Batch
-
Content count
361 -
Joined
-
Last visited
-
Days Won
49
7 Followers
-
Start, taking 10,000 IU/day vitamin D3 now. Surgery like yours will deplete vitamin D3 rapidly. Take care, V/R,Batch
-
Batch,
I wanted t let you know that I started your D3 regimen back in July 2016. It took about 4 weeks before anything happened and although I was discouraged, because some have reported relief much quicker, I stuck with it. I have not had a CH in nearly 3 years! In the decade prior to starting the regimen, I had never gone more than 15 moths without a cycle. I have had many shadows over the past 3 years but never had a CH materialize.
I have found that, for me anyway, it really does not matter the brand of vitamin that I use. So long as they are the 5,000 IU D3 and 500mg of Magnesium.
I just wanted to share on here, to everyone, and thank you. You have changed my life in a way that I can never repay.
Here's to many more years of relief! Thanks, buddy!-
SECA,
Thanks for the update. I just replied to your post over at CH.com.
Take care,
V/R, Batch
-
-
-
-
Hey Dana, Infections of any kind can affect the frequency of CH. Gingivitis can also occur even when people have a good dental practice brushing daily. The problem is usually diet. Sugars and starches metabolize in the mouth to feed bacteria responsible for gingivitis. Avoiding sweets, brushing after meals, and high doses of vitamin C at 4 to 6 grams/day can do wonders. Take care, V/R, Batch
-
He Greg, See your PCP/GP for a lab test of your serum 25(OH)D concentration. It's a safe bet your 25(OH)D serum concentration is < 40 ng/mL. Once they've completed the blood draw for this lab test, start the anti-inflammatory regimen treatment protocol and the pending CH cycle will be a non-event. See the following VitaminDWiki link to download a copy of the treatment protocol. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Take care and please keep us posted. This O2 saga has legs. V/R, Batch
-
Greg, Although the trajectory appears favorable in obtaining home oxygen therapy, the process in obtaining it is getting curiouser and curiouser. Was the Medicare rep you spoke with local or back at CMS HQ in Maryland? Take care, V/R, Batch
-
Hey Greg, Having studied this topic in detail with several experts since 2006, I'm well aware of your problem obtaining home oxygen therapy as an abortive for your CH. I suspect your Rx for oxygen therapy wasn't written properly. The Rx must clearly state oxygen at a flow rate of 15 to 25 liters/minute with a non-rebreathing mask for cluster headache. Otherwise, home oxygen providers are spring-loaded to assume the Rx is needed to treat COPD and ask for blood oxygen saturation test results, as you've already discovered. The Rx should also state Administer STAT for at least 15 minutes up to 12 times/day with Refills for six (6) months for episodic CH or refills for one (1) year for chronic CH. In addition, your doctor can also get very specific by using the appropriate Dianostic Treatment and Healthcare Common Procedure Coding System (HCPCS) codes: Diagnostic and Treatment Codes: ICD-9-CM Diagnosis Codes: Episodic Cluster Headaches – 339.01 Chronic Cluster Headaches – 339.02 ICHD-II Codes: Episodic Cluster Headaches – 3.1.1 Chronic Cluster Headaches – 3.1.2 ICD-10 NA Codes: Episodic Cluster Headaches – G44.01 Chronic Cluster Headaches – G44.02 Healthcare Common Procedure Coding System (HCPCS) Codes for Home Oxygen Therapy: Equipment: E0424-E0425 Stationary compressed gaseous oxygen system (M-Size cylinders at home) E0430-E0431 Portable gaseous oxygen system (E-Size cylinders when not at home) Contents: E0441 Oxygen contents, gaseous, 1 month’s supply = 1 unit Modifiers: QG - Prescribed amount of oxygen is greater than four liters per minute (LPM) Accordingly, for an episodic CHer needing home oxygen therapy as a CH abortive, the Rx should read: “Oxygen therapy at flow rate of 15 to 25 lpm with non-rebreathing mask as abortive for episodic cluster headache. Administer STAT for 15 minutes up to 12 X per day - ICDM-9 339.01/ICDH-II 3.1.2/ICD-10 G44.02/HCPCS - E0424-E0425, E0430-E0431, E0441 - 12, QG.” For a chronic CHer, the Rx should read: “Oxygen therapy at flow rate of 15 to 25 lpm with non-rebreathing mask as abortive for chronic cluster headache. Administer STAT for 15 minutes up to 12 X per day - ICDM-9 339.02/ICDH-II 3.1.1/ICD-10 G44.01/HCPCS - E0424-E0425, E0430-E0431, E0441 - 6, QG.” If the Rx is written this way, you beat the dirty rotten bastards at their own game using their own rules. Moreover, there's no way the home oxygen provider can confuse this Rx for COPD. Give your neurologist a copy of this post. If the home oxygen provider makes any changes to this Rx, be bold, remind them "it's against the law to change an Rx without consulting with the physician who wrote the Rx. Then ask for the name of the Physician who has attempted to change the Rx so you can report that physician to the State Medical Board legal department. Rationale, A strong offense is the best defense and telling them this usually puts them back on their heels. What's the name of your medical insurance provider and state? In many cases you can go over the Internet and look up the policy regarding "coverage" (they pay) for oxygen therapy. Most medical insurance companies do cover home oxygen therapy for cluster headache. That said, if you're on MEDICARE and do not have supplemental medical insurance that covers home oxygen therapy for cluster headache, don't waste your time, you'll need to take up Oxy-Acetylene welding and buy your own welder's O2 cylinder. (Just don't tell the welding supply people how you intend to use it.) Oxygen therapy for a CHer on MEDICARE is not covered because the unelected idiot weasel bureaucrats at the Centers for Medicare & Medicaid (CMS/OCQ) have made a most egregious non-coverage determination in 2010 (a no coverage rule so they don't have to pay for the oxygen) for home oxygen therapy for cluster headache sufferers on MEDICARE. This is another example of Big Government run amuck. They had a lot of help. If you follow the money, you'll find that Big Pharma does not want you to use oxygen therapy as a CH abortive and instead buy one or more of their patented pharmaceuticals costing upwards of $100 a pop, so they paid Lobbyists on K-street to write legislation for idiot members of Congress, who couldn't write a coherent sentence if they tried, that makes it more difficult for a physician to prescribe home oxygen therapy than write an Rx for opiates. Moreover, in order to get this legislation passed, Big Pharma pays its K-street lobbyists to make donations to the applicable Political Action Committee (PAC) for corrupt members of Congress so they will vote in favor of this terrible legislation. If you've any questions, just let me know. There are no rules in a knife fight... and I'm a cranky old Navy fighter pilot... who loves a fight like this. Take care and happy hunting. V/R, Batch
-
xBoss, Changing geographic regions to prevent CH is much too drastic... It may work, but it's a lot easier and far less costly to take 10,000 IU/day vitamin D3 for an 80% probability of success in controlling your CH. If you take the Bio-Tech D3-50 50,000 IU water soluble "micelized" vitamin D3 at 21 cents/capsule and take one (1) every 5 days for an average dose of 10,000 IU/day, the average daily cost of your vitamin D3 is 4 cents/day or ~ $15/year . Some CHers get by with one of these Bio-Tech D3-50 capsules a week, an average vitamin D3 dose of 7,000 IU/day for 3 cents/day or $11/year. The rest of the anti-inflammatory regimen cofactors and conutrients run around 45 cents/day. The entire clutch comes in around 50 cents a day or $183/year... About the cost of taking your wife out for a movie, dinner and drinks. This regimen makes good sense or good cents no matter how you look at it. And then there are all the wonderful health benefits with no adverse side effects... That's a no brainer... Take care, V/R, Batch
-
The culprits are wheat products and carbs... Wheat products trigger allergic reactions and carbs blow you out of ketosis... In simple terms, "Eating's Cheating" while on a keto diet if you're snitching pizza.
-
It's called air conditioning. Edited to Add: I had an interesting exchange with Dr. Cicero Coimbra, MD, PhD, on his high dose vitamin D3 protocol for his MS patients. The starting vitamin D3 dose is 1000 IU vitamin D3 per Kg body weight per day. At 80 Kg, I would be taking 80,000 IU/day vitamin D3 if I was on his treatment protocol. When I asked why so many people had MS in Sao Paulo, Brazil where the Latitude is -23.5º North, about the same distance South of the equator as Key West, FL is North of the equator, so they should be getting lots of cutaneous vitamin D3 from the sun, he replied "They all have the same problem." When I asked what problem was that? He replied, "Air conditioning."
-
A comment and a question on your regimen:
First, I am a convert! 33 yrs as an episodic sufferer where my cycles are now either every other year or perhaps every year. Went on the regimen last year along with Aimovig (and my usual verapamil) and it seemed to get better, quicker. This year I was noticing the shadows creeping in and jumped back into the regimen and ...knock on all the wood .... shadows are at bay and cycle has not kicked in. While I would love to see a clinical research institute verify your research, I am nonetheless so very thankful for leading the way and helping so many people out.
Second, and apologies if it is covered elsewhere many times but - just had my 25 OH D serum levels tested and I am right at 80 ng/ml. Any advise on how to adjust the regimen to now maintain those levels and not go too high?
thank you!
-
Hey Dreamer,
Thank you for the back-brief. I'm always happy to hear another CHer has found the anti-inflammatory regimen effective in preventing their CH. Your serum 25(OH)D is Spot On at 80 ng/mL. All you need to do is stay on the complete anti-inflammatory regimen at 10,000 IU/day vitamin D3 plus all the cofactors year round!
The normal range of 25(OH)D serum concentrations among 257 CHers responding to this regimen are illustrated in the following normal distribution curve. This data comes from the study that's been running since December of 2011. This is the longest running study of its kind in assessing the effectiveness of vitamin D3 as a CH prophylaxis.
As you can see, the mean 25(OH)D serum concentration among the 209 CHers experiencing a favorable response is 80.1 ng/mL where they experienced an 80% reduction in the frequency of their CH from an average of 3 CH/day down to 3 CH/week in the first 30 days and the 50% of CHers taking this regimen who experienced a complete cessation of all CH symptoms in the first 30 days.
It's best to stay on this regimen year round even if you're an episodic CHer. Your serum 25(OH)D will drop by 14 ng/mL each month you don't take the 10,000 IU/day vitamin D3. As you're episodic and you've stopped taking this regimen after your last cycle, your 25(OH)D serum concentration will have dropped below the pain free threshold when your next cycle comes around. When that happens, the CH beast will jump ugly again... CCHers don't have a choice so take this regimen year round. We call taking this regimen daily a way of life... A very good and healthy way of life at that.
Unless you've already done so, be sure 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 do have a question for you. Are you still taking the Amovig? As a member of the American Academy of Neurology, I stay abreast of all the anti-CGRP monoclonal antibody (mAb) studies. I've spoken to a molecular biologist about these mAbs and he just laughed... There's no way these mAbs can pass through the blood brain barrier (BBB). Its windows are only 400 Daltons in size, a measure of molecular mass.All of the anti-CGRP mAbs have a molecular mass of 15,000 Daltons so are 37 times too big to pass through the BBB. That means these anti-CGRP mAbs cannot get to neurons within the trigeminal ganglia where CGRP is expressed in the brain and the leading cause of the neurogenic inflammation and pain we know as CH. That also means any therapeutic effect (and it's not all that great) from taking these mAbs is due to a reduction of serum CGRP concentration.
Vitamin D3 has a molecular mass of 385 Daltons and 25-Hydroxy Vitamin D3, a.k.a., 25(OH)D has a molecular mass of 400 Daltons. Accordingly, both pass through the BBB and into neurons within the trigeminal ganglia where they are hydroxylated to 1,25(OH)2D3, the genetically active vitamin D3 metabolite that down-regulates the expression of CGRP to prevent our CH.
So much for your lesson in molecular biology... Thank you again for the update.
Take care and please keep me posted.
Hugs. Peter
-
Batch,
Last cycle I took 3 doses of Aimovig while ramping up on the D3 regimen. Something seemed to work and I had a decent amount of relief until I was off cycle. No way of attributing with certainty the relief to D3, Aimovig, the insanity of the beast or the natural end-of-cycle. This time around I am only using D3...and the cycle seems (fingers crossed) not to be kicking in...but I won't know for sure for a few weeks.
..best to you..
-
Dreamer,
It was the vitamin D3. The dirty little secret Big Pharma doesn't want you to know is the anti-CGRP monoclonal antibodies are too larger to pass through the blood brain barrier so cannot go to the site of action within the nuclei of neurons within the trigeminal ganglia. If the Aimovig provided anything, it was to reduce serum CGRP. Unfortunately that is after the fact as CGRP is experssed from within the sensory neurons creating the pain of CH....
Hugs, Peter
-
-
Hey Paul, When you see the doctors today, ask for the lab test of your serum 25(OH)D. 25 Hydroxy-Vitamin D is the first metabolite of vitamin D3 that's used to measure its status... It's axiomatic if you're having an active bout of CH... you're vitamin D3 deficient as illustrated in the following graphic from the online survey of 257 CHers. This chart illustrates the normal distribution of lab results for 25(OH)D before starting the vitamin D3 regimen. The normal reference range for this lab test is 30 to 100 ng/mL. Any value less than 30 is insufficient/deficient. 80% of CHers who start this regimen respond with an 80% reduction in the frequency of their CH when their 25(OH)D serum concentration reaches 80 ng/mL. 50% of CHers who start this regimen experience a complete cessation of CH symptoms in the first 30 days after starting this regimen. If they're hesitant or unwilling to give you this lab test, just tell them you've been taking vitamin D3 at 50,000 IU/day then watch their faces. Take care and please keep us posted V/R, Batch
-
-
CH vs Migraine headache --from someone who has both.
Batch replied to john2000's topic in General Board
If you want some insights into the commonality of migraine and cluster headache, download and absorb the following link... It will make you an expert on the topic. Keep in mind this paper was written during the hype and mania over anti-CGRP monoclonal antibodies.... We know better now that these mAbs are neither silver bullets or all that effective, just an expensive way to expose yourself to some onerous adverse side effects. Take care, V/R, Batch https://www.researchgate.net/publication/327810063_Migraine_and_cluster_headache_-_the_common_link Abstract Although clinically distinguishable, migraine and cluster headache share prominent features such as unilateral pain, common pharmacological triggers such glyceryl trinitrate, histamine, calcitonin gene-related peptide (CGRP) and response to triptans and neuromodulation. Recent data also suggest efficacy of anti CGRP monoclonal antibodies in both migraine and cluster headache. While exact mechanisms behind both disorders remain to be fully understood, the trigeminovascular system represents one possible common pathophysiological pathway and network of both disorders. Here, we review past and current literature shedding light on similarities and differences in phenotype, heritability, pathophysiology, imaging findings and treatment options of migraine and cluster headache. A continued focus on their shared pathophysiological pathways may be important in paving future treatment avenues that could benefit both migraine and cluster headache patients. Take Care, V/R, Batch -
Insomnia while on Vitamin D3 regiment?
Batch replied to CantBeWittyMyHeadHurts's topic in General Board
Hey CBWMHH, Most modern digital cameras have both low light and time lapse video functions. Set up a camera pointed at you with these functions enabled at bedtime. You might find something. Take care and please keep us posted. V/R, Batch -
Insomnia while on Vitamin D3 regiment?
Batch replied to CantBeWittyMyHeadHurts's topic in General Board
Hey CBWMHH, I checked the online survey database of 300 CHers... No comments about insomnia. In fact, most comments about sleep indicated it was better with vitamin D3. Dr. Stasha Gominak recommends a good vitamin B complex tablet daily to help with sleep. I've met her... She's the real thing. https://drgominak.com/ What are your sleep patterns? Do you take naps during the day? Do you feel rested when you get up? Take care, V/R, Batch -
Hello Batch,
I just wanted to write and thank you. I wanted to let you know how my CH husband is doing, because I think we owe you a debt that can never be repaid. His story: From June 2014-early October 2014, my husband suffered yet another Episodic Cluster Cycle. Prior to this, he had been having cluster cycles every 2-3 years starting as far back as his service in the Navy (1977-84). In late August 2014, we tried Pete Batcheller's Vitamin D3 regimen, which reduced the severity of his attacks, and within weeks of the start of the Vitamin D3 Regimen, he was PF. We didn't know, at the time, if this was a natural end to his cycle, or if it was the Vitamin regimen. Five years have now passed, and he has been PF, faithfully taking the Vitamin D3 maintenance as listed on the Vitamin D3 Wiki (I asked him once "How do you swallow all those pills at once?" and he said "I just pretend it's a great big meatball." )This is the longest pain free period he has had since we've been married. We are both 58, we have 4 children, and we don't talk about CH anymore. He just takes his vitamins. My only regret is that because of the timing, and our desperate action to try the D3 Regimen as soon as we heard about it, we were not able to be a part of your research and study (he did not have a pre-regimen test and strongly prefers not to mess with what is working). I wonder how many out there never participated in research, and yet are finding success with the Vitamin D3 regimen.-
Hey CHWife,
Thanks for the feedback. I'm always glad to hear another CHer has found this regimen keeps them CH pain free. In regards to your question, I estimate at least 2000 CHers have started this regimen since December of 2010. The online survey of CHers taking this regimen has recorded a little over 300 completed and submitted surveys out of 600 surveys started. That works out to roughly 30% who started this survey and 15% who completed it.
One of the important lessons learned over the last 8 years is if the CHers is still experiencing a few CH... the vitamin D3 dose and resulting 25(OH)D serum concentration isn't high enough. The following chart from this survey illustrates favorable responses up to 150 ng/mL. To have a 25(OH)D serum concentration that high requires a daily vitamin D3 intake between 30,000 and 40,000 IU/day.
It's still not too late to take this survey. They all help.
Take care and please keep me posted.
V/R., Batch
-
I will keep that tip in mind, because we live every day with a tentative glimpse at the future, always keeping the an unexpected appearance of CH in the back of our minds. He is maintaining with the regimen, using 10,000 IU of D3, but if he gets any indication of a cycle, we'll up that dosage, probably returning to the two week loading schedule, and go from there. If it's not too late to take the survey, I will speak with him about it. I think we are at a point that we can say with confidence that the Vitamin D3 Regimen has made a difference, and is a successful preventative for him. When all is said and done, you made a difference. Thank you. Would you please direct me to the link for the survey? I can't find it.
-
CHWife,
My pleasure...
To start this survey, click on the following link:
http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c5ce971022f6Take care and hugs,
Peter
-
