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  1. Freud, Providing information outreach on RA is a little out of my comfort zone... That said, as it falls in the autoimmune category, RA should respond to vitamin D3 therapy. The only question is how high to take the vitamin D3 dose/25(OH)D response, how much the cofactors need to be increased and any additional conutrients specific to RA that may be needed. The anti-inflammatory regimen is a good place to start, but the target 25(OH)D may be well North of 120 ng/mL, like 180 ng/mL for RA. I say this as I've been there at 188 ng/mL and it depressed my PTH as expected which is good. The only issue is being careful not to depress PTH to zero as we need the parathyroids to continue functioning and not shutdown. The reason for this is simple, we need PTH to maintain calcium homeostasis that maintains serum calcium within its normal reference range. In this case, I pushed my PTH down to 10 pg/mL when the normal reference range is 14 to 64 pg/mL as you'll see in my lab results. This is no different than taking prednisone at too high a dose for too long. The adrenal glands produce the steroids aldosterone and cortisol that are essential for normal healthy physiology. If we take too much prednisone for too long, the adrenals say WTF. Why should I make aldosterone and cortisol when there's so much prednisone floating around... so they shut down. That poses a big problem when you stop taking prednisone and the reason why it is absolutely essential to taper off steroids gradually or only take steroids in short burst doses or week to 10-day tapers. I'm a pragmatist when it comes to preventing CH with vitamin D3 therapy... The expected result of taking the anti-inflammatory regimen is a CH pain free response. Accordingly, I take as much vitamin D3 as needed to stop my CH. This allows me to maintain a very good quality of life, in excellent health, free of terrible CH pain. My lab results for 25(OH)D, calcium and PTH in the following chart are a good example. On the 1st of March, 2018, I increased my vitamin D3 dose to 40,000 IU/day in anticipation of a heavy Alder tree pollen fall in April. On 20 March I had my labs done and my 25(OH)D was 188 ng/mL. As I was CH pain free I dropped the dose to 25,000 IU/day. As you can see, my serum calcium was still within its normal reference range and PTH was low. In early June, I suffered a major insult from mold spores that triggered an onerous allergic reaction (allergic rhinitis) with a flood of histamine. Histamine can make nearly every CH intervention ineffective... so the CH beast jumped ugly. An electrician had ripped out wall board to replace a 50-year-old fuse box in the house in Pelican, AK were we stay while salmon fishing each summer. Unbeknownst to me, there was a half-inch layer of mold in the wall space from years of roof leaks. Within 24 hours of the electrician's work, the stirred up mold spores had the CH beast jumping ugly at night for the first time in many years. Two days of vitamin D3 at 50,000 IU/day and 25 mg of Benadryl (Diphenhydramine HCL) every four hours had no effect. Fortunately, I had welder's oxygen available and I made a couple of my Redneck oxygen reservoir bags out of clean kitchen trash bags, so the CH hits were more of an annoyance that anything else. However, as we were getting up around 04:30 each morning to get an early start fishing, the lack of sleep had me on edge. Rather than trying to sneak up on a therapeutic response taking loading doses of 50,000 IU/day, I took 100,000 IU/day for two days. The night after the second dose of 100,000 IU/day vitamin D3, I slept CH pain free so I dropped the vitamin D3 dose back to 40,000 IU/day for the rest of my two-week stay in Pelican. I estimate my serum 25(OH)D concentration was around 175 ng/mL in June when the CH beast jumped ugly due to the allergic reaction to the mold spores. That should give you an idea how bad an allergic reaction can be to a CHer. On 1 July 2018, I switched to the Bio-Tech D3-50 50,000 IU water soluble (micellized) form of vitamin D3 taking one of the Bio-Tech D3-50 capsules every 5 days (120 hours) for an average daily dose of 10,000 IU/day. When I had my next set of labs on 12 October 2018, I expected my 25(OH)D serum concentration would have dropped from 188 ng/mL to at least 170 ng/mL. When it came back at 181 ng/mL, I was a bit surprised. As I was blissfully CH pain free, I decided it was time for one of by 25(OH)D burn down tests so stopped taking any supplemental vitamin D3, but I continued taking all the cofactors and conutrients. My 25(OH)D serum concentration was 136 ng/mL at my next set of labs on 14 January 2019, 95 days later, for a monthly 25(OH)D burn rate of 14.2 ng/mL.. As I was still CH pain free, I decided to try taking one Bio-Tech D3-50 water soluble capsules a week for an average daily vitamin D3 intake of 7,142 ng/day. At my next set of labs a little over 3 months later on 26 April 2019, the results came back at 152 ng/mL, so it was very clear the Bio-Tech D3-50 was more potent in terms of elevating/maintaining 25(OH)D serum concentration at the same dose as the oil-based liquid softgel vitamin D3 formulations. I'll cover a lot more about this regimen at the Patient Conference in Dallas. Looking forward to seeing all of you there. V/R, Batch
  2. Hey DM, How much vitamin D3 have you been taking as a maintenance dose? As you'll see in the following graphic a 25(OH)D response of 70 to 74.6 ng/mL is within the average response range for a vitamin D3 maintenance dose of 10,000 IU/day. The 25(OH)D response to dose of 10,000 IU/day vitamin D3 is illustrated in the following graphic of 25(OH)D lab results from the online survey of 257 CHers taking this regimen. It's displayed as normal distribution. If you're still getting hit by CH at this dose, follow the treatment protocol as it says to titrate (incrementally increase) the vitamin D3 dose until you reach a CH pain free status. Rationale: 10,000 IU/day vitamin D3 is sufficient for 80% of CHes in preventing their CH. The other 20% need a higher vitamin D3 dose or they've an infection or allergy cooking away. Infections and allergies consume available vitamin D3 rapidly. This could be the culprit keeping this regimen from preventing your CH. As suggested, taking Benadryl (Diphenhydramine), an antihistamine, can help in some cases if an allergy is the problem. Getting back to the need for a higher serum 25(OH)D concentration and titration... The fastest way to titrate the vitamin D3 dose is with two to four days at a loading dose of 50,000 IU/day then fall back to a maintenance dose of 15,000 IU/day. If there's no joy after two to three days at the new maintenance dose, repeat the loading dose for two more days then drop back to a maintenance dose of 20,000 IU/day. Feedback from several CHers who started taking the Bio-Tech D3-50 50,000 IU water soluble (micellized) form of vitamin D3 indicate this form of vitamin D3 is faster acting and more effective in preventing CH than the oil-based liquid softgel vitamin D3 formulations... Bottom line, it may help you arrive at a CH pain free status by switching to the Bio-Tech D3-50. I've been taking it since July of last year at a dose of one (1) Bio-Tech D3-50 capsule a week. This has maintained my 25(OH)D up around 150 ng/mL. The response rate to this regimen reported by CHers taking the online survey during the first 6 months of 2019 has been impressive. 90% of CHers starting this regimen are experiencing a significant reduction in the frequency of their CH in the first 30 days. If this increase in efficacy from 80% to 90% continues, I'm of the opinion it's the Bio-Tech D3-50 that's responsible. Take care and please keep us posted. V/R, Batch
  3. xxx

    Vitamine D3

    Hey Cocobongo, The photos below illustrate the brands and doses of the anti-inflammatory regimen vitamin D3 cofactors I've taken for nearly 8 years. I'm a chronic CHer and this regimen has kept me CH pain free since I started it in October of 2010. I estimate over 2000 CHers are now taking this regimen. I switched from the Calcium - Magnesium formulation to the Costco Kirkand brand Adult 50+ Mature Multi in 2011. This mature multi is important as it contains nearly all the essential vitamin D3 cofactors. It just doesn't have enough magnesium or any vitamin K2 complex. Readers of my web page at the VitaminDWik link http://is.gd/clustervitd have downloaded 26,445 copies of the anti-inflammatory regimen treatment protocol titled CH Preventative Treatment Protocol for Neurologists - Jan 2017.pdf since I put it up online 21 Jan, 2017. In June of 2018, I switched brands and type of vitamin D3 from Nature's Bounty 5,000 IU liquid soft gels to the Bio-Tech D3-50. This is a 50,000 IU water soluble (micellized) form of vitamin D3. I've found it faster acting and more potent at the same dose than the oil-based liquid soft gel formulations. It's also less expensive. Two of the Natures Bounty 5,000 IU liquid soft gels cost 12 cents/day. If you take one of the 22 cent D3-50 capsules every 5 days (120 hours), the average cost per day is a little over 4 cents/day. As this form of vitamin D3 is more potent, most CHers will be able to take one of these 50,000 IU vitamin D3 capsules a week for an average cost a little over 3 cents/day. CHers tend to respond faster to this regimen if they start it with the 12-Day accelerated vitamin D3 loading schedule. As you can see, the 12-Day accelerated vitamin D3 loading schedule elevates serum 25(OH)D up to a therapeutic range of 60 to 100 ng/mL (80 ng/mL is the initial target serum concentration), in roughly 12 days. It can take a month to two months to elevate serum 25(OH)D into the therapeutic range taking 10,000 IU/day vitamin D3. The rationale for the 12-Day accelerated vitamin D3 loading schedule is simple... The faster you elevate your serum 25(OH)D to a therapeutic level, the sooner you'll experience a CH pain free response. It's best to take all the supplements in this regimen with the largest meal of the day. This helps absorption and also helps avoid any GI tract problems. The exception to this rule is while loading vitamin D3 during the 12-Day accelerated vitamin D3 loading schedule where you take one (1) of these 50,000 IU vitamin D3 capsules a day for 12 days then drop back to a maintenance dose of 10,000 IU/day (one capsule every 5 days/120 hours). During the loading schedule, it's best to take 800 mg/day magnesium split 400 mg with breakfast and 400 mg with the largest meal of the day. Splitting the magnesium dose like this helps avoid osmotic diarrhea. Doubling or tripling the Omega-3 fish oil to 2000 to 3000 mg/day while loading is also a good idea. If you haven't responded to the loading dose with a reduction in the frequency of your CH by the end of the first week, starting a week to 10 day course of Benadryl (Diphenhydramine HCL) may help. Take one 25 mg tablet every 4 hours during the day and at bed time. Just be careful and not drive if possible as this much Diphenhydramine will make you drowsy. If you need to drive during the day wait until you're home for the day then take 50 mg as you walk through the door and another 50 mg at bedtime. If you've still not responded by the 12th day of the accelerated vitamin D3 loading schedule, continue taking the 50,000 IU loading dose for another 4 to 6 days then drop back to the initial maintenance dose of 10,000 IU/day vitamin D3. 30 days after start of regimen, see your PCP/GP for lab tests of your serum 25(OH)D, calcium and PTH. As long as you're CH pain free, your serum calcium is within its normal reference range and your PTH is in the lower third of its reference range, your actual 25(OH)D serum concentration doesn't really matter even if its over 100 ng/mL. For reference, over the last three years I've needed to take between 25,000 and 40,000 IU/day vitamin D3 in order to stay CH pain free due to pollen and mold spore counts. This resulted in my serum 25(OH)D ranging between 150 and 188 ng/mL. My PCP has no problem with vitamin D3 doses and serum 25(OH)D this high as long as my serum calcium remains within its normal reference range... and it has. The reason I went into details on cost is simple. CHers are far better off taking this regimen daily year round, even if they're episodic. That means keeping the daily cost to a minimum is important. As shown in the above photos, the cost of this regimen is roughly 43 cents/day or $157/year. That's less than the cost of two subcutaneous injections of Imitrex (Sumatriptan Succinate). The health benefits over and above preventing CH are huge and hard to ignore. Once you've gotten your CH under control with this regimen, you'll want to get the rest of your family taking it or you'll outlive all of them. For reference, the anti-inflammatory regimen is so safe and healthy for us, I've had my close friends and entire family including 8 grand kids taking this regimen since 2012. None of them have CH or MH. The three youngest grand kids were bathed in maternal vitamin D3 at 10,000 IU/day from conception through breastfeeding. These kids have T-Rex immune systems (they don't get sick) with phenomenal physical, neuromotor and cognitive development. They're young Einstein wunderkinds and all three were speaking a second language at age 2. Diet is a very important part of this regimen as certain food types cause inflammation and this can slow or even prevent a favorable response to this regimen. I suggest an Atkins-Ketogenic diet as there are a number of studies indicating this type of diet helps prevent both cluster and migraine headache. Start this diet with at least a 24 to 36 hour fast drinking only water and taking the regimen supplements. Fasting like this burns up blood starch (glycogen) stored in the liver. This will help shift your body over to a fat burning metabolism that results in the formation of ketones, hence the name "ketogenic." For reference, the human brain runs more effectively consuming ketones than glucose. After the fast, it's a very low carbohydrate diet with zero sugars (no fruit juices either) zero wheat products (gluten) and no dairy products. Wheat products include no bread, pasta, cookies, cakes, crackers or pizza. No grain or vegetable oils like Canola or Corn oil. The best and healthiest fats are organic butter, extra virgin olive oil, avocado oil and my favorite, extra virgin coconut oil. You'll need to avoid carbohydrates and dairy products completely for the first 30 days so no high starch food types like potatoes, sweet potatoes, yams or bananas. You can eat all the free range organic meats, poultry and eggs you want. A serving or two of wild caught fish (Ahi Tuna, Coho or Sockeye salmon) a week is great. You can also eat all the organic Non GMO green and colored veggies you want. Limit fruits for the first month to a handful of dark berries a day like blackberries, blueberries or raspberries. Be sure to drink at least 2.5 liters of water a day. I keep a 2.75 liter bottle of water in the frig and refill every evening prior to bed time. Taking a probiotic can also help push you into a CH pain free response. Take the contents of the probiotic as directed on the label until the bottle is empty. The rationale for this is simple... We have friendly colonies of bacteria and biota in our GI tracts call the microbiome. Taking a probiotic will help ensure we have the right mix of friendly bacteria in our GI tracts. As the microbiome represents a major part of our immune system, taking a probiotic makes for a happy gut and a happy gut is a healthy gut. When you've been on this regimen for at least 30 days, see your PCP/GP for lab tests of your serum 25(OH)D, calcium and PTH (parathyroid hormone). Once you have the lab results in hand, please find the time to take the survey of CHers taking this regimen. To start this survey, click on the following link: http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c5ce971022f6 Take care and please keep me posted. I think you'll find this regimen very effective in preventing your CH. If you have any further questions or problems, please let me know. I'm here to help. V/R, Batch
  4. I'm not sure where to begin. The first time I had a CH cycle was about 5 years ago when I was around 17. I am currently 22 years old and just started another cycle. It's been almost a month since my headaches have started. They usually happen every 2-3 days and last for about 2-3 hours. The pain is so bad. I'm not sure what to do because my family thinks they're just migraines, and no one really understands how painful it can be. I was at the point where I just wanted to shoot myself in the head to make the pain go away forever. I had to quit my job because of this condition. I recently read about the vitamin D-3 regimen and I was desperate so I bought the vitamins listed in https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people These were the vitamins I bought: NOW Vitamin A 25,000 IU , NOW Vitamin D-3 5000 IU, KIRKLAND Fish Oil 1000 mg, NOW VITAMIN K-2 100 mcg, KAL Magnesium Glycinate 400 I'm not really sure if that's supposed to be everything but I was so desperate I just bought everything I could find. Does anyone know when I'm supposed to start seeing effects from this regimen? I'm on my third day of drinking these vitamins but I've still been getting my headaches (though they've been less painful). Also can someone tell me an estimate of how much oxygen therapy would cost? Please help me out. Thank you so much for the time
  5. Zookah

    Vitamine D3

    I also cannot thank Batch enough i was contemplating suicide my cycles usually lasted 4-10 months and i was at my wits end. Since starting the regimen ive had about 4 attacks in about a month and a half, instead of once or twice a day, and now almost 2 weeks without an attack! The cofactors he recommends are all very important. I take the d3 10,000 every 6 days. Magnesium 400-800 a day. Advanced K2 once A mature multi to get the Zinc and Boron? And the fish oil omega 3 two times a day Along with a probiotic once a day Never would i have thought that vitamins would be of such help when literally nothing else would. I still get shadows but ill take a shadow anyday compared to an attack daily. Thank you Batch your a life saver!
  6. Thanks Freud. It was reading some of your posts that reminded me that I do not have it as bad as others. I honestly don’t know where I would be with no oxygen right now and at least knowing. I probably will break the cycle sooner or later. Since my last cycle 2.5 years ago , I see some improvements and research finally being done in CH. but even remember reading back then, that shrooms were becoming a go to option for many. I have been on the Vit D. And going to start the K,Magnesium and Fish Oil tomorrow and probably will see a new headache Nero tomorrow, mine seems to have disappeared. ( wasn’t great anyways ). I’ve been reading and will keep reading. I’ll check the link you suggested. I worry a little about the mushrooms due to Job issue. Nothing I’d want to try and explain on a pee test as an EMT in Atlantic City NJ. BUT bonus for unlimited O2 supply ! Wish me a little luck to find a somewhat educated doctor tomorrow. I’ll be in touch. You are a survivor x5 man. Whew
  7. The entire D3 regimen was approved by my oncologist with the exception of any fish oil. I sent screenshots of a vegan supplement for approval.
  8. Amazon had everything needed. I am vegan so therefore am looking for plant or supplement delivery of the needed DHA and EPA.batch did say that the fish oil components can be skipped if necessary
  9. No matter to me if the KETO diet is helpful; I’m a militant vegan (would make an exception for the Omega-3 oil).
  10. When I first started to have CH , I was trying many stupid cures , mostly as abortives and what is weird, some of them worked 1time and one time only. 1.tigerbalm on my forehead and neck, 2. cayman pepper under my tounge 3. icy cold coke This one still works from time to time as abortive 4. aroma therapy --- drops on the neck and forehead- M-grain 100%pure theraputic grade essential oil blend- from amazon ...........I have forgotten about this one. But this was was about 50% successful as abortive. that was before I knew about 02.
  11. Freud My wife was into essential oils and has given my a little frankincense oil on a little piece of tissue about the size of a tab of L. I would keep it on my tongue or under it or just in my mouth any way I could for a few minutes and it did seem to help. I could not set this up in advance to give myself and I could not get the oil on the tissue when I had a cluster but when she was around id did help. I used this before I got my oxygen and early on when I started busting. At this point I dont get the major hits like I did in the past so I have not done it in a long time. I meant to look around my house this weekend for a few triptan shots I had stashed away that I dont use anymore but I got hit a bunch this weekend and a few that lasted an hour each, must be that time of year in our parts.They are expired but should still be fine. I use to use them past the date stamped on them and had no issues. If you break them apart you can get a few out of one shot. I will make it a point to find them and try to get them over to you. I will let you know what I come up with. I may even still have a little Frankincense oil.
  12. Doing a little more looking around on this topic, I see that that boswellia serrata oil is more commonly known as frankincense. There are a few posts here (that you can find using the search bar) about frankincense, mostly kind of favorable. How nice to have such a thoughtful neuro!!
  13. Hey, in some ways I hesitate to post, only because I know what I deal with is candyland to most. Basically it's a 3 week window typically in fall and sometimes an additional 3 weeks I spring. I'll get one headache a day and maybe a couple days with two before going back down to one. These either occur around 7-9 AM or in the evenings. So I guess I'm curious if this is a typical story? The pain is bad and I've been nauseous but never screamed so I'm thinking a moderate severity. For small windows and minimal headache frequencies I'm thinking I don't need the big guns. There are many recommendations out there. Right now I was going to start back on my multivitamin, vitamin d, fish oil and add 10 mg of melatonin. Any advice on prevention/reduction would be a huge help. Jon
  14. xBoss

    CH triggers

    Burning smells (frying, oil cooking off from an oven is huge) chocolate (does happen) cigarette (sometimes) Alcohol (Every time) certain sitting positions on couch (common) falling asleep (nightmare on elm street scenario. Gotta love those 7 cluster nights) Anything with heavy chemical scent (I hate perfume!) Dehydration (I think it's tied in for sure)
  15. Hey Mark, Thank you for your Service and sorry you're having such a rough time. I know what you're going through... A CHer with Migraines makes you a special case. Have the medical types at the VA ordered tests of your serum 25(OH)D, calcium and PTH? If not, you need to ask for these lab tests. What we've found over the last 8 years of CHers and migraineurs taking this regimen to prevent their headaches, is most chronic CHers and migraineurs need a higher vitamin D3 dose and higher resulting 25(OH)D response between 100 ng/mL and 150 ng/mL in order to bring their headaches under control. 25(OH)D concentrations this high cause most PCP/GP and neurologists to freak out saying you're pushing yourself into vitamin D3 toxicity. That's a scare tactic... I'm a chronic CHer and have maintained my serum 25(OH)D concentration between 120 ng/mL and 180 ng/mL over the last three years in order to remain CH pain free. This has required average vitamin D3 maintenance doses between 20,000 IU/day and 40,000 IU/day. My PCP has been OK with my 25(OH)D this high during my annual physicals as long as my serum calcium and PTH remain within their respective normal reference ranges... and they have. We've also found that the Bio-Tech D3-50 water soluble 50,000 IU form of vitamin D3 is faster acting and more potent in terms of elevating serum 25(OH)D than the same dose of the oil based liquid softgel vitamin D3 formulations. I doubt the VA has this brand and strength of vitamin D3 in their formulary so you'll need to order it from amazon.com or iherb.com. If you haven't already done so, restart the Vitamin B 100 Complex. Doing this has helped a number of CHers and Migraineurs. A number of CHers and migraineurs with problems like yours have found taking a first-generation anti-histamine like Benadryl (Diphenhydramine HCL) for a week to 10 days at 25 mg every 4 hours and at bed time helped them kick start the vitamin D3 regimen. What other Rx pharmaceuticals have doctors at the VA prescribed for you besides the CH/MH prophylactics? Most migraineurs find they need a few other supplements in addition to the anti-inflammatory regimen at higher vitamin D3 doses to control their migraine headache (MH). These additional supplements include: 300 to 900 mg/day CoQ10 1000 to 2000 mg/day Turmeric (Curcumin) 4000 mg/day Liposomal Vitamin C Probiotic with a high colony forming count containing a variety of Lactobacillus acidophilus, Lactobacillus plantarum, Bifidobacterium bifidum, and Streptococcus thermophilus. Take as directed on the back label until the bottle is empty. 300 to 600 mg/day Alpha-Lipoic Acid (ALA) 500 mg/day Resveritrol 500 mg/day Quercetin 3 to 6 grams/day L-Lysine with the liposomal vitamin C I know this sounds like a lot of supplements to take on top of the anti-inflammatory regimen, but they don't all need to be taken at the same time. For example, a 20 to 30 day course of probiotic is only needed to start this regimen and following any prescribed course of antibiotic. This helps colonize or re-colonize the friendly bacteria in the GI tract called the microbiome. A number of studies have found the microbiome plays an important role in a healthy immune system. Efficacy data indicate it's best to start this regimen with CoQ10, liposomal vitamin D3 and turmeric (curcumin) and to continue taking them daily. The ALA, Resveritrol, Quercetin and L-Lysine need only be added if there's still no favorable change in migraine frequency. The Atkins or ketogentic diets are also proving to be very helpful in controlling both CH and MH. You start these diets with a 24 hour fast drinking only water (and taking the anti-inflammatory regimen). This fast burns off the blood starch (Glycogen) stored in the liver. When done with the fast, it's zero sugars and that includes commercial fruit juices and soda pop. Zero wheat products including bread, pasta, cereal, cookies, crackers and pizza... Limit foods high in starchy carbohydrates like potatoes and bananas to a small handful a day. Stay away from grain oils like Canola and Mazola/corn oil... They're usually made with genetically modified grains high in Glyphosate, the herbicide in Roundup. Good oils include organic butter, olive oil, avocado oil and my favorite, extra virgin coconut oil. You can eat all the free range organic meats, poultry and eggs you want. A serving or two a week of wild caught fish is great. You can also eat all the organic NON GMO green and colored veggies you want. Limit fresh fruits to a handful a day of dark berries like blackberries, blueberries, raspberries and dark grapes. Organic almonds make a great between meals snack. Be sure to drink at least 2.5 liters of water a day. Having your wife join you on this diet makes it a lot easier... Getting back to lab tests for 25(OH)D, calcium and PTH at the VA... If you tell them you're taking 50,000 IU/day vitamin D3 to control your CH and MH and that you want to ensure you've not pushed yourself into hypervitaminosis-D, they're required to order the 25(OH)D and calcium lab tests. Take care and please keep us posted. V/R, Batch
  16. Hey hugeser, hey Siegfried, same problem here. I am suffering from CH and I would say that working in front of the screen during the whole day is one of my biggest triggers. I am using Ubuntu which provides the blue filter as an internal option (I guess this is also applicable in the windows settings). Optionally, I recommend the free software "redshift". If you often have dry eyes, you could try to supplement omega-3. I am taking one capsule every morning and evening (total amount 400 mg EPA, 300 mg DHA) which also helps me a lot with the CH!! The vegan algae oil works best for me!! I also recommend you to do a small break every 30 - 45 minutes. If it is possible, let your eyes wander over green landscapes for 3-5 minutes. If your eyes are quite red, you also can use eyebright extract for 2 weeks. This will get rid of the inflammation. Cheers, Milelli
  17. Hey Stephan, That's a very healthy list of natural nutrients... Add 10,000 IU/day vitamin D3, 400 mg/day magnesium (chloride or glycinate), a mature multi with zinc and boron, 1000 to 2000 mg/day Omega-3 fish oil and a good vitamin B complex and you'll have a fantastic natural CH preventative regimen that will let you drink beer, wine and other spirits without a hit. A change in diet to a ketogenic or Atkins diet with zero sugars, zero wheat products and only limited amounts of carbohydrates plus 2.5 liters of water a day will also be a big help. You can eat all the free range organic meats, poultry and eggs you want. A serving or two of wild caught fish is also great. You can also eat all the organic NON GMO green and colored veggies you want. Limit fruits to dark berries like blueberries and blackberries. Natto is a rich source vitamin K2... the menaquinones (MK4 and MK7). It acts like a catalyst to improve bone mineral density, where vitamin K1 is the clotting vitamin. See the following link for the anti-inflammatory regimen CH preventative treatment protocol. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Readers of my web page at VitaminDWiki at the following link http://is.gd/clustervitd have downloaded over 15,000 copies of this CH preventative treatment protocol in the last two years. Take care and please keep us posted, V/R, Batch
  18. Cluster headaches my natural remedies: lachnanthes tinctoria D6 3x5 Calcium phosphororicum D12 MSM 2x /Day minimum (in phase up to 20 spoons or capsules) Black cumin oil (takes out the inflammation) Carnosin (2-4) Nato (Makes blood thinner) Cortison homeopatic (worth a try) Q10 Wobenzym (German name of it) Psilocybin - Magic mushrooms) 1.5 - 3.5 and 4 Grams. Note: Not legal, but who the Fxxk cares. Oxygen 15L/Min - Helps short time for me Water fasting - I haven't tried but will My Triggers: Glycerin Cigarettes Beer Whine Others I am not aware of yet Cycles start with late winter, early spring mostly: January - 10 February Antihistamines and nicotine do not trigger my clusters. My allergies start around April - May usually. This year in March, due to warm weather. First time I took antihistamines during a cycle but not before the clusters. So for me it's not a trigger. Important Note: Glycerine (heart patients and electric cigarette smokers etc..) This will 100% trigger the clusters cycle. In fact, it's a way doctors in neurology diagnose cluster headaches. For eSmokers... There is liquid without glycerine. Now the pharma medicine list I have used and partially use today, when all else fails. 1. Sumatriptan-Hormosan Inject 6mg/0,5 ml This one way single shots take the pain away for me. However, they completely take me out as well. All I can do is sleep and after that illl benumb, dull, drowsy and not able to focus on anything. Heart issue patients be careful as the side effects can influence, effect and cause severe heart problems. 2. Zomig nasal spray 5mg Helps me for a short while only but it can bring relief. 3. Prednison 20mg(cortisone) - first 10 days 120mg a day - 8 days to 80mg a day - 4 days 40-50mg a day - 2 days 20mg a day Seriously, as much as I hate taking this crap cortisone, it almost instantly after starting with it, ended my cycle. So from all the chemical pharma this is my number one if all homeopathic options fail to keep it at bay. The long term side effects of are numerous and nasty and I simply dispise using it. 4. Verapamil (Betablocker) I will list it here, but have nothing to say about it, accept that it is used as part of the cycle cure listed above under the pharma meds. This crap has an effect on libido, the heart, and all kinds of other things in the body. I never used it. However, I would, if all else failed.
  19. Similar pattern for me. I have classic episodic clusters for 3 decades. Things start to cycle and you try everything at once to see what sticks. Then of course once you think you have a strategy the usual go to's do not seem effective. This last frustrating cycle found me using a bit more imitrex than I wanted. There are lots of individual reports of rebound, bad side effects and overuse headaches but statistically adverse effects are seen in the minority of individuals. I use Imitex 2mg sg (I get vials) when O2 fails after 20-30 minutes. I have found that taking oral imitrex 50 mg before bed does get me a nights sleep even though its not meant to be a preventative. It does seem to push some of the attacks to waking hours. The anxiety, particularly fear of sleep, is normal. Nothing wrong with the judiciously used anxietylytic. Some use CBD oil or THC or Skullcap but that does not seem to help everyone. Once I got some distance from Imitrex a few nighttime MM caps (low dose) seemed to slay the beast for now. Then again the cycle may have run its course. I am pretty sure the psilocybin did its job but there is no way to know. I've done D3 a long time and remain plus minus on it, recently stopped all together to see if I could detect a change. Have been through high dose steroids, antihistamines, and all the conventional meds. GammaCore was useless for aborting and prevention. Get your mycology effort rolling and stay ahead. If it works for you don't run out.
  20. Income for a congressman is 175k to 225k for the speaker. They are all multi millionaires, you can go online and see how much money big pharma, oil and gass, doctors groups and hospitals give them to stay uninvolved. It is a shame.
  21. Hi all. I stumbled here searching for Depression + psychedelics. But was very intrigued as I have had episodic cluster headaches for 30+ years. Thought I’d tell my story in case it helps and then throw out my questions for any who want to chime in with ideas. The clusters first started in college and weren’t formally diagnosed and effectively treated until I was in grad school at UPenn half a dozen years later. I saw the doctor who ran the headache center there (after the generalist I student health prescribed something that made them worse, sent me for a CT scan, and then said there was a headache center at the University Hospital, but I’d have to pay a $20 co-pay...) and before I could get a word out of my mouth, he took one look at me and said “You have cluster headaches.” Described my symptoms better than I could have, guessed the onset of the cluster within 2 days, and then berated the doctors in “stupid health” for the next 10 minutes. Sansert worked for me. But then after leaving Philly finding a neurologist who would prescribe it was nearly impossible. Tried Verapamil + Prednisone - made them worse, as did other “treatments”. High flow Oxygen worked sometimes as an abortive therapy. Luckily mine were Episodic as I got into my mid-30’s clusters became less frequent. In my early 40’s I was diagnosed with hypogonadism (aka: very low testosterone). Physician at that time prescribed Testosterone, high dose vitamin D, fish oil, and some other supplements. It didn’t register until that physician passed away and I was w/o a T prescription for a while that the T supplementation had seemingly ameliorated the CH’s. Cannot say it was the D, b/c I was still taking that and the clusters came back without the T supplementation. Clusters seem to be in check now that back on T and the supplements. However, in the past few years I have struggled with increasingly frequent and severe bouts of depression and sleep issues and recently significantly elevated Blood Pressure and Cholesterol. And cardiac calcium test indicated that at 51 I have the coronary calcium levels corresponding to the median for a 70-75 year old male. Wish someone had thought to suggest vitamin K2 when they put me on mega D3. Frustration I have is that specialists want to focus on their specialty and treat with drugs that deal with the specific symptoms. Psychiatrist wants to feed me Anti-depressants and sleep aids. Cardiologist prescribes calcium channel blockers, and angiotensin receptor blockers. Endocrinologist happy to prescribe T (so long as cardiologist OK with it) and a slew of supplements. At the same time, blood glucose indicates I’m pre-diabetic. Have followed a keto protocol for the past 2 months and have lost 20 pounds which probably helps all around, but still feel like crap and no lasting relief for the depression despite the meds, CBT, etc. Pretty obvious (to me at least) that these are all interconnected. The brain and body are SYSTEMS. Appreciate any thoughts/suggestions/reference sources that address these SYSTEMICALLY and possibly a good functional medicine MD that isn’t full up on patients, preferably in SoCal. Looking for what can reverse the downward spiral and create a virtuous circle. No magic bullets but pieces of the puzzle that link together to help. It may be a red herring, but given that Sansert worked for my clusters, intuition is that psychedelics might help with the depression. Make sense? Thanks, J
  22. I've had a welder's M-size O2 cylinder in my garage since June of 2010... That was before I developed and started taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 plus Omega-3 fish oil and the rest of the co-nutrients 10 October 2010. I burned through the first and second M-size cylinders through September of 2010. I picked up the 3rd refill in early October 2010. It still has 1200 psi... and I actually do a little brazing (welding) and cutting at times... An oxygen concentrator will work just fine if you use it fill a Redneck Oxygen Reservoir bag ahead of time... i.e., between hits... Use the search tool at the top of the page and key in "Redneck" You'll find the "How To" DIY and breathing procedures. Save the canula and oxygen tubing as you'll need the tubing to fill the Redneck Reservoir bag from the concentrator. Take care, V/R, Batch
  23. My daughter has been using 5-Hour Energies with good success for aborting (along with O2) for many years. Sometimes her attacks break through and last a long time (couple of hours), and she often uses more than one 5-Hour Energy. That many 5-Hour Energies, as many as four or five a day some days, makes her feel pretty crappy. About a week ago she just couldn't take another 5-Hour, so she went with some coffee she had sitting around. Got a very fast abort with it and O2. Since then, she's been using coffee and consistently aborting pretty quickly (~10 minutes), and her gut feels 100% better. I suppose it's possible that like other meds, too much of whatever's in energy shots might turn out to be counterproductive. (Or, as you all know, it could be any number of other things. For example, she was taking hemp oil for the CBD right about until the time she switched to coffee; so maybe the oil/CBD was making things worse instead of better.) She doesn't use triptans or any preventive except D3. She's also been drinking ginger tea every day for about a week. Maybe that has something to do with it.
  24. Hey Katrina, Welcome aboard. I suspect you are vitamin D3 and magnesium deficient. These deficiencies can easily contribute to SUNCT/SUNA and the rest of the TACs. The Standards of Care recommended treatments for SUNCT are frequently Antiepileptic medications which are useless as you already know and do more harm with adverse side effects that any good in preventing these headaches... I usually suggest headache sufferers see their PCP/GP for a lab test of their 25(OH)D serum concentration. However, there in the UK, your NHS guidelines usually prohibit this lab test unless there's suspected hypervitaminosis D. Accordingly, if you run into this problem, telling your PCP/GP a little white lie that you're taking 50,000 IU/day vitamin D3 should do the trick. On the other hand, data from several sources including the online survey of 257 CHers taking the anti-inflammatory regimen have found most are vitamin D3 insufficient/deficient as illustrated in the normal distribution chart of 25(OH)D lab test results taken prior to starting the anti-inflammatory regimen. As you can see, the majority of the 257 CHers taking this lab test prior to starting the anti-inflammatory regimen had 25(OH)D serum concentration below 30 ng/mL or 75 nmol/L as its measured there in the UK. The optimum range for 25(OH)D that results in a decrease or cessation of CH is 80 to 100 ng/mL (200 to 250 nmol/L). Accordingly, obtaining this lab test now is not as important as having it done 30 days after starting the anti-inflammatory regimen. As most CHers have found taking a vitamin D3 loading dose of 50,000 IU/day for 12 days elevates their serum 25(OH)D into the therapeutic range rapidly and usually with favorable results, then dropping back to a maintenance dose of 10,000 IU/day, it wouldn't be a lie if you told your PCP/GP you've been taking 50,000 IU/day vitamin D3. Your best course of action is to do what many cluster headache sufferers (CHers) there in the UK do, and that's to order some 5000 IU vitamin D3 soft gels. I work with hundreds of new CHers a year and have recently found that Bio-Tech D3-50, a 50,000 IU water soluble form of vitamin D3 from Bio-Tech Pharmacal is faster acting and more effective at the same dose as the liquid soft gel vitamin D3 formulations. I've been providing information outreach to nearly 2000 CHers over the last eight years on the benefits of taking what I call the anti-inflammatory regimen. It consists of 10,000 IU/day vitamin D3, 400 mg/day of magnesium, 25 mg/day zinc, 3 mg/day boron, 1000 mg/day Omega-3 fish oil and vitamin A at RDA. The results have been amazing with 80% of CHers reporting a significant reduction in the frequency of their CH from an average of 3 CH/day down to 3 to 4 CH/week in the first 30 days. Moreover, 50% of CHers who start this regimen experience a complete cessation of their CH in the first 30 days. As SUNCT/SUNA are the evil cousins of cluster headache with similar pathogenesis, they should respond to this regimen as well. While you're waiting for the vitamin D3 there are several things you can do now to help reduce the frequency and severity of your headaches. These include hydration, drinking at least 2.5 liters of water a day. It sounds too simple, but it works. You shouldn't have any problems picking up magnesium, zinc, boron and vitamin A supplements. To this many CHers and migraineurs have added 300 to 900 mg/day CoQ10 (very important if you're taking statins), 1000 to 2000 mg/day Turmeric (Curcumin), liposomal vitamin C at 4 to 6 grams/day, Quercetin and Resveratrol at 500 mg/day. We've also found diet can play a key role in successful headache preventative treatments. The Atkins Diet or Ketogenic DIte are both very effective. They call for a complete abstinence of all sugars, wheat products and a very limited intake of carbohydrates or high starch food types. You can eat all the free range organic meats, poultry, eggs and wild caught fish you want. NON GMO organic green and colored veggies are also on the list of good things to eat. Restrict fruits to dark berries and grapes. A good anti-inflammatory diet should also include garlic, ginger, lemon, and apple cider vinegar. You can combine fresh ginger, garlic, lemon juice and apple cider vinegar with some extra virgin olive oil and blend as an emulsion salad dressing over fresh spinach, sweet onions, portabella mushrooms, boiled eggs and some smoked or kippered salmon. That's a great meal all in one... Take care and please keep us posted. V/R, Batch
  25. Hey Plhbn, Welcome to Clusterbusters... Sorry about the return of your CH... If there's anything predictable about this disorder is it's unpredictable... Accordingly, crap happens... The best form of vitamin D3 suggested today is Bio-Tech D3-50. I buy it from amazon at the following link. https://www.amazon.com/Bio-Tech-D3-50-000-100-caps/dp/B00CFBAFIY/ref=sr_1_5_a_it?ie=UTF8&qid=1548523894&sr=8-5&keywords=Bio-Tech+D3-50 This is a water soluble 50,000 IU capsule that makes it far more bio-available than the oil-based liquid soft gel formulations. Be sure to pick up some 400 mg magnesium capsules. The process of hydroxylating (metabolizing) vitamin D3 consumes magnesium rapidly as it is need during the enzymatic process. Without magnesium supplements, vitamin D3 will deplete available magnesium rapidly leading to muscle cramps... I also suggest taking the rest of the vitamin D3 co-nutrients. You can find them at the following link: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Regarding Cacitriol. It is not recommended for cluster headache. The rationale is simple once you understand the molecular biology involved. Vitamin D3 and its first metabolite 25(OH)D3 pass through the blood brain barrier (BBB) and into neurons throughout the brain and in particular, neurons within the trigeminal ganglia. Once there, enzymes hydroxylate the parent vitamin D3 molecule and the 25(OH)D molecule to the genetically active metabolite 1,25(OH)2D3, calcitriol. It is this metabolite that initiates the genetic expression that helps prevent CH. It turns out the BBB has windows of maximum size of 400 Daltons (Da). That means any molecule with a molecular mass greater than 400 Da will not be able to pass through the BBB. The parent vitamin D3 molecule has a molecular mass of 385 Da and 25(OH)D has a molecular mass of 400 Da. That means both can pass through the BBB although being smaller by one hydroxyl group, vitamin D3 passes through the BBB faster than 25(OH)D. Calcitriol, 1,25(OH)2D3 has a molecular mass of 415 Da so is too large to pass through the BBB. If too much calcitriol is taken, it can pull too much calcium from the gut causing hypercalcemia, a.k.a., vitamin D3 intoxication/toxicity. Hope this helps. Take care and please keep us posted. V/R, Batch
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