kirstired Posted October 15, 2016 Share Posted October 15, 2016 Hi all, I have been here before but lost my password and username. I suffer from episodic cluster headache, I usually have a 2-6 month cycle every three years. I am constantly on the lookout for any information regarding treatment because as you all know, the pain list life ruining and soul sucking. I have to get through my cycles with oral Imitrex, lots of water, and oxygen; which is not all that effective but it helps me survive. I tried the vitamin combination that was described here but it didn't help. I read an article today which said a ketogenic diet has helped migraine sufferers including cluster patients. I'm on my phone and am not sure how to link the article. Have any of you tried this? Or heard about it? I would follow it to the letter if there was a chance I could break a cycle. Quote Link to comment Share on other sites More sharing options...
CHTraveler Posted October 15, 2016 Share Posted October 15, 2016 Hey, sorry to hear that O2 doesn't work very well for you. I know that there are some who don't respond so well with it, but I nearly always get significant relief from it. Are you sure you're using a high enough flow? For harsh attacks I find that super high flow is necessary. Regular acupuncture and lots of magnesium are also part of my strategy, and I've had positive results. Also, as much as I wish I could go all-natural with my approach, I recently had good results with prednisone therapy. Unfortunately I can't help you with any info on the effectiveness of the diet in reducing CH. I had a brief look online--seems there is a lot one can eat. I haven't heard of this before, but maybe it's worth trying out. I would have a bit of trouble because I don't eat meat, but if you do, it seems like there's reasonable variety. If you decide to do it, good luck! I hope you'll share your experience... Quote Link to comment Share on other sites More sharing options...
Bob R Posted August 15, 2018 Share Posted August 15, 2018 Hi. I'm new on this forum, but wanted to share some thoughts on the ketogenic diet. My 20 year old son has had episodic cluster headaches for the past three years. I would do anything to provide him and anyone suffering from cluster headaches some relief, which is the reason why I am writing. I recently read a journal article from a group of researchers out of Italy who placed 18 chronic cluster headache patients on a 3 month ketogenic diet. Of the 18 patients, 11 experienced full resolution of their headaches and 4 had a headache reduction of at least 50%. Here is a link to the study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5816269/ I realize that this is a small sample size and the results are positive but preliminary. But I wanted to share this information, so that others may be able to benefit. We have a family friend who has chronic cluster headaches. I worked with her to put her on a keto diet in June and she has improved dramatically, although she is also on Verapamil and a vitamin regime. She temporarily went off the diet at a wedding and immediately noticed a shadowing effect of an impending cluster headache. Please note: The keto diet may not be for everyone. There are some contraindications (e.g. diabetes) to the keto diet, and you can Google them. If needed, please check with your health care provider before trying it. Since most doctors know very little about nutrition, they may try to talk you out of it. For those of you who are interested in trying this food plan and are unfamiliar with it, the diet is roughly 75% fat, 15% protein and 10% carbs. The study used 10 grams of carbs per day for the first month and 20-30 grams of carbs for the second and third months. This is a pretty drastic change from the way that most people currently eat, so perhaps 50 grams of carbs per day is a good starting point if you don't want to go lower than that. Ketones are a source of caloric energy used by the brain, heart and muscles similar to glucose (sugar). They are produced in the liver as a by product of fat metabolism when insulin and blood sugar are low. Insulin spikes after we consume high carb/sugar foods and drinks, which is bad for the body. No need to count calories. Eat until you are content, or better yet, stop eating when you are 80% full. The good news is that you will stay full longer on a fat based diet than a carb based diet, so chances are that your appetite will not require you to eat every few hours. A carb diet is like building a fire with leaves and pine cones. There is an initial burst of flames (energy) but the fire dies out very quickly. In order to keep the fire going, you need to constantly add more leaves and pine cones (in other words, keep eating more carbs). A fat based diet is like building a fire with wooden logs. The fire burns for a long time without having to add to it. The human body can store about 2,000 kilocalories of carbohydrates and about 40,000 kilocalories of fat. The goal of keto is to burn the fat stores that we all have, as a form of energy. But we can't get to the fat stores if we are eating muffins, donuts, bagels, etc. and drinking sugared drinks, and the body is working hard just to manage the extra sugar in our systems. As you are transitioning to a ketogenic diet, some people go through the "keto flu". You may not feel so great at the beginning, but after a few weeks, will really notice the difference. Even if it doesn't help with cluster headaches, there's a very good chance that you will have more energy, more mental clarity, lose some weight and see other favorable outcomes. Here are some references for you: Keto food list: https://www.marksdailyapple.com/keto/shopping-list/ Keto recipes: dietdoctor.com Thought leaders in the keto world: Jeff Volek, Steve Phinney, Jason Fung, Tim Noakes, Mark Sisson (marksdailyapple.com). Feel free to google them and/or watch their videos on You Tube. Good luck and I hope this helps you! 1 Quote Link to comment Share on other sites More sharing options...
AlbertoBeck Posted January 29, 2020 Share Posted January 29, 2020 " Cherubino di Lorenzo: The ketogenic diet is a particular nutritional regimen that mimics starvation by restricting carbohydrate intake. It was developed 95 years ago in order to treat drug-resistant epilepsy in children. Traditionally, the ketogenic diet is rich in fat and low in carbohydrates, but in the past decades another type of ketogenic diet was developed to treat obesity and metabolic syndrome: the low fat (10-15 grams/day) low carb (20-50 grams/day) diet, also known as the very low calorie ketogenic diet (VLCKD). RG: What does this diet do to the body and the brain in particular? Di Lorenzo: During a ketogenic diet, carbohydrate restriction induces the fat metabolism to produce so-called ketone bodies. These ketone bodies act as a replacement for carbohydrates and fuel several types of cells, including neurons. In the classic ketogenic diet, the fat that’s taken in with the food is the source for the production of ketone bodies . In the very low calorie ketogenic diet, however, the ketone bodies are produced from fats in adipose tissue. You could think of this process as the body’s own biochemical liposuction. Each molecule of ketone bodies produces more energy than glucose, but less oxidative stress, so the brain and the muscles work more efficiently. This effect of ketone bodies as energetic boosters is very important in migraine patients, or migraineurs, because they have an energetic deficit in the brain. Ketone bodies also have an anti-inflammatory effect. This is also important because ‘sterile inflammation’ - inflammation caused by damage rather than by microbes - is at the heart of migraines. The ketone bodies dampen the neural inflammation that’s both common in epilepsy and migraines and modulate the cortical excitability, the firing rate of neurons. RG: How did you get the idea to study the effects of a ketogenic diet on migraineurs? Di Lorenzo: Our interest in ketogenic diets was born in 2009. A common side effect of most drugs for migraine prophylaxis, including antidepressants, anti-epileptics, calcium antagonists, and beta-blockers, is weight gain. The problem: increased weight can also worsen headaches in these patients. For this reason, we recommended that overweight patients see a dietician prior to or during preventive treatment. One of these dieticians, Giulio Sirianni, observed that patients who underwent very low-calorie ketogenic diets had fewer headaches. In most cases, the headaches even disappeared during the ketogenic phase of the diet. RG: How did you study the diet on your patients? Di Lorenzo: After we saw these effects, we decided to confirm our findings in a large population of patients. We studied two groups of migraineurs who visited the dietician for the weight-loss and evaluated the effect of a ketogenic and a non-ketogenic diet on their migraines. Our dietician strictly followed the protocol of an Italian Society of Medical Dieting (SDM) that says to restrict the ketogenic diet to one month, followed by a five month long non-ketogenic phase of dieting. We observed that the headaches dramatically improved only during the ketogenic phase of the diet, and worsened again at the end of that month. We concluded that the ketogenic diet was the reason for that improvement. However, we are not sure that the reason why the ketogenic diet works so well in our patients is only due to the ketone body production. In fact, we have observed that in a majority of cases, our patients also show abnormal results in oral glucose tolerance tests both in the way their blood sugar and their insulin levels responds to sugar intake. Since carbs are a form of sugar, a low-carb diet could mitigate these responses. Our hypothesis is that the combination of ketone bodies and changed glucose response could lead to the outstanding therapeutic effect we have observed in our patients. More recently, we found similar results for non-overweight migraineurs and patients with the most severe form of headache, cluster headache, who consumed a high-fat ketogenic diet with normal calorie intake. However, we found that the diet is not effective in tension-type headaches and cervicogenic headaches, a form of headache that originates in the bone or soft tissue of the neck. RG: What’s the next step in your research? Di Lorenzo: Next, we’d like to study the positive effect of ketogenesis on chronic migraine patients (more than 15 days of migraine per month) for prolonged periods and on drug-resistant episodic migraineurs, and patients who do not respond to common prophylactic treatments, in a more comprehensive way. We’d also like to explore the influence of ketogenic diet on the cortical excitability of migraineurs. Currently, we’re conducting an ongoing a double-blind study on obese episodic migraineurs. RG: Would you advise migraine patients to try a ketogenic diet? Di Lorenzo: Currently, we advise the ketogenic diet in its hypocaloric form for overweight and obese migraine patients, and for all drug-resistant migraine and cluster headache patients. I don’t know why, but it is very rare to find an obese person among cluster headache patients. In our experience, motivated patients don’t find it difficult to follow a ketogenic diet, especially since there are fewer side-effects and adverse events compared to common preventive pharmacologic treatments. RG: Ketogenic diets are also popular for weight-loss and endurance. Would you recommend the diet to people without medical indication? Di Lorenzo: There are no particular risks for patients who follow the diet. Apart from type I diabetes patients, there are not contraindications for it. As I mentioned, the ketogenic diet is better tolerated than common pharmacological prophylactic treatments. The most common side effects are mild to moderate gastro-intestinal symptoms, easily managed with over-the-counter products. Some migraineurs reported hair loss as a side effect. This is strange because this symptom was never reported by any other populations of patients. I know hundreds of patients who have followed a ketogenic diet for weight loss and endurance performances under medical supervision without a problem. I do, however, recommend professional medical supervision. If the diet is done incorrectly, it might be unhealthy. That’s why some counties regard ketogenic diets as unsafe, but this is not my experience. Personally, for patients with metabolic syndrome and risk factors for cerebrovascular accidents, I recommend the very low ketogenic diet as first-choice treatment, perhaps in association with Aspirin, before any other pharmacological treatment. " Quote Link to comment Share on other sites More sharing options...
kat_92 Posted January 29, 2020 Share Posted January 29, 2020 @kirstired I’m sorry you don’t have significant results with O2. I don’t have access to the article but @Batch knows everything about the diet and d3 regimen. He continues to state that a Keto diet is essential to get maximum relief from the vitamin regime Quote Link to comment Share on other sites More sharing options...
Pebblesthecorgi Posted October 9, 2020 Share Posted October 9, 2020 Great post. This is one of those cost benefit things where theres no down side. Keto diet is tough for the carb lover. I hope folks who try this provide feedback. Quote Link to comment Share on other sites More sharing options...
freester Posted October 10, 2020 Share Posted October 10, 2020 (edited) I tried the keto diet and I’m thin and lost a lot of weight but it didn’t help my clusters one bit. Edited October 10, 2020 by freester 1 Quote Link to comment Share on other sites More sharing options...
MaxHead Posted November 30, 2020 Share Posted November 30, 2020 I would recommend that anyone check with your GP before trying this diet. There are potential downsides including possible liver or kidney problems. These can likely be mitigated if known. Especially with all the meds most of us Clusterheads have been taking at one point or another, some liver or kidney damage isn't a stretch. Be safe out there! Quote Link to comment Share on other sites More sharing options...
AlbertoBeck Posted December 31, 2020 Share Posted December 31, 2020 The thing that I love most about ketogenic diet is it helps in losing weight without doing exercises. People do exercises and often become hopeless when they see no results. In fact there needs a lot of expertise to perform perfect exercises in order to achieve maximum results. If you are vegan then you might not impressed from keto diet which is based on sources of fats like meat and dairy. I'd suggest to follow these https://sportsinside.co.uk/blogs/post/11-best-tips-for-quick-vegan-weight-loss vegan diet tips if you want to lose weight, otherwise there are a lot of diet plan out there and customization of those is the final solution to achieve fitness goals effectively. Quote Link to comment Share on other sites More sharing options...
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