a bit of a break. Something to do with the caffeine/taurine mix and many people swear by it. Hanging your head under a seriously cold shower also helps many, though others swear by using a boiling hot shower instead. Some of us switch between hot and cold which seems to confuse the monster completely so it goes away. Sudden and strenuous exercise is known to be a help, though others find it to be a trigger so everything depends on what works best for you. Please let us know how you're getting on with things because we care, Brian down under. |
Title: Re: Batch regimen recently stopped working - help Post by MDR on Jun 30th, 2021 at 9:48am
hot cup of coffee first sign of pain a/c in your car breathing that in always helped me.
Mark. |
Title: Re: Batch regimen recently stopped working - help Post by Ivana on Jul 1st, 2021 at 7:49am
Thanks Brian & MDR,
Will try with Red Bull & coffee, a/c definitely makes it easier. Melatonin helped two cycles before, attacks stopped completely in a few days, but don't work anymore. >:( I'll keep with D3 & will add Benadryl for few days again. |
Title: Re: Batch regimen recently stopped working - help Post by Stefan on Aug 2nd, 2021 at 4:52pm
Hello Batch,
I am fairly new to this regimen and I am little bit confused. You mentioned above that one should usually avoid calcium supplements, since D3 dosage increases calcium blood content, but in the list of supplements, listed at the first post of the "D3 regimen thread", there is calcium (220 to 500mg/day). Perhaps I am looking at an older version of it. Also does vitamin K2 act as a calcium blood level regulator, i.e. it prevents hypercalcemia. I took high vitamin D3 doses a few years back, without any other supplements, and started having severe mental health problems, consistent with hypercalcemia, which stopped after discontinuing the high D3 dosage. I would very much wish to avoid that. Thank you very much in advance. |
Title: Re: Batch regimen recently stopped working - help Post by TheAndyT on Aug 9th, 2022 at 4:12pm
Hello Everyone, Batch!!
Been a while since I have been on here but like a lot of us....the beast brings us back to the comfort zone. I have not stoped the regimen at all since I started it years ago and I have sailed through years of being pain-free; 8 years to be exact!! For reasons unknown, the beast hit me a week ago and it hit me hard. Never in my life have I had more than one hit a day but now I am getting hit 3-4 times a day and at high KIP. I have raised my doses to the loading numbers for the past 7 days and no improvement. After reading a little, I will also order some Benadryl for now. Dunno what else to do at this point. Pain-free wishes to all! -Andy |
Title: Re: Batch regimen recently stopped working - help Post by TheAndyT on Aug 21st, 2022 at 3:53pm
Batch,
Thanks for the reply. Im not sure I understand the dosage correctly when you put it in grams so I will describe what I am doing in different measurements. First off, I will be ordering the 4 blood tests today to hopefully get them done by the end of this week. Secondly, yesterday was my 10th day on the Benadryl, I have no changes to the CH yet. I have two days since I tapered my D3 intake from the loading dose down to 20,000IU daily. I must add that I have several years taking additional supplements to the regimen. These are daily: 500mg Bromelain, 1000mg Turmeric Curcumin, 2000mg Quercetin and 3000mg Kudzu Root. I beleive that I should raise these doses temporarily? I also beleive that this is very important to point out............. I am fully vaccinated against covid-19 (two shots, plus a booster shot). Even being fully vaxxed, I contracted Covid on July 9th. I tested clean from Covid on July 20th. The Beast came back on July 28th. Coincidental? maybe. But I feel a little suspect on it all. Today will be my 25th day straight with the beast visiting me. Yesterday was hell [smiley=hammer.gif]. I will share the results of the blood work as soon as I have them available. Again, thank you for your time and guidance! Pain-free wishes to all! [smiley=heart.gif] -Andy |
Title: Re: Batch regimen recently stopped working - help Post by TheAndyT on Aug 29th, 2022 at 6:09pm
Good day, Everyone!
Batch... So I got my blood results in this morning. This is what it all looks like: HS-CRP 0.6 mg/L Calcium Serum 10.3 mg/dL PTH Intact 30 pg/mL D, 25-OH >150 ng/mL I am currently still on the loading doses of the regimen (been loading for 3 weeks) plus the full monty and added the Methyl Folate+ in lieu of the benadryl. I am still getting hit, but I feel like the intensity of the pain might be going down. They are around kip 5 to 6 on average. Your guidance is greatly appreciated. pain-free wishes to all. -Andy |
Title: Re: Batch regimen recently stopped working - help Post by Batch on Oct 9th, 2022 at 10:02pm
Hey Andy,
Sorry for the delay in responding. I've been on travel all of September. Your labs look fine. Howz the head? Take care, V/R, Batch |
Title: Re: Batch regimen recently stopped working - help Post by TheAndyT on Oct 13th, 2022 at 11:51pm
Batch,
I hope your travels were for pleasure rather than business as you well deserve! As far as the noggin; the last day I got hit was Sep 6. Nothing since. I am curious and wondering why I was still getting hit even though my labs are where they should be. I have now finally weaned back to the 10k IU maintenance dose of D3 and am doing well. Anyways; I suppose a new schedule is not needed as it seems that im keeping good track on my levels. Thanks again for the help and any advice is always welcome! -Andy |
Title: Re: Batch regimen recently stopped working - help Post by Batch on Dec 5th, 2022 at 10:08am
Hey Andy,
Howz the head now? Hope you had a wonderful Thanksgiving. We sure did. The reason you were still getting hit with a 25(OH)D3 >150 ng/mL was the elevated hs-CRP. As suspected, the hs-CRP indicated you were battling inflammation. We're not sure of the actual mechanism of action associated with inflammation triggering CH and making CH more difficult to control. I'll make a SWAG it's an immune system response where the immune system's white blood cells consume available vitamin D3 and its first metabolite 25(OH)D3 more rapidly leaving too little to control CH. We've seen this happen many times. When it does happen, the best course of action is to increase the 25(OH)D3 serum concentration with loading doses and a higher maintenance dose. SWAG = Sophisticated Wild-Ass Guess. Take care and please keep us posted. V/R, Batch |
Title: Re: Batch regimen recently stopped working - help Post by TheAndyT on Dec 10th, 2022 at 11:35pm
Batch,
Your SWAG is unmatched by any theory. The head is fine now and I had a great Thanksgiving and I'm hoping for a great Xmas and new year. I suspect that the Covid shots plus boosters may have brought back the beast for me. Although I don't advocate against the vaccines for every one reading this. So now I chose to stay away from the vaccines and continue the daily regimen....personally. every one is different and we should all adjust as such. That is my version of the SWAG. Anyways, thanks again, Batch and may the force be with you always. My best regards, Andy |
Title: Re: Batch regimen recently stopped working - help Post by Batch on Dec 11th, 2022 at 3:51pm
Andy,
You've made a sound choice based on the available credible information. Have a Very Merry Christmas and a Happy and Healthy New Year. V/R, Batch |
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