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Everything posted by Batch

  1. Batch

    Hip Surgery

    Start, taking 10,000 IU/day vitamin D3 now. Surgery like yours will deplete vitamin D3 rapidly. Take care, V/R,Batch
  2. Batch

    Is ch linked to dental work?

    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
  3. 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
  4. 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
  5. 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
  6. Batch

    Is there something about Australia?

    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
  7. Batch

    Shadows back from pizza

    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.
  8. Batch

    Is there something about Australia?

    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."
  9. Batch

    Describing CH to non-believers

    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
  10. 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
  11. Batch

    Insomnia while on Vitamin D3 regiment?

    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
  12. Batch

    Insomnia while on Vitamin D3 regiment?

    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
  13. Batch

    Question for batch

    Hey Dana, The Adult 50+ Mature Multi contains most of the vitamin D3 cofewactors/conutrients. It just doesn't have enough magnesium or any vitamin K2. There are additional supplements that can be added if there's no response to the above supplements. They include vitamin C as the human genome and that of all primates lost the gene for the enzyme needed to synthesize vitamin C from carbohydrates. None of the other animals that synthesize their own vitamin C have cardiovascular disease... That's a thinker... Accordingly, 4 to 6 grams/day vitamin C is a good dose. The other supplements frequently added by CHers are CoQ10 and Turmeric (Curcumin). Take care and please keep us posted with your response to this regimen. V/R, Batch
  14. Batch

    strange changes to my clusters

    Hey Mark, Any 25(OH)D serum concentration above 100 ng/mL will be assessed as "High". Please don't let that bother you. The technoids (not real vitamin D3 experts) who set the upper limit for the 25(OH)D normal reference range knew that 200 ng/mL was likely safe, but where a few people start experiencing hypercalcemia (too much serum calcium) so they wanted to be uber safe and conservative so set the upper limit at 100 ng/mL. If you're still getting hit with CH with your 25(OH)D at 120 ng/mL, you may need a higher vitamin D3 dose and a 25(OH)D serum concentration up around 140 ng/mL to achieve a favorable response. For reference, over the last three years I've kept my 25(OH)D serum concentration between 130 ng/mL and 188 ng/mL taking between 20,000 IU/day and 40,000 IU/day vitamin D3 to stay CH pain free depending on the pollen and mold spore count. My PCP has no problem with my 25(OH)D serum concentration this high as long as my serum calcium concentration remains within its normal reference range... and it has. Be sure to ask for serum calcium and PTH when you go back in for lab tests at the next VA facility. Take care and please keep us posted. V/R, Batch.
  15. Batch

    Floaters in eye related to clusters

    JH, On a related note, they discovered I had an autoimmune eye disorder called uveitis when I had the detached retina. As a result of this diagnosis, I took part in a clinical trial of a monoclonal antibody called daclizumab at the National Eye Institute, NIH, Bethesda, MD. The informed consent document for this clinical trial of daclizumab was filled with a long list of frightening adverse side effects, but the thought of my retina rejecting me and going blind was a bigger fear so I signed the consent form. Long story made short, the daclizumab worked, but it destroyed my immune system in the process and I was plagued with all the listed adverse side effects until I started the anti-inflammatory regimen in October of 2010. I've passed annual ophthalmology eye exams ever since. It's clear to me and my ophthalmologist, the vitamin D3 has kept my eyes healthy and rebuilt my immune system. Take care and please keep us posted. V/R, Batch
  16. Batch

    Floaters in eye related to clusters

    Hey JH, Floaters happen with age. They occur when the eyeball starts to elongate from a spherical shape to a grape shaped structure. This elongation causes the vitreous humor, the clear jello inside the eye, to put stress/tension on the retina causing microbleeds... the floaters you're seeing. Floaters happen to people without CH. See your PCP for an ophthalmology consult. You need a thorough eye exam... The incidence of spontaneous retinal detachment also goes up as we age... Been there, done it, had a detached retina and posterior vitrectomy to prove it. Take care, V/R, Batch
  17. Batch

    Looking for advice

    Hey Clusterwife06 and Maddie3, Take a look at the link titled "D3 Regimen for CH' in the Theory and Implementation section. It has everything you'll need to take control of CH. You can also click on the following link, it will pull up this same post. Take care and please keep us posted. V/R, Batch https://clusterbusters.org/forums/topic/6194-d3-regimen-for-ch/
  18. Batch

    Why can't not being in pain be a good thing?

    Sorry to sound like a stuck record... (Hmmm I guess that phrase dates me...) but starting the anti-inflammatory regimen with the 12-Day accelerated vitamin D3 loading schedule at 50,000 IU/day vitamin D3 for 12 days followed a maintenance dose of 10,000 IU/day of vitamin D3 and the rest of this regimen has a high probability of ending your angst by preventing your CH. The following chart illustrates the favorable response rate by day after starting the anti-inflammatory regimen for 80% of CHers who start this regimen. This figure improves the longer CHers stay on this regimen. That said, I frequently forget that trying to convince some CHers running from pillar to post, in and out of the frying pan and fire trying to dodge the next CH, that this is a very safe and effective method of controlling CH is like trying to herd cats. Then I remember that logic has little meaning when the CH beast is jumping ugly every hour... Please forgive me. I'll be here if you need help. V/R, Batch
  19. Hey Brain on Fire, Good on you... That much exposure to the UVB in direct sunlight puts you in the same category as SoCal life guards.. Their mean 25(OH)D serum concentration is around 50 ng/mL with a few up to 80 ng/mL. That said, if the CH beast is still jumping ugly... that's not high enough. Hope to see you in Dallas. I'll be waiting at the bar. Take care, V/R, Batch
  20. G'Day Dana, ZipLock bags work great! That is unless you've a mob of Roos going through your goodies... The accelerated vitamin D3 loading schedule works best if taken daily. Some Vitamin D3 loading schedules call for a single oral dose of 600,000 IU of vitamin D3... The problem you run into is you also need a constant supply of magnesium. Taking more than 1000 mg/day is a sure fire way for osmotic diarrhea. Take care, V/R, Batch
  21. OK, Brain on Fire, Do you spend 20 to 30 minutes 5 days a week in the mid-day sun clad in speedos with no sun block? Arms, legs and neck don't amount to much cutaneous vitamin D3 as measured by a lab test for 25(OH)D above 30 ng/mL even in SoCal and FL. As CHers we need our serum 25(OH)D up around 80 ng/mL for a favorable response with a significant reduction in the frequency of our CH. Many of us need an even higher 25(OH)D serum concentration between 80 and 120 ng/mL at times even higher for a complete cessation of CH. You can always get the lab test for 25(OH)D and prove me wrong... The standing bet is a beer and a shooter at the next Clusterbusters Conference in Dallas. Have I got a taker? Take care and please keep us posted. V/R, Batch
  22. Hey Dana, Just tell your PCP you've been taking 50,000 IU/day vitamin D3 and need to check for toxicity... He'll freak out and order the labs for 25(OH)D, calcium and PTH ASAP! In reality, you could probably take that much vitamin D3 for a couple months and still not push your serum calcium above its normal reference range... That's called hypercalcemia a.k.a., vitamin D3 intoxication/toxicity... but you don't need to tell your PCP that... Take care, V/R, Batch
  23. Hey Dana, Climate is one factor when it comes to a geographic prevalence for CH, but latitude is the biggie. The farther North, the higher the prevalence. Skin type and more specifically the amount of dark pigmentation is also a significant factor. That said, there are also demographic cohorts near the equator where obtaining direct sunlight is not an issue yet some of these people also have a higher prevalence for CH. The reason for this is air conditioning. For example, there's a greater prevalence for CH and migraine in Finland per 100,000 than just about any other country in the world. Here we are talking about a country that crosses the Arctic Circle where the incidence of direct sunlight is lowest and a national genome with the least amount of skin pigmentation. i.e., very pale skin. The thinking here is as humans migrated North from equatorial regions they tended to give birth to children over many generations with less pigmentation. People who did not evolve with less pigmentation during the migration north were unable to produce sufficient cutaneous vitamin D3 so did not have sufficient bone mineralization. This resulted in a smaller pelvic girdle and women with this condition tended to die in child birth removing them from the evolving genome. Hence, survival of the fittest. Take care, V/R, Batch
  24. Batch

    Any input

    Hey Voc Teacher. Howz the head? Vitamin D3 loading typically needs to be a minimum of 5 to 7 days at 50,000 IU/day when at higher 25(OH)D serum concentrations around 80 ng/mL to have a significant effect on CH frequency. Take care, V/R, Batch
  25. Batch

    Benadryl for CH

    Hey J, Good question. CHers taking the anti-inflammatory regimen CH preventative treatment protocol with 10,000 IU/day vitamin D3 who were not responding by the end of the first week on this regimen have found allergic reactions were likely the cause of their non-response. A week to 10-day course of a first-generation antihistamine like Benadryl (Diphenhydramine HC) at 25 mg every four hours throughout the day has helped most of them. I don't have any data for CHers taking only the Benadryl (Diphenhydramine HCL). Take care, V/R, Batch