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Hey Microdosing, Great question and you're OK! There's a very simple reason why the nostril on the hit side gets the gush and stuffy during a CH. The pain and neruogenic inflammation during an active CH hit triggers the eye on the hit side to water. This starts happening between Kip-5 and Kip-7 pain levels for most CHers and the flow increases as the pain goes up. The tearing caused by CH hits ≥ kip 5 drains down the nasolacrimal ducts at the inside corner of the eye next to the nose on the hit side. The saline tear fluid exits these ducts into the nasal cavity, as its name implies. That means tears from the eye start running out the nose. The lining of the nasal cavity on the hit side reacts by swelling and this gives us the stuffy feeling. So much for today's lesson on anatomy and pathophysiology of a CH. There is a solution to this problem... For the CHers who know what I'm about to say... Wait for it... I would start taking the anti-inflammatory regimen. You can download the posted version of this CH and MH preventative treatment protocol at the following vitaminDwiki.com link. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 For reference, readers of my webpage at vitaminDwiki.com have downloaded 47,321 copies of this CH and MH preventative treatment protocol since 21 Jan, 2017. That's an average of 40 downloads a day. Word on the efficacy of this regimen is getting out. Even if you're not ready to start this regimen or you're satisfied mm are controlling your CH effectively, taking 3 grams/day vitamin C and at least 5000 IU/day vitamin D3 can help build a strong immune system. MM can't do that. Vitamin C supports your immune system. Vitamin C helps to kill viruses and reduces the symptoms of infection. It's not a COVID-19 "cure," but nothing is. It might just save your life, though, and will definitely reduce the severity of the infection. If someone tells you it's not proven, consider two things: 1. Nothing is proven to work against COVID-19, because it is a new virus First identified and named by the WHO 11 Feb Its genome first sequenced on 25 Feb, No RCTs of the COVID-19 coronavirus have been completed, but a lot have started. 2. Vitamin C has worked against every single virus including influenzas, pneumonia, and even poliomyelitis. See the following link for details. https://orthomolecular.activehosted.com/index.php?action=social&chash=a5e00132373a7031000fd987a3c9f87b.150&s=b6603c369765a26b8432c6fde3807447 Take care and take vitamin C, V/R, Batch

Hey Bee, I strongly support the use of mm and the other things discussed at this site. I've seen them work effectively up close and personal, busting CH cycles when even vitamin D3 wasn't effective. I just don't have any expertise in this area so leave that to the experts here. I also spent a year helping Dr. John Halpern, MD, get the BOL used in his study into a "Fast Track" approval process at the FDA. As a 75-year-old retired Navy fighter pilot, the disciplines needed to fly fighters at 1,000 miles an hour, fight bad guys in high-G combat maneuvering and land on an aircraft carrier day and night demanded a complete avoidance of any substance that altered my neurological functions including memory and split-second reflex response. Those disciplines are still with me today. Accordingly, I rely on vitamin D3 and its cofactors to control and prevent CH and migraines as this combination carries no mind altering baggage. Moreover, in the 9 years I've been a member here at Clusterbusters, I've seen many cases where a combination of mm and vitamin D3 had a synergistic effect of busting cycles much faster than mm or vitamin D3 could do by themselves. Take care, V/R, Batch

Vitamin D3 stimulates the synthesis of melatonin naturally.

Hey Igdc, Good comments. My experience with CH that dates back to 1994 with my first bout with CH and I've been chronic since 2005. What I've found is the severity of this disorder is compounded by vitamin D3 and magnesium deficiencies and there's a clear inverse relationship between CH frequency and serum 25(OH)D3, the serum level metabolite of vitamin D3 that's measured by lab tests. Well over 2500 CHers are now taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and cofactors to prevent their CH. The updated version of the supplements called for in this regimen are illustrated in the following photo of what my wife and I have taken daily since October of 2010. I suggest these supplements to CHers all over the world. If you add 3 grams/day vitamin C, t.i.d. (one gram 3 times a day), you'll have an effective preventative for colds and flu... and I'm confident the COVID-19 novel coronavirus as well. The last two graphics apply. On a related note, my niece has asthma and has been taking this regimen daily for the last 9 years through two pregnancies and breastfeeding. Results: two flawless pregnancies, deliveries and two exceptionally healthy babies with T-Rex immune systems. She's taken one of the Bio-Tech D3-50 50,000 IU capsules of water soluble vitamin D3 every 3 to 4 days for the last four years since she stopped all Rx meds for asthma, to keep her asthma in remission and that has proven to be very effective. Take care and please keep us posted. V/R, Batch

Hey Mark, Thank you for your service. The Redneck Reservoir bags work like a champ with aborts running around 7 minutes with the procedure outlined in my previous post. I made the one shown in the photo while salmon fishing in Pelican, AK, a fish camp with population 76 in the winter so there are no medical oxygen suppliers. Fortunately, there are lots of welders and plenty of welding oxygen. I made up two such Redneck Reservoir bags last June when an allergic reaction to mold spores kicked me out of a CH remission that had been running for over a year CH pain free. I filled these bags by sticking the tip of a cutting torch in the plastic bottle and turned on only the oxygen. It took 4 days loading vitamin D3 at 50,000 IU/day plus Benadryl at 25 mg every four hours throughout the day to stop the CH beast from jumping ugly. Even with the CH hist coming at night, they did not stop me from salmon fishing during the day... Take care and please keep us posted. V/R, Batch

Hey Marine, I'm a 75-year-old retired Navy fighter pilot and I'm on Tricare for Life as well. I've never had any problems getting M-Size oxygen cylinders or a few of the smaller E-size cylinders with a CGA-870 regulator. Ask for a CGA-870 regulator with selectable flow rates up to 25 liters/minute. If they tell you they don't have any with flow rates that high, buy one as suggested. Better yet, make yourself a DIY Redneck Oxygen Reservoir system out of a clean empty plastic Coke or Gatorade bottle (with cap) and bottom cut off, a clean kitchen trash bag, tubing from a disposable oxygen mask, some electrician's tape and some Duck Tape. The following diagram should help. When you're done building this Rube Goldberg contraption it should look like the following Redneck reservoir bag without the oxygen tubing. If you've done a good job with the tape so the seals are all gas-tight so it holds oxygen overnight without deflating, and you use the right breathing procedures, one of these Redneck oxygen reservoir systems is good for three aborts. These contraptions have zero inhalation resistance making them easier to inhale from than an oxygen demand valve. The procedure is simple. You hyperventilate with room air at forced vital capacity tidal volumes for 30 seconds then remove the cap from the Coke bottle and inhale a lungful of oxygen from the Redneck reservoir bag and replace the cap. Hold the lungful of oxygen for 30 seconds then keep repeating the complete sequence until the CH pain is gone. This usually takes an average of seven complete cycles (7 minutes). Forced vital capacity means exhale forcibly until it feels like the lungs are empty - they're not - without delay, do an abdominal crunch like doing sit-ups and hold the squeeze on every exhalation for a second. On the final exhalation hold the squeeze for three seconds. This will squeeze out a half to full liter of exhaled breath highest in CO2 content. Blowing off CO2 like this is an important part of aborting CH. If you're doing this procedure and breathing technique properly, you should start feeling a slight tingling or prickling sensation in the lower legs and feet, hands, face and lips after the 3rd to 4th cycle with room air. You may even sense a chill across the lower back above the belt line. These sensations are called parasthesia, an indication you've pushed you system into respiratory alkalosis, a temporary condition where the blood CO2 content is below normal. These sensations are caused by capillaries and microvasculature in the skin constricting. This is what we want to happen in the trigeminovascular system as it speeds up the abort. If you watched the movie The Andromeda Strain, respiratory alkalosis is what saved the baby. This is an important mechanism that also aborts CH. A low blood CO2 content means the blood is more alkaline with a higher pH than normal. This is also an important CH abort mechanism as the elevated pH triggers blood hemoglobin to have a greater affinity for oxygen and off load CO2 faster as blood passes through the lungs. The result is a super-oxygenated flow of blood to the brain and this is also an important part of the CH abort mechanism. This method of oxygen therapy as a CH abortive is just as effective as using an oxygen demand valve. I hold a patent (now expired) on the demand valve method of therapy in aborting CH. The big difference is in the amount of oxygen consumed. Hyperventilating with an oxygen demand valve until the abort will consume 250 to 300 liters of oxygen. Using the above procedure consumes ~ 25 to 30 liters of oxygen/abort. A redneck reservoir bag is a lot easier to haul around in the back seat of your car than an E-Size medical oxygen cylinder. Take care and please keep us posted. V/R, Batch

Spiny, There are two changes to the supplements listed in the posted version of this treatment protocol that will appear in the updated version I hope to have available later this month. They include switching to the Bio-Tech D3-50 50,000 IU water soluble form of vitamin D3 that's suggested at a dose of one (1) D3-50/week as the initial maintenance dose. Rationale: The Bio-Tech D3-50 is proving to be faster acting with a higher bioequivalence in elevating serum 25(OH)D3 than the same dose of the oil-based liquid softgel vitamin D3 formulations. The D3-50 is also less expensive at one 23 cent capsule a week or ~3 cents/day. Bio-Tech D3-50 https://www.amazon.com/Bio-Tech-Pharmacal-D3-50-100-Count/dp/B000A0F2B2?ref_=ast_bbp_dp&th=1&psc=1 https://www.iherb.com/pr/Bio-Tech-Pharmacal-Inc-D3-50-Cholecalciferol-100-Capsules/55186 The other change is a switch to Methyl Folate + (vitamin B complex) in place of the vitamin B 50/100 complex. Rationale: This form of Folate and B complex appears to have a higher bioequivalence in preventing CH and MH. These are also the same B vitamins called for in the Coimbra protocol used to prevent MS and other autoimmune disorders. Methy Folate + Vitamin B Complex https://www.amazon.com/Bioactive-Formulated-Pharmaceutical-Methylcobalamin-Synergistically/dp/B01MQJVHHC?ref_=ast_bbp_dp https://www.iherb.com/pr/Doctor-s-Best-Fully-Active-B-Complex-with-Quatrefolic-30-Veggie-Caps/50940?refid=1c105ef4-ca2e-4f09-bcc7-bddc10c426b9&reftype=rec Take care and please keep us posted. V/R, Batch

Hey NightOwl, CHfather is spot on with his info. I just sent you a PM with enough of the other info on this regimen to get you started. Please shoot me a PM response when you read my PM to you. Take care and please keep us posted. V/R, Batch

Hey Spiny, You can find the posted version of the anti-inflammatory regimen CH and MH preventative treatment protocol on my webpage at the following vitaminDwiki.com link: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Take care and please keep me posted. V/R, Batch

For 2019, the 30-day efficacy jumped to over 90% of CHers starting this regimen experiencing a significant reduction in CH frequency from a mean of 21 CH/week down to a mean of 4 CH/week. Better yet, over 65% of CHers starting this regimen experienced a lasting cessation of CH in the first 30 days. I attribute this increase in efficacy to the switch to the Bio-Tech D3-50 50,000 IU water soluble vitamin D3. That's the only thing that's changed since July of 2018. I know the medical evidence purists will say an open label observational study rates a low level of medical evidence. To that I say, this is not your every-day average observational study. It's been running for over 8 years with over 320 participants and the year-over-year 30-day efficacy has remained constant at ≥80% for a favorable response and ≥50% for a lasting complete cessation of CH in the first 30 days. Moreover the generalizability of these results is very good as participants have come from 35 different countries around the world. That's not to mention all the health benefits made possible by the anti-inflammatory regimen at a cost of ~ 50 cents/day or $15/month USD. The Emgality cost is $550/month and it carries some onerous adverse side effects. Bottom line... The Anti-CGRP mAbs are never going to work as they cannot pass through the blood brain barrier to reach the site of action in neuronal nuclei within the trigeminal ganglia where CGRP is expressed. At best all the Anti-CGRP mAbs can do in lower the CGRP serum concentration. Here's the math and molecular biology behind this statement. These mAbs have a molecular mass of 150 kDa (150,000 Daltons) but the fenestration (windows) through the BBB have a maximum aperture of 400 Da. That makes the monoclonal antibodies 375 time too big to pass through the BBB windows. A molecule of vitamin D3 has a molecular mass of 385 Da so it passes readily through the BBB and into neuronal nuclei to do its thing through genetic expression to down-regulate (decrease) the expression of CGRP, SP, VIP and PACAP. The Anti-CGRP mAbs only react to CGRP.

Dear Lúthien, The endocrine system and its endocrine hormones play a significant role in both cluster and migraine headache. The problem is no two women behave alike during pregnancy or while taking birth control pills. One of the best ways to get on an even playing field so to speak and get your CH under control, is to start taking vitamin D3 plus its cofactors. The first step in this process is to see your PCP/GP for lab tests of your serum 25(OH)D3, calcium and PTH (parathyroid hormone). Odds are high you're vitamin D3 insufficient/deficient. As Chers, we need our 25(OH)D3 between 70 and 100 ng/mL so be sure to ask for the acutal 25(OH)D3 measurment and not just your doctor's interpretation of the results. As the normal reference range for this lab test is 30 to100 ng/mL so most physicians will say 31 ng/mL is normal... which is true for rickets, but not CH.' Even though you've experienced a CH pain free response using a low-dosage estrogen patch, there's no guarantee it will continue. You can find a download copy of the anti-inflammatory regimen CH and MH preventative treatment protocol at the following VitaminDWiki link: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 This regimen has a wonderful efficacy with 80% of CHers responding with a significant reduction in the frequency of their CH from a mean of 21 CH/week down to a mean of 4 CH/week in the first 30 days. 52% of CHers starting this regimen experience a complete and sustained cessation of their CH in the first 30 days after start of regimen through the end of 2018. Both figures of efficacy jumped by 10% in 2019 after I started suggesting CHers switch to the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 in July of 2018. There have been no reports of hypercalcemia, a.k.a., vitamin D3 intoxication/toxicity since I began posting about the efficacy of this regimen in December of 2010. Take care and please keep us posted. V/R, Batch

Hey Vipul, The possibility exists that the sinusitis mentioned in your MRI DX is secondary to CH. In other words, the sinusitis is a direct result of multiple CH which cause all the sinus on the CH side to gush with mucus. On the other hand, it could also be just a coincidence with no real correlation. The possible involvement of the RCA (right superior cerebellar artery) with the trigeminal ganglia resulting in neurovascular conflict, mentioned in your MRI DX, is frequently associated with trigeminal neuralgia. This is where the RCA is physically wrapped around the trigeminal ganglia putting pressure on it and a creating a chaffing action that sensitizes the trigeminal ganglia stimulating pain very similar to CH. I'm a 75-year-old retired Navy fighter pilot so clearly not a doctor or qualified to read MRI imagery. That said, I read studies of CH voraciously. While there are clear cases of CH being secondary to lesions in and around the trigeminovascular complex, the majority of CH are primary. The human body is totally amazing in its capacity to heal itself if given the right nutrients. After all, it's been doing this for thousands of years before modern medicine or we wouldn't be here. I recall our family doctor telling me to remember the alphabet when it comes to vitamins (A, B, C, D, E). Take care and please keep us posted. V/R, Batch

Hey Cast Iron, I made several trips to your country between 1997 and 2003, mostly to Den Haag to work at the SHAPE Technical Centre. Den Haag was great and so was Amsterdam, but I loved Scheveningen. Great little seaside restaurants with wonderful food. Getting to your problem, I suspect you are vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your CH. Baseline lab tests by CHers reporting in this survey, before starting this regimen are illustrated in the following normal distribution curve. The normal reference range for the 25(OH)D3 lab test is 30 to 100 ng/mL (75 to 250 nmol/L). Most CHers experience a favorable response to this regimen with a mean 25(OH)D3 serum concentration around 80 ng/mL. We've made some important changes to the anti-inflammatory regimen and treatment protocol. The most significant change occurred in July of 2018 with the switch from the oil-based liquid softgel vitamin D3 formulations to the Bio-Tech D3-50 50,000 IU water soluble vitamin D3. Several of us found it faster acting with a higher bioequivalence in elevating serum 25(OH)D3 than the same dose of the oil-based liquid softgel vitamin D3 formulations. The following photo illustrates the supplements I take and now suggest to other CHers. Most CHers in Europe have found they can order these supplements through iherb.com. I just crunched the numbers from the online survey of CHers taking this regimen as of 31 December 2019. There was a significant increase in the efficacy of this regimen during 2019. Over 90% of CHers starting this regimen in 2019 experienced a significant reduction in the frequency of their CH from 3 CH/day down to 4 CH/week in the first 30 days. Moreover, 67% of CHers starting this regimen in 2019 experienced a sustained cessation of CH symptoms in the first 30 days. Although I can't say for sure, it appears this increase in efficacy is likely due to the switch to the Bio-Tech D3-50 as nothing else has changed. I track all the other CH prophylaxis and none of them come close to this level of efficacy, let alone at a cost around 50 cents/day USD with no adverse events. I've made some changes to the treatment protocol that include new target 25(OH)D3 serum concentrations and longer vitamin D3 loading schedules to reach these new targets. These changes will appear in the updated version of this treatment protocol I hope to post on my web page at vitaminDwiki.com later this month. These changes include: New TGT 25(OH)D Concentrations - New Loading Schedules Episodic CHer 80 to 100 ng/mL. - Load at 50,000 IU/day for 12 - 14 days Chronic CHer 90 to 120 ng/mL. - Load at 50,000 IU/day for 14 - 16 days Migraineurs 100 to 140 ng/mL - Load at 50,000 IU/day for 16 - 18 days It's important to understand these suggested 25(OH)D3 serum concentration target ranges and loading schedules are a starting point for the average ECHer, CCHer and migraineur. Many CCHers (like me) will require a higher 25(OH)D3 serum concentration, a longer period of loading at 50,000 IU/day and a higher maintenance dose to experience and maintain a CH pain free response. In practice, CHers can start the accelerated vitamin D3 loading schedule and stay on it until they experience a favorable response then add an extra two days at 50,000 IU/day to build a reserve then drop back to a maintenance dose of one (1) D3-50 a week. I've also added some other supplements needed by migraineurs and some chronic CHers taking this regimen that are illustrated in the following photo of what I take daily. There are other go-to supplements that can be taken in the event the above are not resulting in a favorable response, but I think you have enough to go on should you decide to try this regimen again. Take care and please keep us posted. V/R, Batch

Hyperventilation with room air until you reach respiratory alkalosis can be helpful in lowering the pain of CH but it too, does nothing to replete a vitamin D3 deficiency.

Getting cold will not replete a vitamin D3 deficiency.

Hey Mit, I just sent you a PM regarding your migraine headaches. I've a handful of migraineurs taking a modified version of the anti-inflammatory regimen. So far they're all experiencing a significant reduction in the frequency of their migraines and two are migraine pain free. I used to fly F-4 Phantoms into George AFB in the mid '70s to drop off or pick up Sidewinder missiles in a captive carry program to build up flight hours before we fired them. Take care and please keep me posted V/R, Batch

Hey Finance, I've sent you a PM that addresses your questions about the anti-inflammatory regimen with vitamin D3 and the cofactors. Please feel free to ask questions... Most CHers have them when starting this regimen... I've been doing this for 9 years. Take care and please keep us posted. V/R, Batch

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

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

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

Hey Hammered, I've sent you a PM as Spiny indicated I would. My PM covers everything you'll need to do to get started on the anti-inflammatory regimen and then some. Please keep us posted. Take care, V/R, Batch I

If used properly with hyperventilation, oxygen inhalation therapy is nearly as fast as subcutaneous triptan injections. It has no adverse side effects and again using the procedure of hyperventilating with room air at forced vital capacity tidal volumes for 30 seconds followed immediately by inhaling a lungful of 100% oxygen and holding it for 30 seconds then repeating this sequence until the CH pain is completely gone usually takes an average of seven cycles - 7 minutes consuming less than 30 liters of oxygen , ~5 cents worth of oxygen gas/abort.

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

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

Hey Scott, Yes, 19 ng/mL is low when it come to serum 25(OH)D3 serum concentrations. The normal reference range for this lab test is 30 to 100 ng/mL. Vitamin D experts will tell you any serum concentration below 40 ng/mL is low. Data collected from the online survey of CHers taking the anti-inflammatory regimen with at least 10,000 IU/day vitamin D3 plus the cofactors are illustrated in the baseline normal distribution curve for 25(OH)D3 lab results before starting this regimen. As you can see, your 25(OH)D3 serum concentration falls under this curve. As a CHer, you need to elevate and maintain your 25(OH)D3 serum concentration between 80 and 100 ng/mL in order to enjoy a CH pain free state. You can find the anti-inflammatory regimen CH preventative treatment protocol at the following link. Discuss it with your PCP/GP or neurologist then follow this treatment protocol and you'll elevate your 25(OH)D3 to a therapeutic level that will keep you CH pain free: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 I've updated this treatment protocol by suggesting the supplements illustrated in the following photo. You can order all of the above from amazon.com if you live in the US. If not, you may need to order most of these same brands from iherb.com. I've listed links at amazon and iherb.com below for each item. A. Bio-Tech D3-50, 100 water soluble 50,000 IU capsules https://www.amazon.com/Bio-Tech-Pharmacal-D3-50-100-Count/dp/B000A0F2B2?psc=1&SubscriptionId=AKIAILSHYYTFIVPWUY6Q&tag=duckduckgo-ffnt-20&linkCode=xm2&camp=2025&creative=165953&creativeASIN=B000A0F2B2 https://www.iherb.com/pr/Bio-Tech-Pharmacal-Inc-D3-50-Cholecalciferol-100-Capsules/55186 B. Kirkland Adult 50+ Mature Multi https://www.amazon.com/Kirkland-Signature-Mature-Vitamin-Tablets/dp/B00P8ZAWK0/ref=sr_1_3?keywords=Kirkland+Adult+50%2B+Mature+Multi&qid=1576305520&s=hpc&sr=1-3 https://www.iherb.com/pr/21st-Century-Sentry-Senior-Multivitamin-Multimineral-Supplement-Adults-50-220-Tablets/43845 C. Nature Made Extra Strength 400 mg Magnesium https://www.amazon.com/Nature-Made-High-Potency-Magnesium/dp/B07G2TYKR1/ref=sr_1_4?keywords=Nature+Made+Extra+Strength+400+mg+Magnesium&qid=1576305613&s=hpc&sr=1-4 https://www.iherb.com/pr/Nature-Made-Magnesium-Extra-Strength-400-mg-60-Softgels/76915. Order three (3) D. Nature Made Omega-3 Fish Oil Liquid Softgels https://www.amazon.com/Nature-Made-Omega-3-Liquid-Softgels/dp/B00KKA0G04/ref=sr_1_5?keywords=Nature+Made+Omega-3+Fish+Oil&qid=1576305953&s=hpc&sr=1-5 https://www.iherb.com/pr/Nature-Made-Fish-Oil-Burp-Less-1-000-mg-150-Softgels/40457 E. LifeExtension Super K with Advanced K2 Complex https://www.amazon.com/Life-Extension-Advanced-Complex-two-pack/dp/B00ATD4JKA/ref=sr_1_6?keywords=LifeExtension+Super+K+with+Advanced+K2+Complex&qid=1578005023&s=hpc&sr=1-6 Order two for a year's supply https://www.iherb.com/pr/Life-Extension-Super-K-90-Softgels/90368 Order four bottles for a year's supply F. METHYL FOLATE +. https://www.amazon.com/Bioactive-Formulated-Pharmaceutical-Methylcobalamin-Synergistically/dp/B01MQJVHHC/ref=sr_1_5?keywords=METHYL+FOLATE+%2B&qid=1578006730&s=hpc&sr=1-5 https://www.iherb.com/pr/Thorne-Research-Basic-B-Complex-60-Capsules/18791?refid=683bbb72-92bc-45ee-9bb0-6b7aecacf850&reftype=rec We've made some adjustments to the treatment protocol available at the link above. I say "We" as none of this would have been possible without the participation of thousands of CHers here at Clusterbusters and CH.com over the last 10 years. In a very real sense, this is your regimen and treatment protocol. Direct feedback from CHers taking this regimen is so valuable. For example, this feedback indicates the efficacy of this regimen increases with time and higher serum concentrations of 25(OH)D3 due to higher daily maintenance doses of vitamin D3. These protocol adjustments have been simple, yet effective. When I first started posting about the efficacy of this regimen in December of 2010, it was one size fits all with 10,000 IU/day vitamin D3 plus the cofactors. The first adjustment involved starting this regimen with a 2-Week or 4-Week accelerated vitamin D3 loading schedule to elevate serum 25(OH)D3 more rapidly and achieve a favorable response more rapidly. Over the next two years that loading schedule evolved to a 12-Day loading schedule taking 50,000 IU/day vitamin D3 for 12 days. It was just as effective and took less time to reach a therapeutic effect. I attribute the increase in the raw efficacy of this regimen and CH preventative treatment protocol to the switch to the Bio-Tech D3-50 and the 12-Day accelerated vitamin D3 loading schedule. My analysis of survey data through the end of 2018 indicated the mean 25(OH)D3 serum concentration for Episodic CHers experiencing a favorable response to the anti-inflammatory regimen was 80 ng/mL while the mean 25(OH)D3 serum concentration for Chronic CHers experiencing a favorable response to the anti-inflammatory regimen was 90 ng/mL. Clearly, one size does not fit all... Accordingly, I've made the following changes to the vitamin D3 dosing strategy regarding the target 25(OH)D3 serum concentration ranges and accelerated vitamin D3 loading dose duration ranges. Episodic CHer Target: 80 to 100 ng/mL - Load at 50,000 IU/day for 12 - 14 days Chronic CHer Target: 90 to 120 ng/mL - Load at 50,000 IU/day for 14 - 16 days Migraineur Target: 100 to 140 ng/mL - Load at 50,000 IU/day for 16 - 18 days It's important to understand these suggested 25(OH)D3 serum concentration target ranges and loading schedules are starting points for the average CHer. Many of us (like me) will require a higher 25(OH)D3 serum concentration, a longer period of loading at 50,000 IU/day and a higher maintenance dose to experience and maintain a CH pain free response. At the completion of these loading schedules reduce the vitamin D3 intake to an initial maintenance dose of 10,000 IU/day with the oil-based liquid softgel vitamin D3 formulations or if you're taking the suggested Bio-Tech D3-50, you'll need to take one (1) of these 50,000 IU water soluble vitamin D3 capsules a week. Doing the math, that works out to an average dose of 7,140 IU/day. Given the higher bioequivalence of the D3-50, this should be sufficient for most CHers. Changing the dose is a simple matter of adding or subtracting a day or more between doses. Take care and please keep us posted. V/R, Batch