johncluster Posted March 13, 2019 Share Posted March 13, 2019 About 1.5y ago I have posted that I managed to completely eliminate my CH by changing my diet. Please read my original post , by clicking my user name . I was on my diet for about 15 month without a single CH. About 3 month ago , I started to feel comfortable that CH are gone forever and started to eat everything again : fast foods, chocolates etc About 2 month ago my CH were back , on daily basis. That lead me to believe that my poor diet was triggering the CH. So right away I went back to my original diet . After 1m on my diet (details in original post) My daily CH disappeared once again . I would be curious if someone tested this theory , maybe there is some filler , chemical or coloring that is a huge trigger in our food. It may take about 1m for it to work , based on my limited experiences. I also eliminated about 6m ago vit D,Mg and all the other supplement , bc I thought that there might be fillers as well that could trigger my new attacks. I hope some one tries it. It is also important not to have any cheat days during the test. Best regards. 1 Quote Link to comment Share on other sites More sharing options...
dmlonghorn Posted March 13, 2019 Share Posted March 13, 2019 I've been on a strict Paleo diet for the last 7 months (which it sounds similar to what you did) and it has worked wonders for everything but clusters. My Spring episode just started, womp woommmp! Quote Link to comment Share on other sites More sharing options...
johncluster Posted March 13, 2019 Author Share Posted March 13, 2019 8 hours ago, dmlonghorn said: I've been on a strict Paleo diet for the last 7 months (which it sounds similar to what you did) and it has worked wonders for everything but clusters. My Spring episode just started, womp woommmp! Do you have any cheat days? a piece of chocolate or ice cream , here and there? When I cheat , even a small piece of chocolate would trigger it and I ruined everything. Even 1 piece of potato chip, I also find out , that sometimes even a piece of fruit was an instant trigger, I had to eliminate bananas and apples during certain cycles. Quote Link to comment Share on other sites More sharing options...
dmlonghorn Posted March 13, 2019 Share Posted March 13, 2019 No real cheat days to speak of. I did the diet modification to impact my Rheumatoid Arthritis, which it did, I no longer require medication (plaquenil / methotrexate). I'm thankfully only getting two cycles / year, so I don't have a large CH dietary pool of data to pull from. It sounds like you could really nail down your triggers with a Whole 30-type approach to your diet, slowly adding items back in, evaluating their impact - if you were so inclined. For me (and the family), it's no longer a "diet" - it's simply how we live/eat and we couldn't feel better! Although, I fear we're a couple Netflix documentaries away from becoming vegan, ha! I'd be interested to see how your trial and error evolves, please keep us posted. Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted March 14, 2019 Share Posted March 14, 2019 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 1 Quote Link to comment Share on other sites More sharing options...
johncluster Posted March 15, 2019 Author Share Posted March 15, 2019 I was thinking about that too, that may new cycle just started. I don't have enough trials to make any concrete conclusion. I has worked 2 times for me , so far, but each time basically . That's why I wanted more people to try it. Me as well as most ppl on this forums are skeptics and we don't easily fall for special cures and other non-sense. But I just wanted to share what worked for me. And the diet itself isnt anything drastic, basically ,: no sweets and just good old home made foods , but no deep fried food. I also don't believe that food itself cured me, but that there is some chemical used in preparation that was a trigger, so I still believe that I have CH but they are not triggered anymore. I'll look into tyramine. Quote Link to comment Share on other sites More sharing options...
johncluster Posted March 19, 2019 Author Share Posted March 19, 2019 So I decided to abandon my special diet just to test if it was the end of a cycle responsible of for the lack of lack of CH. I ate some fried chicken and potatoes. 1m after finishing I had a CH. really bad one. For the next 3 days I went on a diet again , I only ate home made baked potatoes with little butter . No headache. day 4 still no CH,,on a diet. I would really like to get more people interested in this approach. I'm not selling anything and never will, but I think that people who get a CH 1m to 2h after eating might benefit, bc there it seems food related. 1 Quote Link to comment Share on other sites More sharing options...
Freud Posted March 19, 2019 Share Posted March 19, 2019 I wish mine were related to eating but I have found no such correlation. I get hit the same 3 times a day and it’s usually before meals. Plus random ones in the middle of the night. Keep us posted. Quote Link to comment Share on other sites More sharing options...
johncluster Posted March 19, 2019 Author Share Posted March 19, 2019 1 hour ago, Freud said: I wish mine were related to eating but I have found no such correlation. I get hit the same 3 times a day and it’s usually before meals. Plus random ones in the middle of the night. Keep us posted. I had the random ones too, and those 1am -2am CH as well. But they were happening only on the days when i had my food related CH. But anyway if my post helps even 1 other person i'll be happy. Vit D terapy didnt work for me at all. perhaps bc of the additives in the pills which were triggering more CH. Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted March 19, 2019 Share Posted March 19, 2019 JohnCluster, Sounds like you're going about it the right way. Try one thing, then another. Keep good notes. On Tyramine: It's the chemical created when food breaks down. Anything fermented is high in tyramine, alcohol, fermented cheese, aged and preserved meats etc. A person could eat a really... really fresh steak and be just fine, but have one that's close to it's expiration date and it'll be high in tyramine and would be a trigger. Bananas are the same. Eat them when they're almost green and all's ok. Eat banana bread and watch out... I think that's why some people find some odd foods are triggers, but the same food isn't a trigger for another person. It's more about the age of the food, not necessarily what it is. But again, anything that's fermented or aged, is going to be high on the trigger list. Cheers, J 1 Quote Link to comment Share on other sites More sharing options...
johncluster Posted March 19, 2019 Author Share Posted March 19, 2019 52 minutes ago, ThatHurtsMyHead said: JohnCluster, Sounds like you're going about it the right way. Try one thing, then another. Keep good notes. On Tyramine: It's the chemical created when food breaks down. Anything fermented is high in tyramine, alcohol, fermented cheese, aged and preserved meats etc. A person could eat a really... really fresh steak and be just fine, but have one that's close to it's expiration date and it'll be high in tyramine and would be a trigger. Bananas are the same. Eat them when they're almost green and all's ok. Eat banana bread and watch out... I think that's why some people find some odd foods are triggers, but the same food isn't a trigger for another person. It's more about the age of the food, not necessarily what it is. But again, anything that's fermented or aged, is going to be high on the trigger list. Cheers, J I start to think , you might be right about tyramine. Have never ever heard anyone mentioning it. When In cycle, bananas are instant trigger, so are the apples, any sort of chicken,,cheese , yogurt, Quote Link to comment Share on other sites More sharing options...
johncluster Posted March 21, 2019 Author Share Posted March 21, 2019 On 3/19/2019 at 11:40 AM, ThatHurtsMyHead said: JohnCluster, Sounds like you're going about it the right way. Try one thing, then another. Keep good notes. On Tyramine: It's the chemical created when food breaks down. Anything fermented is high in tyramine, alcohol, fermented cheese, aged and preserved meats etc. A person could eat a really... really fresh steak and be just fine, but have one that's close to it's expiration date and it'll be high in tyramine and would be a trigger. Bananas are the same. Eat them when they're almost green and all's ok. Eat banana bread and watch out... I think that's why some people find some odd foods are triggers, but the same food isn't a trigger for another person. It's more about the age of the food, not necessarily what it is. But again, anything that's fermented or aged, is going to be high on the trigger list. Cheers, J there goes my diet theory ,,well I had a good run for 2y,,,,why is that every time you figured it out it stops working. CH are back even on a diet Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted March 21, 2019 Share Posted March 21, 2019 JohnCluster, Sorry to hear you're back in the throws of the beast. A low tyramine diet should definitely help reduce your attack frequency and intensity. Busing is definitely the best cycle terminator around. PFW, J Quote Link to comment Share on other sites More sharing options...
Milelli Posted March 21, 2019 Share Posted March 21, 2019 I am very sorry to hear that! I myself have found release by avoiding histamine. Did you eat something or somewhere else than usually? Maybe there was a hidden trigger. Cheers, M Quote Link to comment Share on other sites More sharing options...
johncluster Posted March 21, 2019 Author Share Posted March 21, 2019 1 hour ago, ThatHurtsMyHead said: JohnCluster, Sorry to hear you're back in the throws of the beast. A low tyramine diet should definitely help reduce your attack frequency and intensity. Busing is definitely the best cycle terminator around. PFW, J The problem with busting for me is the complicated process or growing it. I watched those 4 part youtube videos, recomended on this website , but the process seems so complex, that I would not be able to follow it I think. way too many steps for me to follow. Quote Link to comment Share on other sites More sharing options...
johncluster Posted March 21, 2019 Author Share Posted March 21, 2019 11 minutes ago, Milelli said: I am very sorry to hear that! I myself have found release by avoiding histamine. Did you eat something or somewhere else than usually? Maybe there was a hidden trigger. Cheers, M I am currently on potatoes only diet, and the minute I finish my meal , the CH comes,,,,. Even my potatoes only diet that used to work , stopped to work 2 days ago. Why does CH comes the second I finish my meal? Any ideas? What should I try next? green salads only? rice only,, I am running out of options here,,if this continue I will lose my job for good. I can't keep taking triptans daily and keep breathing O2 on the job ,,,thanks for any help. Quote Link to comment Share on other sites More sharing options...
Freud Posted March 21, 2019 Share Posted March 21, 2019 Milelli, below is a link to a post I made regarding alternative methods to grow mm that are a lot easier. If memory serves me correctly you don’t live in the states. The suppliers I have listed are all in the states. If you live in Europe there are several reputable sites out of the NL that sell smallish tubs that are already colonized and growing is extra simple. Let me know if you want more info on that. Mad for growing I think the methods explained by WillyMyco in his videos are a bit less cumbersome and have better yields than the videos you previously watch (the PF Tek, aka BRF cakes). It’s just my opinion others here have great results using that method. I buy all my supplies ready to go (sterile or pasteurized depending on the product) so I eliminate a huge source of error and contamination. So everywhere where Willy refers to making ryeberries or bulk substrate don’t stress it you can just buy it. Let me know if you have further questions, start a new thread in the theory and implementation section. Here is the link to my post: https://clusterbusters.org/forums/topic/5874-alternative-grow-methods-for-mm/?tab=comments#comment-58716 Quote Link to comment Share on other sites More sharing options...
Milelli Posted March 21, 2019 Share Posted March 21, 2019 2 hours ago, johncluster said: I am currently on potatoes only diet, and the minute I finish my meal , the CH comes,,,,. Even my potatoes only diet that used to work , stopped to work 2 days ago. Why does CH comes the second I finish my meal? Any ideas? What should I try next? green salads only? rice only,, I am running out of options here,,if this continue I will lose my job for good. I can't keep taking triptans daily and keep breathing O2 on the job ,,,thanks for any help. Since how long you are on that potato diet? Usually it takes some time to start working. Indeed the second after you finish the meal is very early. Usually one can consider at least 30 min to get the substances from your stomach to your bowel or even more, I am not an expert,, I know that stress also releases the histamine (and I guess the same applies for tyramine and other biogenic amine) from mastcells into your body. So since this diet really seems to helped you, the first thing is to dont't panic and to reduce stress! Maybe the strict diet will bring you back on the track. I am sorry but this is currently everything I come up with and I know it's not a big help but I ask me the same questions everyday. Cheers, M Quote Link to comment Share on other sites More sharing options...
johncluster Posted March 21, 2019 Author Share Posted March 21, 2019 I am not stressed, and I wake up very optimistic hoping yesterday was the last day with CH , until I finish my food,,and 1-5min later It is coming on , I've been on potato only diet for about 5-6 days,,but I've been on a very strict diet: no processed food, no fried food, no sweets,,for about 1.5y with a great sucess, until about 10day ago,,, Quote Link to comment Share on other sites More sharing options...
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