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  1. I just passed through my third cluster without a headache by going on a low histamine diet during my regular cycle! Absolutely amazing. I’ve had regular spring/fall clusters for the past 14 years (with occasional smaller clusters in between). About 1 ½ years ago a naturopath suggested that I try a low histamine diet. I went on it about a month before I usually enter my spring cluster and stayed on it for the duration. Not one headache. I could definitely sense that things were going on and I had a few shadows but it never tipped over the edge. After that I went back to a normal diet until my normal fall cluster. Then I did the same thing with the same results. This spring I didn’t start the diet until I felt that I was about to enter a cluster and that worked OK. I was a little less strict this spring and did have to bust out the O2 once but I probably would have been OK without it. My level of understanding of the physiology of it isn’t that great but this is how I think about it. Our body makes histamines in response to allergens (and for other reasons). Foods contain them as well. If we avoid foods that contain lots of it we can lower our overall histamine levels. Then, when we’re in a cluster and our hypothalamus misfires and causes histamines to kick out and dilate our blood vessels and cause us horrendous pain, there’s simply not enough histamines to do the normal damage. I’m sure those of you more knowledgeable will tear that up. The overall histamine level is also why the traditional food-journal never helped me. There’s not one trigger. The orange you ate before you got a headache wasn’t necessarily the cause. The ham and Swiss you ate earlier was just as guilty. The food list is pretty long, and there are lots of variations of it out there. It’s a really annoying diet but totally worth it. Interestingly, I went to see the naturopath only after I had inadvertently put myself on a high-histamine diet. Typically my spring/fall clusters last 1-2 months but I was in one that had been going on for 4+ months and was worse than any I’d ever had. With my tools (O2, verapamil and imitrex) no longer being enough and me having a hard time getting an appointment with my neurologist I went to see a naturopath who I knew (who wasn’t familiar with cluster headaches but did some research and came up with an amazing shot in the dark). My inadvertent high-histamine diet was an anti-inflamatory, low-pH diet that I was trying. It turns out that my daily apple-cider vinegar tonics and pineapple/spinach smoothies were just about the worst things I could have done.
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  2. JohnCluster, I don't mean to be a downer, but it sounds like your cycle just came back, regardless of diet. I can say diet can make a positive impact to reducing the severity and frequency of attacks. (Staying away from any foods with tyramine in them). If you look at any common trigger list, you'll see the worst triggers are always the highest in tyramine. Tyramine being a trigger for individual attacks, but not a trigger for the core cause of our condition. It's good you had such a long time pain free. Diet can definitely make a positive difference. Our cycles change over time. I've gone 2 years without a single attack, then out of the blue I had 2 cycles in one year. It constantly changes. (as does our brain chemistry). PFW, J
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  3. Hmmm... Lots of good questions so I'll start with the vitamin D3 cofactors... In simple terms, more CHers respond to this regimen if they take all the cofactors than CHers who take only vitamin D3. That some CHers experience a cessation of CH symptoms taking only vitamin D3 likely indicates they're likely eating a diet very rich in the needed vitamin D3 cofactors. To give you an idea of how much dietary sources of magnesium you would need to eat a day in order to satisfy the 400 mg/day requirement for magnesium, you would need to eat: 3/4 pound of dark chocolate or 13 ears of corn or 4 cups of broccoli or 8 cups of peas or 5 cups of Tofu or a cup and a half of Cashews or 13 bananas or 3 cups of black beans... (that could be dangerous) and the list goes on... My SWAG (Sophisticated Wild-Ass Guess) is it will be a lot easier and cheaper to take a 400 mg capsule of magnesium for 11 cents a day than go through the gastrointestinal stress... and expense of eating enough dietary sources of magnesium each day... What we've learned over the last 7 years about this regimen is Magnesium is a must as it is consumed rapidly in the enzymatic process that hydroxylates vitamin D3 to 35(OH)D and on to 1,25(OH)2D3 the genetically active metabolite. Without magnesium supplements, taking 10,000 IU/day or more vitamin D3 will deplete the body's magnesium reserves rapidly (a couple days) and this results in a magnesium - calcium imbalance. As muscle contraction requires calcium and muscle relaxation requires magnesium, a magnesium deficiency will result in muscle cramps. Finger and leg cramps are annoying at best... however when cardiac muscle starts cramping or not relaxing properly, THAT will get your attention with a fluttering feeling in your chest. Solution... take at least 400 mg/day magnesium. The other indication of insufficient magnesium is when CHers take only vitamin D3 they tend to have a favorable response or a pain free response within the first week... They enjoy 2 to 3 days of CH pain free bliss then the CH beast starts jumping ugly again... Why? Vitamin D3 has consumed available magnesium leaving none to support further vitamin D3 hydroxylation. Regarding the rest of the vitamin D3 cofactors... My research and that of experts in vitamin D3 therapy indicate each of the remaining cofactors plays a role in both the D3 pharmacokinetics (What the body does to vitamin D3) and vitamin D3 pharmacodynamics (What vitamin D3 does to the body). As CHers, we need to take this regimen daily as a way of life. Accordingly, I've tried to select the supplements with the best bang for the buck. 10,000 IU/day Vitamin D3 (Nature's Bounty) - 12 cents 400 mg/day magnesium (Nature Made) - 11 cents Kirkland 50+ Mature Multi - 4 cents (The Mature Multi contains nearly all the essential vitamin D3 cofactors. It doesn't have enough magnesium and it doesn't have any vitamin K2), Omega-3 Fish Oil (Nature Made) - 8 cents (The Omega-3 fatty acids act as a potent anti-inflammatory and also help in the absorption of vitamin D3). This brings the total cost per day for the anti-inflammatory regimen essential supplements to 36 cents. Adding the LEF Super K with advanced K2 complex (MK4 % MK7) - 20 cents This brings the total cost of basic anti-inflammatory regimen to 55 cents/day. When to take the anti-inflammatory regimen... For starters, its best to take this regimen with the largest meal of the day. There are two good reasons for doing this. 1. Absorption is highest when these supplements are taken with food high in fats. 2. Taking this regimen with food helps avoid GI tract distress. As an example, taking magnesium on an empty stomach increases the odds of osmotic diarrhea. It's also best to take all of these supplements at the same time each day. Rational... Vitamin D3 absorption starts when it reaches the small intestine and continues as it travels roughly 12 feet until it reaches the large bowel... roughly 12 hours after oral dose where it reaches maximum serum concentration (Cmax). Vitamin D3 (not 25(OH)D3) has a half-life of roughly 18 hours as a fraction of vitamin D3 it is hydroxylated to 25(OH) vitamin D3 each time serum vitamin D3 passes through the liver. What really counts for us as CHers is the hydroxylation of vitamin D3 at the cellular level in neurons and astrocytes within the trigeminal ganglia. Here it's likely hydroxylated at the same rate... and possibly much faster. As this is the site of the genetic expression that down-regulates the expression of CGRP that helps prevent our CH, and the reduction in CH frequency can be as short as 12 hours... hydroxylation to 1,25(OH)2D3 may be even shorter than 12 hours. Getting back to vitamin D3 pharmacokinetics... 10,000 IU of vitamin D3 = 250 mcg = 0.25 mg... That's not much when you consider nearly every cell in the body needs vitamin D3 and we're trying to get as much as possible into neurons and astrocytes within trigeminal ganglia where it's hydroxylated to 1,25(OH)2D3 to support the genetic expression of peptides that down-regulate the expression of CGRP and in doing so, helps prevent our CH... Hope this helps... Take care, V/R, Batch
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  4. 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
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  5. I don't know if this shines a light on anything, and I don't think they've done more research on it, as, it probably wasn't that interesting to them... But Mast Cells play a large part in allergic reactions. (And in life itself...) They release histamine and, oh, about 500 other hormones. And they've found them all up in our faces in the areas we have Cluster Headaches. https://www.ncbi.nlm.nih.gov/pubmed/6733778 And https://www.ncbi.nlm.nih.gov/pubmed/2272091 Benadryl prevents mast cells from releasing histamine. Which is believed to also stop mast cell activation. The problem is, with mast cell disorders at least, generally if you take the same thing over and over again, you become immune.... Mast cells are jerks. I think I tried the low histamine diet for the mast cell problems before we knew it was mast cell disorder and therefore did me no good. (Because I react to what my body has ID'd as the enemy.) But not for CH. I'm guessing it's not my problem as I'm on a shit ton of antihistamines still (No Benadryl, allergic to that) and Anti-IGE therapy with Xolair and no joy.. But maybe once we calm enough mast cells down it'll get better.
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  6. I've been following this concept for a while. My personal opinion, for what it is worth, Is that there is merit. I have had personal positive results. Now cetainly my positive observation are clouded by many confounding factors. I currently use DALT every 5-7 days, toss in some low dose mm sporadically when I have 6 hours to spare, D3, verapamil and a beta blocker. The verapamil and beta blocker are ostensibly for hypertension but I chose them for my blood pressure hoping they would do double duty. At night I take 75-100 mg of benadryl which is a relatively new add. To my delight it seems to knock out any lingering shadows and I sleep better. Never was a dreamer but I've been having vivid dreams. This I attribute to the DALT but its only a guess. Following a diet would be a better physiologic test but my lifestyle and variable schedule would make this darn near impossible. To be a bit analytic about this I should start withdrawing some treatments but I am so happy to have relative control of the beast its not worth it. Same philosophy that makes all studies hard. Bottom line it is great folks are trying this and continue to report on their experience. Information is power and helps fill in the blanks while helping others. This forum is such a great place!
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  7. Histamine Restricted Diet "the list" Allowed/Restricted Foods This diet excludes all: foods with naturally high levels of histamine fermented food artificial food coloring, especially tartrazine Benzoates including food sources of benzoates, benzoic acid and sodium benzoate Butylated hydroxyanisole (BHA) and butylated hydoxytoluene (BHT) Milk and Dairy Foods Allowed Plain milk Ricotta cheese Foods Restricted All prepared dairy products made with restricted ingredients All cheese All yogurt Buttermilk Breads and Cereals Foods Allowed All plain grains Plain oats and oatmeal Plain cream of wheat Puffed rice and wheat Foods Restricted Anise Artificial colors Artificial flavors Bleached flour Cheese Chocolate Cinnamon Cloves Cocoa Margarine Preservatives Restricted fruits Some jams, jellies Any food made with or cooked in oils with hydrolyzed lecithin, BHA, BHT Commercial pie, pastry, and fillings Baking mixes Dry dessert mixes Vegetables Foods Allowed All pure fresh and frozen vegetables and juices except those listed Foods Restricted Pumpkin Sauerkraut Spinach Tomato and all tomato products All vegetables prepared with restricted ingredients Fruits Foods Allowed Fruits Apple Banana Cantaloupe (rock melon) Figs Grapefruit Grapes Honeydew Kiwi Lemon Lime Mango Pear Rhubarb Watermelon Fruit dishes made with allowed ingredients Foods Restricted Apricot Cherry Cranberry Currant Date Loganberry Nectarine Orange Papaya (pawpaw) Peach Pineapple Prunes Plums Raisins Raspberries Strawberries Fruit dishes, jams, juices made with restricted ingredients Meat, poultry and fish Foods Allowed All pure, freshly cooked meat or poultry Foods Restricted All fish and shellfish All processed meats All leftover cooked meats Eggs Foods Allowed All plain, cooked egg Foods Restricted All prepared with restricted ingredients Raw egg white (as in some eggnog, hollandaise sauce, milkshake) Legumes Foods Allowed All plain legumes except those listed Pure peanut butter Foods Restricted Soy beans Red beans Nuts and seeds Foods allowed All plain nuts and seedsFoods restricted All with restricted ingredients Fats and oils Foods allowed Pure butter Pure vegetable oil Homemade salad dressings with allowed ingredients Lard and meat drippings Homemade gravies Foods restricted All fats and oils with color and/or preservatives Hydrolyzed lecithin Margarine Prepared salad dressings with restricted ingredients Prepared gravies Spices and Herbs Foods allowed All fresh, frozen or dried herbs and spices except those listed Foods restricted Anise Cinnamon Cloves Curry powder Hot paprika Nutmeg Seasoning packets with restricted ingredients Foods labeled “with spices†Sweeteners Foods allowed Sugar Honey Molasses Maple syrup Corn syrup Icing sugar Pure jams, jellies, marmalades, conserves made with allowed ingredients Plain artificial sweeteners Homemade sweets with allowed ingredients Foods restricted Flavored syrups Prepared dessert fillings Prepared icings, frostings Spreads with restricted ingredients Cake decorations Confectionary Commercial candies Miscellaneous Food allowed Baking powder Baking soda Cream of tartar Plain gelatin Homemade relishes with allowed ingredients Foods restricted All chocolate and cocoa Flavored gelatin Mincemeat Prepared relishes and olives Soy sauce Miso Commercial ketchup Gherkin pickles Most commercial salad dressing Beverages Food allowed Plain milk Pure juices of allowed fruits and vegetables Plain and carbonated mineral water Coffee Alcohol: plain vodka, gin, white rum Foods restricted Flavored milks Fruit juices and cocktails made with restricted ingredients All other carbonated drinks All tea All drinks with “flavor†or “spices†Beer Wine Cider All other alcoholic beverages
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  8. I disagree. In my experience triptans will most definitely give me rebounds IF I take it numerous days in a row, but there have been plenty of times (and after close to 20 years of using triptans I can say PLENTY of times pretty confidently) that I have had a cluster, taken sumatriptan and did not have a rebound headache or increase in the severity of attacks. And yes, more than once I thought the same thing, stopped Sumatriptan for 6 months at a time and found no difference. Maybe this reaction is happening with you Denny, but I suspect it might be an individual sensitivity to triptans. Again, I disagree. I fully believe that taking opiates too many days in a row will give you rebounds, but I have had too many times where I ended up in the ER and the only thing that worked was opiates. The next day I did not get hit, and my attacks in general did not actually get worse in any way. I think this is important info because I think as a last ditch effort the opiates are very useful. If you end up in the ER, you are out of options and they offer you a shot of morphine should you turn it down because of the possibility of a rebound headache the next day? In my experience and opinion, as long as you have not been taking opiates much you will do yourself very little harm with an emergency shot of opiates. I would say that somewhere around 95% of the time that I take sumatriptan it gets rid of the cluster and does not in any way "rock me so bad" when it wears off. Sometimes the triptan does not work, I consider this to be a bad cluster and not sumatriptan rocking me. Triptans are not really released from any sort of receptor, they do trigger certain receptors to do certain things, but they are not actually released. The k receptor is a hallucinogenic opiate receptor and I have never heard of it being related to sumatripan or clusters. Do you have any info showing otherwise? In my experience this is not always true. I have taken sumatriptan, then less than 48 hours busted with psilocybin and it worked. I have done this more times than I can count. When I get to the point where I am taking sumatriptan for more than 2 or 3 days straight it seems to interfere with my bust and I need to make sure I get a good break from it. In my opinion, none of these statements are very helpful. You have your situation and other people have theirs. You can not guarantee any sort of reaction to anyone about anything. Telling people "stop triptans now" because they haven't worked well for you seems to assume that you know other peoples situation enough that you can tell them what meds they should just "Stop". That seems kinda arrogant to me. You can not say in any sort of surety that "triptans will set you up for disaster and a continuous headache cycle". Maybe you can say that about yourself, but there are a LOT of people that do not have this effect at all. It has been pointed out over and over on this site that we should all take as little sumatriptan as possible. That IS helpful. As far as "You are fooling yourself if you think they are helping" Again not very helpful and most definitely arrogant. You don't usually convince people of the merit of your ideas by calling them foolish. My bet is that if you do some serious research you are going to find very different ideas than the ones you have come up with. Maybe I am missing something though. I responded to that post earlier with a whole bunch of questions because I wasn't understanding what you were saying and I have to admit, after you answered me I was even more confused. Between the k receptors that are somehow receptors and molecules, the clusters being caused by clusters, the strange oxygen info, I could go on and on---it just doesn't seem to have much basis on any sort of factual evidence. The idea alone of K being a both a molecule and a receptor makes very little sense from what we know of biology, chemistry and science. Molecules bind to receptors because the molecule fits into the receptor just like a key in a lock. From everything we know, If the molecule and the receptor were the same it just wouldn't work--that would be like trying to fit a lock in a lock, instead of a key in a lock. I would research more about the receptors that get triggered by sumatripan and the receptors that are triggered by hallucinogens and look for correlations. -Ricardo
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  9. I started getting clusters when I was 16, just turned 39. I’ve just gotten through another 3 week cluster episode. I used to get them once a year lasting 3-4 weeks with 3-6 attacks a day. As I’ve gotten older it’s now every 2 years. Like clockwork. Early on, large doses of caffeine would sometimes abort a headache. I’ve tried all sorts of treatments, dangerous drugs, more recently verapamil and a corticosteroid. What I’ve found is that the headaches are just going to come. The verapamil will help for about a week, but then my body’s back on the clock to make sure I get a solid 3 weeks even with the interruption. Tactics I’ve learned over the years: breathing hot steam at the onset can give some relief in the very early stages; playing tricks with time - I’ll take whatever drug I have available, usually zomig nasal spray, and tell myself it will start to help in 5 minutes (which it doesn’t) just any kind of trick in my mind to get me through the time; lots of pacing, rocking on hands and knees; this past attack I decided to try pot. I’ve never done it before but honestly I think it was the most effective tool I’ve used to get through the pain. There is nothing that helps during the height of the pain, but it relaxed my body and I was actually able to lay down for the majority of a headache, which is a miracle for me. It would also help me go to sleep. The terrible anxiety, fear and depression that come along with the cycles is all part of it for me. Being able to lay down and go to sleep despite knowing I’ll wake up in panic at 1:00 A.M. is huge. Sorry, this is my first time to post and this is long. Much love to you guys out there going through this. It gives a person a special perspective on suffering for sure.
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