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Hey Blue X 3, Welcome to Clusterbusters. We know what you've been going through and the good news is it doesn't need to be that way. You've got two effective options... Busting and Vitamin D3. The busting experts will be along shortly so I'll cover the vitamin D as you're likely vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your CH. Download the anti-inflammatory CH preventative treatment protocol from the following VitaminDWiki link and take it to your PCP. When you get there, discuss starting this regimen and ask for the lab test of your serum 25(OH)D. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 This is not a joke and I don't sell anything. I've been providing information outreach to migraineurs and CHers on the benefits of this regimen and vitamin D3 since December of 2010. If you've any doubts about starting this regimen, click on the following VitaminDwiki link. It will take you to a page at that site that's all about my work with CHers taking this regimen with vitamin D3 and the cofactors. http://is.gd/clustervitd If you’re still in doubt about starting this regimen, please read through the following posts by other CHers who started this regimen. I have hundreds more just like them. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/798/#798 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1393027277/2/#2 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/1425/#1425 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/1465/#1465 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404/278/#278 Please feel free to ask questions... Most CHers have them when starting this regimen... I'm here to help. Take care and please keep us posted, V/R, Batch

Melissa, A CHer with active CH nursing a 7 month old baby... BINGO!!! You really need to be taking 10,000 IU.day vitamin D3 plus Omega-3 fish oil and all the vitamin D3 cofactors. If not, your baby needs a minimum of 400 IU/day supplemental vitamin D3. Yes... I can hear the wheels turning... Who is Batch and what are is qualifications for saying this? Good question... Although my answer may not be sufficient for you to follow the suggestion as I'm a 73 year old retired US Navy fighter pilot with a degree in Chemistry, 24 years as a CHer (chronic since 2005) and full time student of vitamin D3 since October of 2010. That's when I discovered that 10,000 IU/day vitamin D3 plus Omega-3 fish oil and all the vitamin D3 cofactors prevented my chronic CH... I've been CH pain free ever since. This regimen is so important for good health and among other benefits, it builds a T-Rex immune system, that I have my entire family taking it and none of them have CH. Of particular interest to you are my daughter and niece. Both have been taking this regimen for years. My daughter gave birth to her second child in July. This baby and his sister, now 3 years, were both bathed in maternal vitamin D3 at a dose of 10,000 IU/day since conception. Both pregnancies and deliveries were flawless. Moreover their neuromotor, physical and learning development while breastfeeding at this maternal vitamin D3 dose are nothing short of phenomenal. My niece took this same regimen through her pregnancy and is still taking it like my daughter while breastfeeding. Orrin, 5 months and Fred, a.k.a., Winefred, 3 years... Yes, I'm a doting old grandfather... but I've never seen more healthy babies... and Fred speaks English and Hochdeutch... I credit their excellent health and rapid development to their mother taking 10,000 IU/day through pregnancy and while breastfeeding... Fred also takes vitamin D3 at a dose of 50 IU per pound of body weight a day... She's a 40 pounder so that works out to a vitamin D3 dose of 2000 IU/day... and not the 600 IU/day recommended by bureaucrats at the National Academy of Medicine, formerly called the Institute of Medicine (IOM). Now to the experts with the sheepskins in the appropriate fields and years of professional experience with vitamin D3 studies who suggest 10,000 IU/day during pregnancy and while breastfeeding... Bruce W. Hollis, PhD, Professor of Pediatrics, Biochemistry and Molecular Biology, and Director of Pediatric Nutritional Science at The Medical University of South Carolina, Charleston, SC. The Institute of Medicine has set the “upper limit” of recommended intake at 4000 IU. Is it safe for an adult to take 6400 IU? "The IOM setting a limit of 4,000 IU per day was subjective and not based on any trials. The Endocrine Society guidelines state that 10,000 IU per day is safe. In my own experience with our trial and several other trials in which I have been involved (involving tens of thousands of patients), not a SINGLE adverse event has been observed due to vitamin D intake. I personally take 6,000 IU per day and have for years, and my daughter just had a child and is taking 10,000 IU per day while lactating (going on a year now). Totally safe." Hmmm... How about that... A highly qualified PhD, Professor of Pediatrics, Biochemistry and Molecular Biology and Director of Pediatric Nutritional Science at The Medical University of South Carolina, Charleston, SC recommends a maternal vitamin D3 dose of 10,000 IU/day... and that's what his daughter has been taking while breastfeeding... "Totally Safe." See the following link for more details: https://kellymom.com/nutrition/vitamins/vitamin-d-and-breastfeeding/ This was an interesting study where one group of 74 breastfeeding mothers took the "Old School" recommended prenatal vitamins and minerals with 400 IU/day vitamin D3 during pregnancy and while breast feeding... After 7 months of breastfeeding their mean serum 25(OH)D was only 79 nmol/L (36.6 ng/mL). 25(OH)D lab tests of their babies indicated 78% of them were vitamin D3 deficient until provided with 400 mg/day supplemental vitamin D3. The other group of 78 breastfeeding mothers took the same prenatal vitamins and minerals with 400 IU/day vitamin D3 PLUS another 6,000 IU/day vitamin D3. After 7 months of breastfeeding their mean serum 25(OH)D concentration was 151.2 nmol/L (60.5 ng/mL) and more importantly, their babies had a mean serum 25(OH)D concentration of 106.9 nmol/L (42.8 ng/mL) WITHOUT supplemental vitamin D3. Grassrootshealth recommends a maternal vitamin D3 intake during breastfeeding of 6400 IU/day... as a minimum... to ensure breast milk contains ≥ 400 IU/liter 25(OH)D. See the following link for more details. https://grassrootshealth.net/blog/vitamin-d-for-breastfeeding-mother/ Grassrootshealth.net also has a wonderful 25(OH)D home blood spot test kit for $70, no Rx needed and you'll get the results back in less than two weeks. I've used their DIY 25(OH)D test kits for years. See the following link for details. https://grassrootshealth.net/project/daction/ So there you have it... You can continue suffering from CH... or you can download the anti-inflammatory regimen, take a copy to your PCP, discuss it, then ask for the 25(OH)D lab test. When the results of that lab test come back indicating you're vitamin D3 deficient, start this regimen and follow it carefully. I'd go one step further and take your baby to the pediatrician and ask for the same 25(OH)D lab test. If you do this, your CH will become a thing of the past and your baby will be getting more than sufficient vitamin D3 while breastfeeding. Over the last seven years, at least 4 ladies with CH started this regimen and continued it through pregnancy and while breast feeding... Results... No standard CH medications with all the side effects, no CH and 4 very healthy babies. Take care and please keep us posted. V/R, Batch

Hey Melissa, We know what you're gong through... and if it is cluster headache (CH)... the good news is it doesn't need to be that way. You're likely vitamin D3 and magnesium deficient and these deficiencies are contributing to the frequency, severity and duration of your headaches. See your PCP for lab test of your serum 25(OH)D. This is the serum level metabolite of vitamin D3 that's used to measure its status. The normal reference range for this lab test is 30 to 100 ng/mL. Data from the online survey of 215 CHers taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 indicate they had a mean baseline 25(OH)D serum concentration before start of regimen of 23 ng/mL. As a CHer, we need our 25(OH)D serum concentration in a range between 80 and 120 ng/mL in order to remain CH pain free. Download a copy of the anti-inflammatory regimen CH preventative treatment protocol from the following VitaminDWiki link and take a copy with you when you see your PCP for the 25(OH)D lab test. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Take care and please keep us posted. V/R, Batch

Hey Mac, Thanks for the feedback. 10,000 IU/day may not be enough vitamin D3 until you build your serum 25(OH)D concentration to the therapeutic level (80 to 120 ng/mL), As you're still ghosting... I'd take 50,000 IU for two to three days then bump the vitamin D3 maintenance dose to 15,000 IU/day. That will help elevate your serum 25(OH)D a little faster and also help prevent the ghosting. Be sure to drink 2.5 liters of water a day... Take care and thanks again for the feedback. V/R, Batch

Hey Mac, The following chart of 25(OH)D time course response to dose of vitamin D3 tells the story... A vitamin D3 dose of 10,000 IU/day is far better than 5000 to 6000 IU/day and for some CHers like me, 15,000 to 20,000 IU/day vitamin D3 is needed for a pain free response. Take care and please keep us posted. V/R, Batch

Douglass, How much vitamin D3 are you taking and did you start this regimen with the 12-Day accelerated vitamin D3 loading schedule? If not, you should be able to take 50,000 IU/day vitamin D3 for six to eight days then drop back to the maintenance dose of 10,000 IU/day for three weeks then see your PCP for labs of your 25(OH)D, total calcium and PTH. Take care and please keep us posted. V/R, Batch

Hey Leo, I call my grand daughter "Fred" a.k.a. Winefred... 3. She's been bathed in maternal vitamin D3 since conception as I encouraged my daughter to start the complete anti-inflammatory regimen in 2012. I'm also familiar with the lion bit... but not with a linkage to CH... My middle name is Lyon... Your 25(OH)D serum concentration at 343 nmol/L (137 ng/mL) is fine as long as your serum calcium remains within its normal reference range and your PTH is in the lower third of its normal reference range. Be sure to talk with your PCP about getting these two lab tests at the next opportunity. For reference, I'm a chronic type CHer and have maintained my 25(OH)D at an average of 140 ±50 ng/mL for the last 3 years. Be sure to start the vitamin K2 and I wouldn't worry about the vitamin A.. Just eat a few carrots a week and you'll be getting all the beta carotene you need. I'm not a fan of lithium... Minimal benefits and maximum side effects made it a bad choice with too much risk for me to even consider. If you haven't already done so, download a copy of the anti-inflammatory regimen at the following link and be sure to discuss it with your PCP when you go in for the additional lab tests. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Take care, have a Very Merry Christmas and Happy New Year free of CH. V/R, Batch

They're not the same. Although the actual demand valve is the same, the high pressure hose has a different fitting that prevents it from being used on an oxygen regulator equipped with a DISS fitting. You can order an Ultraflow oxygen demand valve from bpr at the following link but you'll still need a good oxygen regulator with a single DISS fitting. http://www.bprmedical.com/ultraflow/oxygen-demand-valve?connector=9 This oxygen demand valve will run around $500 plus another $250 to $350 for a good regulator so this is a very expensive (albeit a very effective) way of aborting CH. The Redneck oxygen reservoir system I designed (photo below) is far more cost effective at less than $5 to build DIY and almost as easy to use if you also use the latest procedure I developed. This procedure entails hyperventilating at forced vital capacity tidal volumes with room air for 30 seconds then inhale a lungful of oxygen and hold it for 30 seconds. 4 to 7 complete sequences like this is usually sufficient to abort most CH. Moreover, as the adult lungs hold ~ 5 liters at forced vital capacity tidal volumes, you'll consume 20 to 35 liters of oxygen per abort. I've done studies with the Ultraflow oxygen demand valve. The average CH aborts at respiration rates that support hyperventilation consume 200 to 400 liters of oxygen. The best course of action is to start the anti-inflammatory regimen with at least 10,000 IU/day vitamin D3. If you follow the treatment protocol taking all the vitamin D3 cofactors, this regimen should prevent your CH completely or at the very least, reduce the frequency of your CH to 3 or 4 per week. I have one of the Ultraflow oxygen demand valves and it stays in a plastic bag unused except when I do a 25(OH)D burn down test by stopping vitamin D3 intake until I get hit... I do this at least once a year and usually alternate between the oxygen demand valve and Redneck Reservoir system. Take care and please keep us posted. V/R, Batch

The name is Bundaberg... a.k.a., Bundy or Bundy OP (Over Proof) a.k.a., Rocket Fuel... A delightful Demerara Rum I get from Australia. Bundy and Coke was the drink for Americans in Australia during WW II. I float an ounce and a half on top of a perfect Mai Tai parfait. It will knock your socks off . Too much and you come down with amnesia... at least that's my excuse when She who must be obeyed, points out I've done something stupid... If things get dull, you just set it on fire... Demerara rum was first distilled from cane molasses in Guyana on the banks of the Demerara River in 1650 when British cane growers were introduced to stills and a handsome profit from the molasses that had been dumped in the river up until then. Five years later there were 300 sugar cane plantations, 300 sugar mills and 300 stills lining the Demerara river. The Royal Navy got into the act in 1677 when the Admiralty approved issuing a daily ration of rum to ship's crews of all rates. By 1880 the unique flavor of aged blended rums from the Demerara region of Guyana made it a named class of rum sold worldwide by British distillers. One of the oldest and finest of Demerara rums is El Dorado. A 750 cc bottle of 15 year old El Dorado Demerara rum will set you back $50 and a 25 year old El Dorado goes for $500. Needless to say this is fine sipping rum never mixed with Coca•Cola... So much for the story of Bundaberg rum...

I'm dyslexic at times... particularly after too much rum... When that happens... I go with the flow... BTW I had more than my share of problems with daclizumab in an open label study at NIH... Had I known how effective vitamin D3 can be and how bad the mAbs can be... I would never have signed the study consent form.

There are 4 RCTs registered in cinicaltrials.gov using mAbs (monoclonal antibodies - 3 for Fremanezumab and one for Galcanezumab) as the intervention for CH and more are likely to follow. Three of the mAbs tested with migraine had an appetite for calcitonin gene-related peptide (CGRP) and a fourth that plugs the CGRP receptor. IMHO... the use of mAbs is still focused on the treatment of symptoms (neurogenic inflammation and the pain caused by CGRP) and not on one of the underlying causes. If you follow the basic antibody antigen mechanism of action where an antibody attaches to an antigen (in this case CGRP), marking it for destruction by killer cells and larger white blood cells, the cow (CGRP in this case) is already out of the barn... To my way of thinking, this means that monoclonal antibodies that attack CGRP or block its receptors will never be fully effective as they're playing a catch-up game from the get go... Using an objective statistical measure of efficacy called the Number Needed to Treat (NNT) to prevent one migraineur from having a sever (not complete cessation) migraine headache attack, the mAb Erenumab has an NNT of 6. That means you need to treat 6 episodic migraineurs to prevent one episodic migraineur from having a sever attack. In other words... Erenumab was ineffective for 5 out of 6 episodic migraineurs (83%) treated. In reality, any NNT of 10 or less is considered "good." See the following link for more details: http://journals.sagepub.com/doi/abs/10.1177/0333102417732504?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%3dpubmed In comparison, Torpiramate and Propranolo each had NNTs of 5 in preventing one episodic migraineur from having a severe attack. Erenumab was equally effective for chronic migraineurs with an NNT of 6. In comparison, BOTOX had an NNT of 9 and two RCTs for Torpiramate had NNTs of 13 and 4. We won't know the efficacy of mAbs in prevneting CH until some time in 2018 or longer. FDA approval following phase 3 studies will still be needed so two years to market as a CH prophylactic is an optimistic guess at this point. Moreover, as these are man-made, genetically engineered foreign antibodies with no physiological means of production from within the human genome, they will need to be replaced periodically (like monthly) in order to maintain a therapeutic serum concentration... The cost of these mAbs is still unknown at this point... However, I strongly suspect it will be in the same price range per month as Humira (Adalimumab)... $100 to $185 out of pocket copay ($5 if AbbVie covers the injection) to $6.600 without assistance. For reference, vitamin D3 plus Omega-3 fish oil and the vitamin D3 cofactors has a mechanism of action that downregulates/suppresses the expression of CGRP at the genetic layer... In other words, vitamin D3 bars the barn doors to prevent the cows (CGRP) from escaping the genetic layer. Using the above statistical method of expressing efficacy, the anti-inflammatory regimen has a raw NNT of 3 or 2 in preventing one CHer from having a CH... Numbers count... Take care, V/R, Batch .

Hey CF, Try taking this regimen with the evening meal. Start with just the vitamin D3 and magnesium the first day then add the rest one day at a time until you find the culprit making you hurle... Be sure to drink at least 2.5 liters of water a day... Take care, V/R, Batch

Hey Bearcat, I'll echo the welcome to Clusterbusters and add, welcome to the anti-inflammatory regimen. You're off to a good start. Be sure to start the 12-Day vitamin D3 loading schedule at 50,000 IU/day vitamin D3 for 12 days. This is the fastest way to elevate your serum 25(OH)D into the therapeutic range of 80 to 100 ng/mL which is the therapeutic range for episodic and chronic CHers to experience a favorable response to this regimen. I realize that 600,000 IU sounds like a lot of vitamin D3 for people new to vitamin D3 therapy. That said, there are several RCTs where a single oral dose of 600,000 IU, (1.5 mg) of vitamin D3 was given with no adverse reactions and all study participants experienced an average gain in 25(OH)D serum concentration of 60 ng/mL above their starting serum concentration in 3 days. If you've a copy of the latest treatment protocol for this regimen, you should have a copy of the graphic below illustrating the favorable response times by day after starting this regimen. It will give you an idea when to expect this regimen will start working to prevent your CH. As you can see, the majority of CHers starting this regimen respond in the first week after starting this regimen and better than 75% respond within the first two weeks. At this point be sure to take all the supplements listed in the protocol and drink at least 2.5 liters of water a day. Having developed this regimen in October of 2010, I usually suggest that all the supplements be taken with the largest meal of the day to ensure maximum vitamin D3 absorption. However, as it takes roughly six hours for oral vitamin D3 to reach a maximum serum concentration or (Tmax ), It may be beneficial to take the vitamin D3 around 11 AM to noon in order to ensure the vitamin D3 serum concentration is highest and had time to reach target neurons within the trigeminal ganglia in sufficient concentration to have a therapeutic effect during the 7 to 9 PM time frame of your first CH hit of the evening. Over the last year, several CHers who didn't respond to this regimen during the first week found that taking 25 mg of Benadryl (Diphenhydramine HCL) four times a day and 50 mg at bedtime for a week to ten days, experienced a favorable response with a significant reduction in the frequency of their CH from an average of 3 CH per 24 hours down to 3 or 4 CH/week or a complete cessation of CH symptoms. The rationale for taking this first-generation antihistamine centers on its capacity to cross the blood brain barrier to block histamine H1 receptors in neurons within the trigeminal ganglia and the fact that we're constantly exposed to allergens. Although most people say they don't have allergies, they can be subclinical with no outward or obvious symptoms, but they're still there, pumping out enough histamine for CHers to react with onerous CH. Accordingly, if you've not experienced a significant reduction in the frequency, severity or duration of your CH within 4 to 5 days after starting this regimen, it may be helpful to start the week to 10-day course of Benadryl. Again, you're off to a good start in gaining control over your CH. Stick with this regimen and I'm confident you'll be happy you did. Take care and please keep us posted. V/R, Batch

The following link to a post I made in 2012, should help explain how and why a baking soda tonic helps prevent CH. Seltzer Water and the Baking Soda Tonic both produce the same bicarbonate ion, HCO3- per the following chemical formulas, but that's where the similarity ends. Seltzer Water has a pH between 3 and 4 due to the carbonic acid formed when CO2 is dissolved in water under pressure. A solution of sodium bicarbonate (Baking Soda Tonic) has a pH of 9.3 making it far more alkaline. In fact, the carbonate concentration of the baking soda tonic is 100 times that of the carbonic acid making it more effective in elevating a low systemic pH and in the process, preventing CH. Seltzer Water (Carbonic Acid) has the chemical formula CO2 + H2O <-> H2CO3 <-> H+ HCO3- Baking Soda Tonic (Sodium Bicarbonate) has the chemical formula NaHCO3 <-> Na+ HCO3- http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/1025/#1025 In case you're wondering... I majored in Chemistry... Take care, V/R, Batch

Hey Dan, You can download a copy of the anti-inflammatory regimen CH preventative treatment protocol with vitamin D3 at the following link. Just paste it in your browser. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 It would help if you could see your PCP for a lab test of your serum 25(OH)D and discuss this regimen before starting it. That way you're both singing from the same sheet music when the lab results come back. However, as nearly all CHers in cycle have a low serum 25(OH)D concentration and it looks like obtaining this lab test will take more than a few days, I would start it as soon as I picked up the needed supplements. You can always get this lab test and others listed in this treatment protocol 30 days after starting this regimen. If you have any questions or problems, sing out... Take care and please keep us posted. V/R, Batch

Hey Kris, The anti-inflammatory regimen may help relieve some of the pain you experience with your constellation of headaches. All trigeminal autonomic cephalalgias (TACs) have at least two things in common... Sufferers tend to have a low vitamin D3 status from an insufficiency to a deficiency. TACs also share the same basic mechanism of action involving neruogenic inflammation and pain caused by calcitonin gene-related peptide (CGRP) and/or Substance P (SP). Please shoot me a PM so we can discuss options. In the mean time, please download a copy of the anti-inflammatory regimen treatment protocol. You can do this by clicking on the following link or copy and paste it in your browser. In addition, try to see your PCP for a lab test of your serum 25(OH)D. The treatment protocol explains this test and others you may want to get. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Take care and please keep us posted. V/R, Batch

Most readers have seen my posts about the benefits of vitamin D3 above and beyond preventing CH. Although I've discussed taking vitamin C as an adjunct to vitamin D3 in preventing CH, there's a much bigger picture in the benefits of vitamin C if we take enough. Spend five minutes watching the video at the following link. It will be well worth the time and tell you more than any post I could write. Preventing illness and disease with vitamin C. https://www.youtube.com/watch?time_continue=2&v=7kGo0DfxQss (5:21) For guests, plug the following in your browser and replace the (dot) with a period. www(dot)youtube(dot)com/watch?time_continue=2&v=7kGo0DfxQss This video features two-time Nobel Laureate Linus Pauling talking about preventing illness and disease with vitamin C. As you'll see in this video, he took 18 grams of vitamin C a day along with 10,000 IU/day vitamin D3. He was 92 at the time of this video was made in 1993... Dr. Pauling was attacked by critics of his studies and papers citing the capacity of vitamin C to prevent and treat cardiovascular disease. Of course he had two more individual Nobel prizes than any of his critics. (One for chemistry and the other for Peace (nuclear disarmament) - No other Nobel Laureate shares this honor...) Moreover, when he died at 93 of a misdiagnosed perforated ulcer, he had outlived most of his critics. When asked how much vitamin C should people take, Dr. Pauling replied, "If you're still having colds, you're not taking enough." "Practically all human beings are suffering from a sort of sub-clinical form of Scurvy that is called ordinary good health, but should be called ordinary poor health." Linus Pauling "The amount of vitamin C we take to keep from dying is the RDA. The amount of vitamin C needed for optimum health is much higher" Linus Pauling These last two quips clearly illustrate is disdain for the Institutes of Medicine (IOM) DRI initiative that began in June 1993 with proposed RDAs for vitamins that were too low then and continue to be low now... i.e., an RDA of 60 mg/day for vitamin C and 600 IU/day for vitamin D3. We all need a minimum of 2 to 3 grams (1 gram = 1000 mg) of vitamin C/day. If at risk for cardiovascular disease or breastfeeding, we need 4 to 5 grams of vitamin C/day along with 2 to 3 grams of L-Lysine. Kids need a minimum of 10 mg per pound of body weight per day... Most Children's multivitamins contain only 60 mg. It dissolves just fine in orange juice. If you think you're getting sufficient vitamin C from your diet, think again. A half cup of raw sweet red or yellow bell peppers contains only 100 to 140 mg of vitamin C and they have the highest vitamin C content of all fruits and veggies... Take care, V/R, Batch

J, I totally understand your predicament. You need to be head-zup teaching class and the CH beast makes that difficult to impossible depending how ugly it jumps. It's your call on what to take to get through classes. Do what you need to do... Having the CH return at progressively higher severity attacks as you taper off the prednisone tells us you're still fighting a significant inflammation. Adding a 1000 mg tablet of vitamin C along with the Benadryl (Diphenhydramine HCL) every 4 hours has worked nicely for CHers in similar situations... A 1000 mg/day of Turmeric (Curcumin) can also be helpful in keeping the CH beast in check as it's a natural anti-inflammatory agent as well. I would also bump the vitamin D3 dose to 40,000 IU/day for 5 days then drop back to 20,000 IU/day as a maintenance dose to see what happens. Doing this will likely elevate serum 25(OH)D by another 20 ng/mL. Again, that's no biggie... I've maintained my serum 25(OH)D at 140 ±50 ng/mL to stay CH pain free for the last few years and that includes jumping on the Benadryl (Diphenhydramine HC) for a week to 10 days during allergic reactions at least twice a year since spring of 2015. Make sure you're drinking 2.5 liters of water a day... In all the hassle and confusion of a CH flurry, with the CH beast tapping out a tarantella on your eye several times a day... the need to drink enough water falls in a crack... I keep my water in an empty 2.63 liter NON-GMO Simply Orange plastic bottle and drain it completely every 24 hours. If you do all this and the CH beast continues to jump ugly, we need to take a look at diet. No sugars of any kind and no artificial sweeteners including Stevia. No gluten, peanuts, corn, soy, pasta or any food from a can or jar unless it says "NON-GMO" and "No Sugar Added." I try to cook and eat whole foods from the "Organic" produce section along with free range/organic beef, lamb, chicken and eggs. I've a freezer full of wild caught, fresh frozen vacuum sealed salmon, cod and halibut fillets from my Alaska fishing trips. The NON-GMO food types are gaining in popularity. It's only been in the last year or two that governments in Europe have contemplated a ban on foods containing Glyphosate... the organophosphate herbicide and dessicant made by Monsanto under the label "Roundup". In October the EU banned Monsanto lobbyists from entering the European parliament during deliberations on a ban of all Glyphosate products. What Monsanto has done is diddle (genetically modify) the genes of selected crops to make them resistant to Glyphosate, giving them the title "Roundup Ready." This allows these crops to be sprayed with Roudup to kill the weeds and not the genetically modified crops. In theory, this sounds like a good idea... However, given the basic laws of diffusion, these plants take up the Glyphosate so it is present in all Monsanto GMO crops including: corn, wheat, oats, barley, beans, legumes, fruits some nuts and the list goes on... Monsanto has claimed these genetic modifications only affect plants and not mammalian genomes including the human genome. The Glyphosates in these crops pass through the body unchanged so do not affect mammalian physiological functions. While this is true, it fails to account for the human microbiome... large colonies of friendly (symbiotic) bacteria and biota living in our GI tracts. They are members of the plant kingdom... Accordingly, the microbiome is affected by Glyphosate... and it kills off these friendly colonies of bacteria and biota... As roughly 70% of the human immune system is centered around our GI tract and microbiome, Glyphosate can and will damage or destroy our immune system with continued exposure. Lab tests conducted by Anresco were done on 29 foods commonly found on grocery store shelves. According to the report, glyphosate residues were found in: General Mills' Cheerios at 1,125.3 parts per billion (ppb) Kashi soft-baked oatmeal dark chocolate cookies at 275.57 ppb Ritz Crackers at 270.24 ppb (Uh Oh). While parts per billion (ppb) might sound like a very minute quantity... researchers have found Roundup can cause liver and kidney damage in rats at only 0.05 ppb, and additional studies have found that levels as low as 10 ppb can have toxic effects on the livers of fish. The other, more insidious property of organophosphates like Glyphosate is they do not break down and will lay around for years until taken up by another GMO plant. That means the GMO Roundup ready crops used as feed will result in Glyphosate being concentrated in the animals eating that feed... butter, eggs, cheese, farmed (shrimp, prawns, tilapia, catfish, cod, and salmon), chicken, beef, lamb, pork, bacon and sausage... Oh No... Why all this discussion on Glyphosate... Simple, cluster headache has many triggers... No sense in adding more when they can be avoided for the most part. Sooo... I stick with wild caught fish and shrimp, free range critters, and NON-GMO organic crops. I even buy NON-GMO highfructos-free ketchup Take care and please keep us posted. V/R, Batch

Amon10, There's likely a good reason why 89-90% of CH attacks hit while sleeping if you're an ECHer in cycle or a CCHer... even if you're working swing or graveyard shifts. For starters, I've found several studies indicating the CH syndrome is pH sensitive. More on this later... Secondly, during sleep, our respiration rate, lung tidal volume and alveolar ventilation drop to their lowest levels while still on the good side of the air-grass barrier... Basic respiratory physiology tells us that under these conditions, our blood chemistry changes as follows: The arterial partial presser of carbon dioxide (PaCO2) elevates significantly and at the same time our arterial partial pressure of oxygen (PaO2) drops significantly. This combination represents a perfect storm for CHers. The high PaCO2, termed hypercapnea, translates to a drop in arterial blood pH below the normal range (7.32 to 7.42), making it more acidic in the chemical reaction where carbon dioxide, the byproduct of normal metabolism, combines chemically with water in the blood essentially creating carbonic acid as illustrated in the following chemical equation, CO2 + H20 <-> HCO3 + H. Blood gas chemoreceptors in the medulla oblongata (brain stem) sense the elevated PaCO2 content and lower arterial pH then signal control centers in the medulla and pons to adjust the respiration rate, increasing it slightly, the heart beat to increase slightly and vasculature to dilate in order to increase the loss of CO2 from the lungs. These are some of the basic and more rapid homeostatic mechanisms the body uses to maintain pH in the normal range. The following chart illustrates the four phases/stages of sleep we go through on a cyclic bases during a typical eight hours of sleep. While we're awake in a resting state, we have an average minute volume of lung ventilation with inspired air of 7.66 liters/minute. During steady state Non-Rapid Eye Movement (NREM) sleep, our breathing is regular, both in amplitude and frequency. Steady NREM sleep has the lowest indices of variability of all sleep stages. The minute volume of lung ventilation decreases by 13% in steady stage II sleep and by 15% in steady slow wave sleep (Stage III and Stage IV sleep). At Stages III and IV, the average minute volume of lung ventilation of inspired air drops to 7.18 liters/minute. That's enough drop in the minute volume to increase PaCO2 by 3-7mmHg, shift PaO2 lower by 3-9mmHg and SaO2 drops by ≤ 2%. The increase in PaCO2 translates to a drop in arterial pH to 7.32 and lower. While that may not seem like much, it translates to a much lower pH in tissues throughout the periphery and in particular the nervous system. That spells trouble for CHers with a hypersensitive trigeminovascular system as it sets the stage for the CH beast to jump ugly at the slightest provocation. Where CHers get into more trouble is during REM sleep. This is where respiration rates become Irregular, breathing with sudden changes in both amplitude and frequency at times interrupted by apneas (stopped breathing) lasting 10–30 seconds. The overall net affect is a drop in the minute volume of lung ventilation to an average of 6.46 liters/minute, 15% lower than the 7.66 liters/minute of air inspired while awake in a resting state. This drives arterial pH even lower below 7.32 increasing blood acidity to the point it can easily trigger the CH beast to jump ugly. Getting back to CH being sensitive to pH... Several studies have found a lower than normal pH triggers the release of vasoactive intestinal peptide (VIP) from the gut and the release of calcitonin gene-related peptide (CGRP) from the dorsal ganglia. Under normal conditions, for otherwise healthy people, this results in vasodilation to help increase the flow of CO2 to the lungs. For ECHers in cycle and CCHers, it's a different story. This is where VIP and CGRP trigger neruogenic inflammation and the CH beast to jump ugly giving us pain we know as cluster headache. If you look at the sleep stage chart, you'll see this happens between an hour and two hours after falling asleep. This same sleep stage pattern occurs three more times during the remainder of an 8 hour sleep cycle... Sound familiar? That was a long-winded explanation why and when we get hit during sleep... One of the better solutions to this problem for an ECHer in cycle and all CCHers, is to sleep in a recliner chair when the CH frequency is high, so the head is elevated 8-10 inches above the heart. This causes the heart to work harder pumping blood up to the brain. The increased work load translates to a slightly higher respiration rate keeping the PaCO2 and arterial pH closer to normal. This lowers the potential for the CH beast to jump ugly while sleeping. When you do get hit, jump on oxygen therapy at flow rates that support hyperventilation, i.e., an oxygen flow rate of 15 to 25 liters/minute. An oxygen flow rate of 40 liters/minute results in even faster aborts. Alternatively, you can try the latest oxygen therapy procedure where you hyperventilate with room air for 30 seconds at forced vital capacity tidal volumes then inhale a lung full of 100% oxygen and hold it for 30 seconds. Four to seven cycles like this are usually sufficient to abort a CH. This procedure also consumes a lot less oxygen from 280 liters at a flow rate of 40 liters/minute down to 28 liters... If you think about it... this method of oxygen therapy triggers the reverse in blood gas chemistry of what occurs during sleep. Intentionally hyperventilating blows off CO2 from the lungs faster than it's generated through normal metabolism. This causes PaCO2 to drop elevating arterial pH to 7.42 and above making it more alkaline. The elevated pH causes blood hemoglobin to have a greater affinity for oxygen which elevates PaO2 even further and in the process, super-oxygenates the flow of blood to the brain. This results in vasoconstriction and rapid oxidation of CGRP, the wonderful combination that aborts CH more rapidly and reliably than sucking oxygen from a non-rebreathing oxygen mask at 7 to 12 liters/minute. An even better solution is to start the anti-inflammatory regimen CH preventative treatment protocol. You can download a copy at the following VitaminDWiki link: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 To date, readers of this VitaminDWiki website have downloaded 3,939 copies of this treatment protocol since 21 January of this year. Take care and please keep us posted. V/R, Batch

MG, The link you posted is to the abstract of this survey. I was posting data from a poster presentation Dr. Rozen made at the American Headache Society annual meeting in 2009. As one of the unlisted co-authors of this survey's questionnaire, I also have the raw data and took part in its analysis. The figures I posted above are as detailed and accurate as possible. I understand your comments on "Average time to correct diagnosis" but the percentages in these two responses came from two separate survey questions which account for their totals being different than what you expected. The rules we used in the analysis were to report directly "As Is" to avoid any post hoc bias, so did not allow us to "interpolate" then report. Take care, V/R, Batch

Tpos, All, Conclusions from the 2008 survey of 1134 CHers by Dr. Todd Rozen, MD FAAN, that clearly apply to this discussion: Some of the results from the United States Cluster Headache Survey provide new clinical information on the characteristics of CH. 1. Eye color is not predominantly hazel but rather blue or brown 2. Female CH patients do not have CH triggered by alcohol as frequently as men 3. Weather changes trigger CH in more than 35% of CH sufferers 4. Auras occur in about 20% of CH patients (which has been documented) but aura duration is shorter than that seen in migraine and female CH aura is very short at 5 or less minutes 5. Bilateral CH pain occurs in 8% of CCH patients 6. All CH preventives are found to be effective in less than 50% of the United States CH population and 70% plus of CH patients have not tried most of the currently recognized CH preventive treatments 7. In the United States 50% of CH patients are not currently seeing a neurologist Take care, V/R, Batch

Brianh. One of the best answers to your question comes from a survey of 1134 CHers conducted by Dr. Todd Rozen, M.D. FAAN October - December 2008. 1134 individuals completed the survey (816 male, 318 female). 868 patients had episodic CH (male: female 2.9:1) while 266 had chronic CH (male:female 1.8:1). A. Age of Onset: 71% had their first ever CH at 30 years of age or younger, 35% 20 years of age or younger, while 20% of CCH started after age 40 years vs 10% ECH - 45% of female CH patients had age of onset 20 yrs of age or younger vs 32% of male CH patients B. Eye Color: Predominant eye color in cluster patients was blue 33%, brown 33% and hazel 21%. Brown eye color was the most common in ECH while blue eye color was the most prevalent in CCH. No difference in eye color distribution in male and female CH patients C. Diagnosis: CH diagnosis was typically initially made by a general practitioner or a general neurologist (non headache specialist) . - Average time to correct diagnosis was usually either less than 1 year (25%) or 10 years plus (22%). Pain location - 49.1% right-sided - 44.1% left-sided - 3.1% bilateral pain: CCH 8.3% vs ECH 1.5%. - 30.5% stated that pain has changed sides since onset of CH - 8% stated that pain shifted sides during an individual CH attack Hope this helps, Take care and please keep us posted. V/R, Batch Edited to add: There may be other good answers... That said, from my 22 years experience with CH, the only thing consistent about them is their inconsistency... In other words, what you're experiencing is normal SOP for cluster headaches.

Hey J, Off hand, I'd say you're doing great and it appears the vitamin D3 loading schedule worked as advertised. The average gain in 25(OH)D serum concentration during the vitamin D3 loading schedule is 10 to 12 ng/mL for every 100,000 IU of vitamin D3 when starting around 30 ng/mL. Using that formula, you gained roughly 78 ng/mL. Adding that to your starting 25(OH)D serum concentration, we'll assume to be 29 ng/mL we get 107 ng/mL as your new total... That's close enough. At the end of this loading schedule, we drop back to an initial maintenance dose of 10,000 IU/day. 30 days after start of regimen schedule another set of labs with your PCP. You'll need labs for your serum 25(OH)D, total calcium and PTH (Parathyroid hormone). If you're CH pain free at that point taking 10,000 IU/day and your 25(OH)D is 80 to 110 ng/mL, I wouldn't change a thing. Regarding your 25(OH)D being above 100 ng/mL, it's no big deal. The normal reference range for 25(OH)D uses an overly conservative upper limit of 100 ng/mL. As 25(OH)D is a poor biomarker for vitamin D3 toxicity, going above 100 ng/mL to even 150 ng/mL or higher is NOT an indication of vitamin D3 inoxication/toxicity. If there was such a relationship, it would likely be well above 200 ng/mL. There are a number RCTs concluding this to be the case. For reference, I've maintained a 25(OH)D serum concentration over the last three years of 140 ±50 ng/mL. My PCP just looks at my lab results and smiles saying... "Your vitamin D3 is elevated... as usual... but your total calcium is normal and PTH is low so I guess you know what you're doing controlling your CH this way." Accordingly, (for peace of mind if you're still concerned), what I would do is see my PCP for lab tests of serum total calcium and PTH. As long as the serum total calcium is within its normal reference range of 8.5 to 10.5 mg/dL, and PTH is in the lower third of its reference range, there's no vitamin D3 toxicity. Otherwise, I'd wait for 30 days after start of regimen for these lab tests. Prednisone has a slight negative effect on vitamin D3 metabolism. Once you've completed the taper, the shadows should diminish. Good move staying on the Benadryl at 25 mg every 4 hours during the day and 50 mg at bed time. I would do this for at least another week... 3 times a day was not enough for me. I've also taken 12.5 mg of the Children's Liquid Benadryl (Diphenhydramine HCL) allergy medicine and found it just as effective if taken every 4 hours as the tablet form. It also worked great in aborting shadows if you hold the liquid in your mouth and not swallow for 3 to 4 minutes as a buccal (between lower lip and gums) or sublingual (under the tongue) application. That's easy to say as the liquid form is terribly sweet and you'll be tempted to swallow it. You'll know when to taper off the Benadryl when you reach the 5 hour mark between doses and there are no shadows. At that point I extend the dosing interval to every 6 hours for a day or two, then every 8 hours, then 12 hours, then none... As long as there are no shadows at the new dosing interval, press on to the next longer dosing interval. If you remain CH pain free (that includes no shadows) for >24 hours after the last dose of Bendadryl (Diphenhydramine HCL), you'll know that it's the vitamin D3 that's preventing your CH. Again, I think you're doing great! Take care and please keep us posted. V/R, Batch .'

Brianh, Nobody knows what causes CH. Even the high priced, highly published CH expert neurologist give us the Italian salute as they're clueless when it comes to the cause of CH. Based on the feedback from several hundred CHers taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and its cofactors to prevent their CH, I'm inclined to say a vitamin D3 deficiency plays a role in the pathogenesis of CH, but I wouldn't go so far as saying this deficiency is the cause. I do know that 83% of CHers who start this regimen experience a significant reduction in the frequency of their CH from an average of 3 CH/day down to 3 CH/week. 54% of CHers who start this regimen experience a complete cessation of CH symptoms. These figures come from year-over-year compiled data from an online survey of 215 CHers taking this regimen that's been running since December of 2011. One of the many beneficial side effects from taking this regimen is its capacity to quell anxiety and panic attacks associated with CH. You can download a copy of this CH preventative treatment protocol at the following link. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Take care and please keep us posted. V/R, Batch

Hey Atama, Your home oxygen therapy prescription should read "Oxygen therapy at 15 to 25 liters/minute with non-rebreather mask for cluster headache." Please let us know when you get the HOOF kit. There's a new oxygen therapy procedure that works very well and rapidly to abort your CH. You'll need it until you get started on the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and the cofactors. Take care, V/R, Batch