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Being CHH does suck but like Jon said it is more like high and low cycles within it. I am stuck in a higher cycle at the moment and it really blows. Going through 02 tanks like they are goin out of style and due to some sort of oxygen shortage in this area I was just limited to what I can get refilled so a little added pressure and panic is starting to set in. Sticking with 02, 5hr drinks and Frankincense oil on the roof of my mouth and hopping that this ends soon. On the up side I do not have to sit around dreading any certain moth or time of year when the hits are going to start coming. I have the joy of knowing I am going to get hit in the side of the head with a brick every day!
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Yes I have tried O2 , for a month. result was aborting from KIP10 to KIP4-6 constant shadows. AARRGGH continuously so stopped the O2 and busted with MM. This was two+ years ago at which time I discovered the MM as a preventative/ longer term bust. Haven't tried the O2 since then. .... (..in 2014 my neurologist scripted me Imigran nasal spray as abortive, and verapamil / calcium and beta blockers as preventative, but did not help, on them for more than 12 months with no effect whatsoever) Paracetamol and codeine combo work as abortive, also Imigran nasal spray, but take up to an hour, so a lot of the time I just ride out the storm. Thanks CHF, I have checked the links and info and have recently started D3 with fish oil and ginger as a daily regimen. Also including extra fatty fish and fatty foods and Chinese ginger sweets through the day on top of the vitamins. . Drinking extra ginger tea at night because I fear being woken by a KIP 10 at 2 am Going extra on ginger as understand that it lowers blood pressure. Seems to be helping by extending the time between attacks by up to 30 hours, but have to be super vigilant with the triggers I will start the melatonin soon to include in daily regimen And thanks you for the Benadryl advice. I live on a large property with pets and a dusty shed Some other interesting techniques with the hot water reducing blood pressure so will have to experiment I have been trying to source RC seeds but no joy :/
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Stumped, worn out and looking to hear from other chronic’s
Mastermerls replied to Freud's topic in General Board
Hi Freud I would ask you to try with a radical short nutritional change. Whenever my cycle does not want to end, then I do it. It works within 4 days with me when I'm iron and stick to it. It's very easy to eat there are only a few things during this time. Apples, potatoes, oatmeal, coffee, water. Approx. 1 kg apples a day, from the supermarket without shell! Own anzeits best with shell. 1-3kg Potatoes I cook with shell without salt! Until they are quite through, rather too little. Then I peel it in cold water. 500gr mix at work The oatmeal I eat with a mixture of water and apple porridge and linseed oil. I only drink water without carbon dioxide, and with extremely low calzium salary with 26mg. For values over 100mg developed I strangely strong pain. And the hardest for me. Absolutely no chocolate! coffee without milk! Little sugar! (and no sugar-free things, sweets etc ..) Only these things otherwise nothing 4-5 days! Would be glad if you try it, and tell us .. yes it worked!! If not I would order a pizza home for compensation :-) ps: If it is only possible somehow, forget these drugs for your thought head. I am a damaged by you, Restless Legs.. Greetings and painless hours! -
It seems bizarre that I cannot read any posts on safari, despite flushing DNS, Cache, and History, even switching to 1:1:1 and then a freaking proxy. From there, a Tunnel and proxy. No luck, and while I could resolve the read error, just got internal server errors on the private browsers that everyone knows about. Well, hope they don’t come knocking, I’m freaking using the onion to try. No idea, seems suspect. I’m not IT. My background is HVAC/R primarily AC/R and Controls, and Oil Heat, Hydronic. Mostly light to Mid Commercial/Polyphase systems. My academic is majors in Econ, Finance, and Accounting, whatever is going on seems suspicious and above my pay grade. I just wanted to reach out and say hi, hopefully connect with some of you-you can email me. While controversial to speak freely, I don’t and refuse to follow Woke Culture. I always was and still am a rough boy, over educated and broke (sadly). It seems, and I honestly forgot, taboo in these communities to speak of truth and reality. While I encourage everyone to try, try, try, when you hit the point of no return, it begs the question should I accept, or pursue useless false pretenses? I always tell the new to seek help, but be cautious of the Cleveland Clinic Caliber docs, many are pushers (and you know that). Even despite me vehemently opposing the medical establishment, I am trying to find the money to pay to see Dr. Mickey at the world renowned-if not best-brain clinic, Pitt, UPMC. My Part C won’t cover, and I can drive but without a car it’s a huge expense. My life was hell, but is fundamentally better. Once you partake in radical acceptance, and accept reality, the pain becomes bearable. I hope everyone understands, but for some of us (the ones you try to expurgate) it ain’t sunshine and rainbows. This destroyed me, my life, and I can only dream of having six figures, fast barely street legal factory rice burners, a beautiful wife, and all the luxuries that it affords. I studied the Harvard studies and lived/confirmed that after $80,000 you don’t get much happier, take it higher, about $120,000. Anyway, unlike most, I won’t deny it. I love money, I love six figures in the bank, and a shitload in index funds. Am I wrong, no! This life on the welfare rolls, you can have it. Poverty sucks. Anyway, I won’t get myself in a further hole. Live life, go with what you know, and what works. FYI, I tried to delete my post, and my account-no luck. That seems odd that you can’t. Again, was presenting my side, and was looking to reconnect with the few I did link up with. My iCloud wasn’t a cloud, and I lost all my contacts. Finally, for those that don’t go postal or have psychotic episodes on psychoactive, stay positive. There is considerable promise on the litigious side. In MD, you can have up to an O of grass, you can conduct business in an open drug market (Bmore, PG county), and NMDA and the stuff you guys want (won’t name drop), is already legal in DC. Not injecting politics, but if it’s far left, it’s legal. Olay, I’m out.
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Hey Bejeeber, Got the Bat Signal. Thanks. BP, Grassrootshealth has the home bloodspot test kit for 25(OH)D3 at the following link for $79: https://daction.grassrootshealth.net/product/vitamin-d-home-test-kit/ That said, you still need labs for your serum calcium and PTH. Grassrootshealth doesn't have home test kits for these two analytes. You need all three labs [25(OH)D3, calcium and PTH] now so it's best to see your PCP for them at the soonest. The rationale for these lab tests is simple. If your serum calcium is still within its normal reference range, but not against the upper limit, and your PTH is not at the low limit of its normal reference range, you've room to maneuver with more vitamin D3 loading doses. What's likely happening with the heavy CH hits is you're experiencing an allergic reaction to something in your environment. Pollen, mold spores, dust mite poo, chemical pollutants and some food types are all possible allergens. I drove through Northern CA down to Shasta then East to Reno for the Annual Navy Tailhook Reunion and Conference last weekend. Smoke from the fires was fearsome. When allergic reactions happen, we need significantly larger maintenance doses so it's best to go straight to a loading dose for 3 to 5 days then drop back to a maintenance dose of 50,000 IU every 5 days (Doing the math, that works out to 10,000 IU/day) or reduce the dosing interval to every 4 days, 3 days down to 50,000 IU/day until you get the needed labs if you're still getting hit. There are a few things you can do at this point while waiting for labs of your serum 25(OH)D3, calcium an PTH. 1. A first-generation antihistamine like Benadry (Diphenhydramine HCL) at 25 mg four times a day. (You're already taking Quercetin but you can bump the dose up to a max of 3 grams/day). 2. 500 to 1000 mg/day Turmeric (Curcumin) and 500 to 1000 mg/day Resveratrol have helped some CHers. They're great anti-inflammatory agents. 3. You should have the Nutrasal Micro D3 by now so I would take 0.5 mL (40,000 IU) of it as the maintenance dose per the maintenance schedule above and skip the Bio-Tech D3-50 capsule until you get your lab results in hand. 4. Make sure you're drinking at least 2.5 liters of water a day. Staying hydrated while taking higher doses of vitamin D3 is very important. 5. Finally, there's diet. The Atkins-Ketogenic diet has proven effective in at least two RCTs for migraines. I would start it with a 24 Hour fast drinking only water and taking the protocol supplements. When you've completed the fast, avoid all sugars and fruit juices. Sugar is an inflammatory agent and fruit juices are high in fructose. I would also avoid all wheat products for at least 30 days. That includes grain oils like canola and corn oil. Wheat and grain products also tend to be high in Glyphosate (RoundUp) if they're GMO. Glyphosate is a herbicide. It plays hell on the friendly colonies of bacteria living in your gut called the microbiome. Good fats include organic butter, EVOO, avocado oil and my favorite, extra virgin coconut oil. I would also avoid calcium rich foods like all dairy products. You can eat all the free range organic meats, poultry and eggs you want. A serving or two of wild caught salmon, halibut or Ahi tuna a week is great. You can also eat all the organic Non GMO green and colored veggies you want. Limit fruit to a handful a day of dark berries (blackberries, blueberries, raspberries and dark grapes). I know all this seems like a hassle at this point, but the payoff is worth it. Work with your PCP in a team effort with frequent labs for 25(OH)D3, calcium and PTH so you can keep loading without going bust on serum calcium. The best indication you're getting the maximum benefit from vitamin D3 comes when your PTH reaches the low normal serum concentration and your serum calcium is still within its normal reference range. Take care and please keep us posted. V/R, Batch
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Thank you for the response. I appreciate you taking the time and I will check out the new user link. I have watched some of the videos on here about the use of oxygen and proper masks which led me to purchase the ClusterO2 kit from this site and a regulator that lets me go up to 25 (the one I was given from the Doc has never helped and was exactly what the video said was "nothing"). I did receive what I thought was an auto response about vitamin D3 but I still have read a lot about it in my desperate search and went out and bough the fish oil today. I already have everything else except the Super-K and one other item I cant remember the name of at the moment foliate something or another. I have been taking D3 in pretty high doses but i suppose it wont help if my body is not absorbing it. I did see the mention of Busting boy do i hope that means busting out of this!!! Thank you again!
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Hey DD, AlanK, All, The 80 ng/mL "sweet spot" (target 25(OH)D3 serum concentration) is actually the mean 25(OH)D3 serum concentration reported by 80% of participants in the online survey who experienced a favorable response to this treatment protocol. If you look at the following normal distribution chart of CHer reported lab results for 25(OH)D3 after ≥ 30 days on this treatment protocol below, half of these CHers required a higher 25(OH)D3 serum concentration up to 180 ng/mL to achieve a CH pain free response. What this really means is they needed a larger vitamin D3 loading dose/longer loading schedule and higher vitamin D3 maintenance dose than 10,000 IU/day. I've spent a good deal of time working with the CHers (and their doctors) who didn't respond to this treatment protocol using a 25(OH)D3 serum concentration target of 80 to 100 ng/mL. What they had in common was their serum PTH was still in the mid-Normal range. When they increased their vitamin D3 intake with loading doses between 100,000 IU/day and 150,000 IU/day, their PTH dropped to a low-Normal range and they started responding with a significant reduction in CH frequency or they experienced a CH pain free response. What's also significant is their serum calcium concentration remained within its normal reference range. This vitamin D3 treatment protocol has evolved slightly over its 10 years existence. When we shifted the type of vitamin D3 from the oil-based liquid softgel formulations to the Bio-Tech D3-50 50,000 IU water soluble form of vitamin D3 in mid 2018, we saw an increase in the 30 day significant response rate from 80% to nearly 90% and an increase in the 30 day CH pain free response rate from 54% to 60%. Shifting from the generic vitamin B 50/100 complex to the Methyl Folate + B complex also helped. It's important to note these changes were not made in a vacuum. This is a patient-centered and patient developed treatment protocol so "we" made these changes after observing the increase in efficacy. The "We" is critical here as these changes/improvements could not have been made without input, feedback and active participation by the CHers and their PCP or neurologists following this treatment protocol. Accordingly, in a very real sense, this is Your treatment protocol. It's also important to note that I have also actively participated in these changes to the treatment protocol taking larger vitamin D3 loading doses elevating my serum 25(OH)D3 higher and taken higher vitamin D3 maintenance doses to maintain that higher 25(OH)D3 serum concentration. Over the last four months, several of us have taken a loading dose combination of two (2) Bio-Tech D3-50 capsules and 0.5 mL of the Micro D3 nanoemulsion taken sublingual, for a total daily loading dose of 140,000 IU of vitamin D3. This combination resulted in a rapid and effective elevation of the 25(OH)D3 serum concentration and more importantly, a cessation of CH without going bust on serum calcium or PTH. The following 4-Year chart of my labs for serum 25(OH)D3, calcium and PTH tells the story. My PCP had no problem with my 25(OH)D3 serum concentration at 277 ng/mL as my serum calcium remained within its normal reference range and my PTH serum concentration didn't get too low. He did order a 24 Hr urine collection to make sure I wasn't dumping calcium in urine. Here are the results: Tests: (1) Calcium, 24Hr, Ur w/Creatinine (003324) 28 May, 2021 Calcium, Urine 24hr 146 mg/24 hr 26-354 Calcium/Creat. Ratio 118 mg/g creat. 14-318 Serum 25(OH)D3 at 277 ng/mL (692 nmol/L). No Hypercalcemia and No Hypercalciuria At this point I need to make the following disclaimer. The vitamin D3 treatment protocol discussed above is solely for educational purposes regarding potentially beneficial therapies for Cluster and Migraine Headache. Never disregard professional medical advice because of something you have read on our website and releases. It is not intended to be a substitute for professional medical advice, diagnosis, or treatment in regards to any patient. Treatment for an individual patient should rely on the judgement of your physician or other qualified health provider. Always seek their advice with any questions you may have regarding your health or medical condition. Take care and please keep us posted, V/R, Batch
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I called and asked and seemingly clueless as she said mg/ml but as she prescribes me the vitamin d in medical oil grade D-Cura 25.000ie ampules she won't prescribe me any more until I get it lowered. A huge spanner has been thrown in the works though, I am just home from the hospital where I spent 6 days. I have never had gallbladder problems in my life but it seems it had gone necrotic and had to have it removed in an emergency, I had a huge infection inside so had to stay in hospital. So besides being off the regimen now for 10 days plus (I stopped taking them as I felt ill 4 days before the ER) I now have also learnt that the body without a gallbladder has problems absorbing fat soluble vitamins (D, E, A and K) which presents me with new problems. I could cry... I need to start all over again and wonder what the impact will be on the vitamin intake. I just wish I had a doctor who knew the protocol that could talk me through it and make sure it is going right via blood tests etc. I only got these measurements as I had not been feeling well. Sorry for venting, I have had a rough time lately.
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In the middle of a cluster cycle, going to try the D3 Regimen. Wanting to make sure I have things straight by combining the updates I've read on here from Batch plus the original instructions. Can someone check my homework here? Products: Nutrasal Micro D3 - High Concentrate Vitamin D3 Bio-Tech - D3-50 50,000 IU, 100 Capsules Nature Made Extra-Strength Magnesium 400 mg Kirkland Signature Mature Adult Multi Vitamin Tablets Nature Made Burp-Less Fish Oil 1200 mg One Elevated Methyl Folate+ Life Extension Super K Now Vitamin B-50 Instructions Load (1 week): 0.5cc, Daily Micro D3 Two pills, Daily: Fish Oil Magnesium One Pill, Daily: Bio-Tech D3 Magnesium Kirkland Multi-Vitamin Methyl Folate Super K Vitamin B-50 (for 90 days, then stop) Taper Down (1 week): Two pills, Daily: Fish Oil One Pill, Daily: Bio-Tech D3 Magnesium Kirkland Multi-Vitamin Methyl Folate Super K Vitamin B-50 (for 90 days, then stop) Maintenance: Two pills, Daily: Fish Oil One Pill, Daily: Magnesium Kirkland Multi-Vitamin Methyl Folate Super K Vitamin B-50 (for 90 days, then stop) One Pill, Once a week: Bio-Tech D3 Labs to request: Before starting / 1 month / 3 months / 6 months: Serum 25(OH)D3 Calcium PTH (Parathyroid Hormone) Notes: If any allergic reactions occur, stop taking immediately and consult with doc
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Does anyone get all their vitamins and co-factors in the anti-inflammatory regimen (Batch regimen/Vitamin D protocol) from iHerb ? I have been struggling with this for years, buying locally (in Finland) those that I can find and buying from iHerb the ones hard to find locally (vitamin K2 and such). It's been difficult since our local products are very lightweight for this use. For the first time I am down to 6 different producs (Vitamin D, vitamin K2, magnesium, fish oil, 2 multivitamins) but I think I am still getting way too much things that are not required in the regimen. I have been thinking of buying everything from iHerb (now that finnish customs will tax every shipment anyway) and wanted to ask if you have been able to build the whole regimen easily from products available at iHerb ? Please list the products if you can. This could help others too in different countries since iHerb is shipping all around the world. I think there are other countries where some vitamins and co-factors are hard to find too.
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In a study, eating fatty fish and flaxseed while reducing linoleic acid consumption had a big effect on migraines (40% reduction). ("The major dietary sources of linoleic acid are vegetable oils, nuts, seeds, meats, and eggs. The consumption of linoleic acid in the US diet began to increase around 1969 and paralleled the introduction of soybean oil as the major commercial additive to many processed foods.") There's a suggestion here that eating the fish and flaxseed is better than taking Omega-3 supplements, and a suggestion that the diet affects pain pathways, which is why I thought it might be relevant here. https://www.bmj.com/content/374/bmj.n1448
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Yes true I have not considered for those taking Verapamil that it would be maybe better to check upfront if cold showers could be a contraindication in regards to lowered blood pressure. I am not sure though its actually an issue if you do it slow. Anyways I highly, highly recommend give yourself a week to 10 days to start the cold shower routine combined with the breathing. You basically flood your cells with Oxygen by doing it correct. We humans are masters of adjustment, I think the regular timeframe to adapt to change whatever it is takes roughly 10 days (which fits to the roughly 15 day busting schedule actually). Just do it, you have nothing to lose. Also you do not have to be hardcore and jump right in, you can slowly adjust your body to it. I.e shower regular warm, then gradually decrease to cold and hold. You dont have to go to "full" cold either for the start, just so its not comfortable and hold for like a minute. After some days you will notice that you can drop the temperature even further. Its also not just the cold, the mindset is important as well. Bottom line is that you should enter a sort of meditation like state of mind - its just cold water, you can overcome your urge to leave the shower. The Mantra could be as simple as as "its just cold water - slower spinning molecules then my bodies so this is what creates the sensation" If you are able to pull this through for a couple of days, you will notice something very interesting. The cold water actually starts to feel warm. Sounds silly but it works. Your lymphatic system still gets the benefits from the cold but your mind starts to develop the capability to "switch off". This whole thing isnt just about enduring cold water or kick starting fat burning or what not (thats what most articles who address this technique speak about, fitness / health benefits etc) but for us CHers there is more to gain. Developing resilience. Strengthen and train your mind when you have to endure a bad attack. Just like cold water, a bad attack is also "just" pain. I am sorry I dont want to be offensive I have the same then you and I understand some might be put off by stating its just pain - but ultimately it is just pain. At least as far as we know CH is no degenerative disease, shortening lifespans or what not. The things that come along might affect our life spans, but not the attacks themselves. I might be wrong, maybe an optical nerve actually ripped in someones head but I have not heard about this yet. I think you get my point. This is no snake oil science or else, Wim Hoff did not invent this either. After the death of a family member he slipped into a bad state and was seeking ways out of it and pulled up some more or less forgotten stuff from back in the days. The whole cold water / breathing combination is age old, at least to 1821 where the Priest Sebastian Kneipp first introduced Hydrotherapy. (check wikipedia on Mr. Kneipp)A And no, this sure is no cure or will help everyone which is the usual disclaimer. Its a tool among many which is harmless, has no costs and can done anywhere. all the best to everyone around here
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@Jost you can try taking oil of oregano. It fights both bacterial and viral infections very effectively. Powerful stuff so don't overdo it!
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WTH!! Essential Oils worked?!! (Edit - not really)
FunTimes replied to tmac's topic in General Board
This is interesting. I will put a little piece of paper towel or tissue with Frankincense oil on it and press it to the roof of my mouth for about 3 minutes to help abort an attack. Used like a 5hr energy drink along with the oxygen and it does seem to help me. My wife found out about this on some essential oil website a few years ago. -
Late to the party but figured to response as well in case anyone stumbles upon this post. I looked into wobenzym years ago as well as I knew about its strong anti inflammatory ingredients (had it prescribed because of an inflamed knee, worked wonders) Just to state, this isn't any kind snake oil it's a very well known and reputable brand around here, often prescribed for any kind of joint / limb etc issues by doctors. I don't think it's available in the states for whatever reason (it was not back then, maybe it is now or under another brand name) I didn't try for CH myself as I want to stick to the d3 regimen only if possible but yeah if anyone wants to give it at shot I can confirm the stuff is at least not any hokus pokus when it comes to reducing inflammation but actually worked (for my knee but still)
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Hey Amholla, Good question. For starters, we've found the 12-Day accelerated vitamin D3 loading schedule at 50,000 IU/day for 12 days, a total loading dose of 600,000 IU of vitamin D3, to be effective in elevating serum 25(OH)D3 concentration by 60 ng/mL above the starting/baseline concentration. You're going to need at least another 10 days loading vitamin D3 at 50,000 IU/day to meet the minimum loading schedule. The following chart illustrates the time to respond to this treatment protocol in days from start of regimen with a significant reduction in CH frequency (from a mean of 3 CH/day down to a mean of 3 CH/week). As you can see, the majority of CHers experiencing a favorable response do so within the first two weeks on this treatment protocol. This next chart illustrates the time in days to a complete cessation of CH from start of regimen. This is a subset of the above time to favorable response. There are several factors that influence time to respond. The first is the starting or baseline 25(OH)D3 serum concentration. Seeing your PCP/GP for this lab test before starting this treatment protocol is important. If the starting 25(OH)D3 serum concentration is low, it takes longer to elevate to a therapeutic concentration above the CH threshold. The following normal distribution chart illustrates the results of baseline labs for 25(OH)D3 among 313 CHers experiencing active bouts of CH before starting this treatment protocol. If you didn't obtain this lab test before starting treatment, you're shooting in the dark when it comes to estimating a response time. The odometer and speedometer on your body's dashboard are not working. You don't know how far you've come or how fast you're going towards a favorable or CH pain free response. This next chart illustrates the normal distribution of 25(OH)D3 lab results after ≥ 30 days on this treatment protocol among CHers who experienced a favorable response with a reduction in CH frequency or a complete cessation of CH. If you look at the blue sigmoid S-shaped cumulative probability curve in this chart, you'll see that 25% of CHers on this treatment protocol have responded by the time their 25(OH)D3 serum concentration reached 60 ng/mL. There's another chart CHers taking this treatment protocol should understand. It's the 25(OH)D3 time course response to various doses of vitamin D3. As you can see at a vitamin D3 dose of 10,000 IU/day it can take a month for the 25(OH)D3 response to reach 60 ng/mL. Clearly, waiting 30 days or more to experience the sought after pain free response while following this treatment protocol is too long for CHers. This is why we start it with an accelerated vitamin D3 loading schedule taking 50,000 IU/day of vitamin D3 for a minimum of 12 days as illustrated in the following graphic. The latest revision to this treatment protocol now calls for loading at 50,000 IU/day with the Bio-Tech D3-50 and all the cofactors illustrated in the photo below until there's been a significant reduction in CH frequency or a CH pain free response or 30 days whichever occurs first, then see your PCP/GP for a second set of labs for serum 25(OH)D3, calcium and PTH. We made this switch as the Bio-Tech D3-50 water soluble 50,000 IU vitamin D3 has a higher bioequivalence in elevating serum 25(OH)D3 at the same dose as the oil-based liquid softgel vitamin D3 formulations. We switched to the Methyl Folate + B complex from the vitamin B 50/100 complex for the same reason. If you're CH pain free and your serum calcium is within its normal reference range, you're good to go. Drop the vitamin D3 intake to a maintenance dose of 50,000 IU/week. If you haven't experienced a significant reduction in CH frequency and your serum calcium is within its normal reference range, continue loading for another 15 days then see your PCP/GP for another round of labs for 25(OH)D3, calcium and PTH. We've had a number of CHers continue loading vitamin D3 under a physician's supervision with frequent labs for 25(OH)D3, calcium and PTH, achieve CH pain free responses between 160 ng/mL and 189 ng/mL 25(OH)D3 and still maintain their calcium serum concentration within its normal reference range. The 3-year chart of my labs for 25(OH)D3, calcium and PTH are a good example. The second pacing factor in time to respond is a combination of body mass and body mass index (BMI). An adult male weighing 90 Kg (198 lbs) with a BMI ≥ 30 can easily take twice as long and need twice as much oral vitamin D3 as an adult male weighing 80 Kg (176 lbs) with a BMI of 24 to achieve a favorable CH response to this protocol. The third factor that causes the most problems for CHers starting this treatment protocol is an allergic reaction. Allergens cause the immune system's Mast Cells to release large quantities of histamine. This histamine in turn triggers neurons and glia in our trigeminal ganglia to express Calcitonin Gene-Related Peptide (CGRP). CGRP is one of four neuropeptides responsible for the neurogenic inflammation and pain we know as CH. As long as mast cells are releasing histamine, none of the CH preventatives (including vitamin D3) will be effective. Bottom line, histamine to a CHer is like Kryptonite to Superman - Bad news. If you do suspect an allergic reaction is interfering with vitamin D3 in preventing your CH, you need to treat the allergy with an antihistamine. In 2019 Quercetin became the antihistamine of choice over Benadryl (Diphenhydramine HCL) when CHers suspect or realize they're having an allergic reaction. 1 gram/day Quercetin is a good starting point and you can titrate the dose p to 3 grams/day. 1 to 3 grams/day Resveratrol and 6 to 8 grams/day vitamin C are also part of the intervention for allergic reactions. If there's no joy after a week of the above interventions for an allergic reaction, start taking the Benadryl at 25 mg every four hours throughout the day. If there's still no joy with vitamin D3 preventing your CH, see your PCP/GP for a 5-day burst dose of prednisone at 50 mg/day. Burst doses of prednisone at 50 mg/day for a period this short should not require a taper. If the burst dose of prednisone results in a reduction in CH frequency, see your PCP/GP for a consult with an allergist to find out what is causing the allergic reaction. This latest revision to the posted version of this treatment protocol is still in work. I hope to have it completed and published on vitaminDwiki.com soon. Take care and please keep us posted. V/R, Batch
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Hey Bilal, Good move on switching to the Bio-Tech D3-50. Data for 2019 from the online survey of CHers reporting since 2011, indicated an up-tick in raw efficacy from 82% to 88% of CHers responding with a significant reduction in the frequency of their CH or a complete cessation of CH in the first 30 days after I started suggesting this change due to its higher bioequivalence compared to the oil-based vitamin D3 liquid softgel formulations. There's nothing wrong with zinc glycinate so no need to change. There appears to be a higher bioequivalence in the Methyl Folate + compared to the generic B complex. Regarding safe dosing with vitamin D3. A recent article in the Journal of Steroid Biochemistry and Molecular Biology at the following link, concluded in the results of a seven year study: There were no cases of vitamin D3 induced hypercalcemia a.k.a., vitamin D3 intoxication/toxicity at higher vitamin D3 doses and that long-term supplementation with vitamin D3 in doses ranging from 5,000 to 50,000 IU/day appears to be safe. https://www.sciencedirect.com/science/article/abs/pii/S0960076018306228 The following chart from this study illustrates it takes a long time for a stable dose of 10,000 IU/day vitamin D3 to reach a 25(OH)D3 equilibrium. The takeaway from this graphic points out the need to load vitamin D3 at higher doses (50,000 IU/day to 100,000 IU/day) to reach a therapeutic 25(OH)D3 response for CH in a matter of days where a maintenance dose of 10,000 IU/day can take 10 months. That's clearly too long if the CH beast is jumping ugly and a likely reason too many CHers claim this treatment protocol is ineffective for them. Watching the presentation by Dr. Ryan Cole on vitamin D3 at the following link is a must for everyone. https://www.bitchute.com/video/hfzL5gUeQvxr/ Take care and please keep us posted. V/R, Batch
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Hey Batch, I am still having 1 to 2 hits a day but thankfully they are at night and I'd take night headaches over one during the day while I am at work.... Admittedly I am on what I think is the old D3 regimen that consists of (x2 D3 @10,000 I/U, x1 magnesium citrate @250mg, x1 calcium @600mg and x1 fish oil @1200mg) and unfortunately I haven't had any labs drawn for a while but about 6 months ago I did and they were fine
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Hi all - longtime CH sufferer (11 years), first time posting. My cycles have progressively gotten longer and had more headaches during each cycle over the years. I’m currently 3 months into a cycle and still getting 3-13 headaches per day. Historically, oxygen has worked great and I’ve managed by always keeping oxygen close by wherever I go. Now I have 1-2 headaches per day that oxygen isn’t helping, though luckily sumatriptan injections are still doing the trick. I have never tried MM or the D3 regimen but now seems like a good time to start. Also, I take 75 mg nortriptyline a day and have taken this drug for a few years and seems to be a bit better than verapamil for me The supplement instructions aren’t totally clear to me (I found the wiki but the length of the file and posts since then have me a bit confused) and I was hoping someone could check my understanding below so I am taking each step correctly. 1. Go to a lab and ask them to test serum D3 levels 2. if they are above 45 then no need for the regimen? If they are lower, then start regimen 3. Take bio tech d3-50 every day for 2 weeks. Also during these 2 weeks take 1 mature multi a day, 1000-2400mg fish oil a day, 400-800g magnesium a day, mk-4 vitamin k 1000 a day, mk-7 vitamin k 200 a day, 1 vitamin b 50 a day 4. after 2 weeks do all of the above except bio tech d3-50 is just once a week 5. after 3 months drop the vitamin b 50 does that all sound right? Also, if I can only find some of the above supplements today, should I go ahead and start with some of them or wait until I get all of them? Also, how often do I need lab work done after this? I haven’t taken supplements in the past
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Hey Drewbie, All, The basic regimen posted on vitaminDwiki is still valid for CH and MH. I was in the process of updating it with results from the online survey when the COVID-19 pandemic hit the US in early February. At that point I had two changes to supplements in the posted version. The first is we've found the Bio-Tech D3-50 50,000 IU water soluble form of vitamin D3 to be faster acting with a higher bioequivalence in elevating 25(OH)D3 serum concentrations than the same dose of the oil-based liquid softgel vitamin D3 formulations. I began suggesting this switch in 2019 here on this forum. The same goes for the switch from the vitamin B 50/100 complex to the Methyl Folate + B complex as it also has a higher bioequivalence. I began suggesting this switch from the vitamin B 50/100 complex to Methyl Folate + B Complex in December of 2019. Vitamin C (Ascorbic Acid) and Turmeric (Curcumin) are also covered in the 2017 posted version of this regimen on vitaminDwiki.com. I began posting about Quercetin some time in mid 2019 and if you attended the Clusterbusters Conference in Dallas in 2019, I briefed Quercetin as an addition to the basis regimen. I also posted about Quercetin as a supplement in an immune boosting strategy to help prevent viral infections in early June of 2020. The rational for the switch from Benadryl (Diphenhydramine HCL) to Quercetin was based on the capacity of Quercetin as an antihistamine. As Diphenhydramine is an anticholinergic that easily leads to drowsiness and Quercetin has an excellent safety profile, the switch to Quercetin for CHers suspecting an allergic reaction makes good sense. The emergence of the Wuhan virus and COVID-19 pandemic in early 2020 have posed additional considerations on the update to the posted version of this treatment protocol. For example, I've always known a healthy immune system played an important role in helping to prevent CH and MH. What I didn't fully grasp was the detrimental effects of a dysregulated immune system can be on CH. The results of several studies of COVID-19 and treatments practiced by emergency medicine physicians in the Front Line COVID-19 Critical Care Alliance (FLCCC) focused on a dysregulated immune system as the primary threat to survival from COVID-19. Their treatments include large doses of vitamin D3 (480,000 IU) on admission, Quercetin, zinc as well as IV vitamin C, and Thiamine (vitamin B1). See attached. I'm still working on the updated version of this treatment protocol. That said the updating process is not a simple task. Once I have a clean draft, it will go out to a select group of experts in nutritional science, nutritional medicine and headache specialists for chop and comments. That will take at least a month or longer depending on the comments and suggested changes. Until then, I'll keep you posted. Take care, V/R, Batch FLCCC_Alliance-MATHplus_Protocol_v6-2020-11-12-ENGLISH.pdf
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I'm not sure the percentage. I take 1/2 mL 2x a day. Then I smoke CBD or take another dose if I feel an onset of a cluster. This is the CBD I use. https://cbdamericanshaman.com/water-soluble-full-spectrum-hemp-oil-30ml
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Yes, the Vit D3 did wonder to the cluster headache. Thank you to CHfather for sharing this. In addition to Vit D3, I also find this help, eat watermelons and drink coconut water (from real coconut if possible), eat more nearing and during cluster period. Also go for massage to relax and rest more. To abort the headache, put peppermint oil (from young living) in forehead and behind the ear and if the headache still there, use oxygen (inhale deeply and hold for 1-2 second before exhale)
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Hi Patheticfern, May I ask you what doses you take ? I both a 10 ml bottle a while ago that has 15% CBD oil. The seller told me this is the lightest form of CBD for medical application. Can go up to 30 %. For me to have a little bit of an effect, I need around 20 drops while the guy in the store advised 3 drops per 3 hours... so much it makes me unwell. Maybe I need a higher concentration ? And how do you dose that ? Once a day or several times a day ? I have chronic paroxysmal hemicrania and chronic migraine. For the CPH, I need to take indomethacin to get it under control. Unfortunately, indomethacin makes my migraine attacks worse and resistant against triptans. I am currently experimenting again with topiramate. It has a clear effect on both headaches but I am too sensitive to it and too many side effects. siegfried
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Hey TSmith, Sorry to be so slow in responding. My bird dog must have missed your post or I missed its email alert. My suggestion is to see your doctor for the lab tests of your serum 25(OH)D3, calcium and PTH. If your serum 25(OH)D3 is still over 150 ng/mL and your serum calcium still in the normal range, there's something else going on. Reviewing the bidding. From your earlier post, you indicated you were taking the supplements illustrated in the following photo. 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 Methyl Folate+ is proving to be more effective as well for the same reasons. You're also indicated you're taking the following supplements in the next two photos. If you're taking all of the above, please let me know. There are a few more supplements and an additional lab test that may point us in the right direction to getting you CH pain free. The next supplement to add is N-Acetyl-Cysteine (NAC). It is a precursor to L-Cysteine. This is an amino acid that enables the enzymatic processes that among other things, up-regulates the expression of the vitamin D receptor (VDR) molecule. VDR attach to molecules of the vitamin D3 metabolite, 1,25(OH)2D3 at the cellular/nuclear level and that enables vitamin D3 to attach to a strand of DNA to initiate genetic expression. It's this genetic expression that helps prevent CH. In short, no VDR and there's no genetic expression no matter how high the 25(OH)D3 serum concentration. I order the NOW NAC at the following link. https://www.amazon.com/Now-Supplements-N-Acetyl-Cysteine-1000-Tablets/dp/B00KT3H13C/ref=sr_1_4?dchild=1&keywords=L-Cysteine&qid=1605713283&sr=8-4 Again, it's very important that we see you labs for 25(OH)D3, calcium and PTH. Take care and please keep us posted. V/R, Batch
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Clusters suck and are immutable part of our existence. I fully agree with advice given. There is no way in hell you can ever get anyone to appreciate the pain or come close to understanding unless its a fellow clusterhead. Even then our experience is our own. People think we exaggerate, embellish or plain seek attention. Of course thats not true at all. The bigger issue is anyone who has experienced the pain of childbirth, kidney stones, gout, a broken limb or othe painful event usually only has it once twice or a few times. We get way worse over and over and over. The way I deal is by trying to be my best self and carry on while in cycle as normally as possible. I do my best to not let the beast win. I do tell my staff when I'm in cycle so they understand my asshole self has a reason but I never expect anyone to understand; s\cause they can't. Yo must constantly work to be the best you and avoid self pity at all cost. Ignore the well intended suggestions of the essential oil, ibuprofen, gratuitous "i have that too", Forgive them for theres no way they can do anything but leave you alone
