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ClusterSwarm

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Everything posted by ClusterSwarm

  1. ClusterSwarm

    Age? Altitude? Verapamil? Zomig? Exercise?

    What worked for me was completely cutting out caffeine coupled with a super low histamine diet. Be patient! It takes a few weeks then hopefully like myself and many others your golden. Don’t cheat ! Has to be zero caffeine and super low histamine foods. Good luck!
  2. First off I want to say that I want to thank you all. For years I’ve been trolling your forum and I have used so many of your tips and methods. Thank you I think it would be best to start out with how we got here so stick with my. Btw I’m no writer so please don’t be to hard on me. Im 40 years old and I have suffered with clusters since I was 14-15 years old. My family sent me to the best doctors money could buy. All the medical industry could offer me was drugs. I’m sure all of you know the story with primary care physicians . Truth be told I’ve tried everything. When I say that I mean it. I’ve eaten or injected so much meds and drugs that about ten years ago it started to ware on my health. Then I found forums and found oxygen. The oxygen saved my life literally. I get emotional just thinking about it . After years of trial and error with food and vitamins I saw on one of your forums some people were using Benadryl. You guys No the drill as soon as you see another would be cure of course the first thing you do is stop at the store pick it up and take it that night as soon as the monster comes. This was about two years ago. One thing I want to say is that I am no doctor I’m a mechanic. Once I read that people were using Benadryl and getting some relief I started to really dig deep into histamines and the more I read about it the more I realize that some foods and some drinks are toxic. Not toxic in a way that you eat it or drink it and you immediately get sick but toxic in a way that overtime you could have an adverse effect on your health. So I did a search and I studied for weeks what foods contain histamines that are bad for humans and any of you can do a simple search and find the same and one of the main things that I used to use to help with the pain from my cluster especially the day after was coffee or tea. As soon as I cut out Coffee And tea ie caffeine With a full list of histamine rich foods like sausage sandwich meat and things of that nature I noticed an immediate difference I was beginning a cluster cycle and normally my cycles are from 1 1/2 to 3 months I was into my first week and after about 5 to 7 days my cluster is faded away. Please don’t get me wrong I’m in no way saying that this will work for everyone all I can tell you is I haven’t had a break since I was about 15 years old and now I’ve gone for almost 2 1/2 years with no problem . When you try what I did don’t be tempted after a couple days to give up and go straight back because your headaches don’t go away right away things that are toxic in your bloodstream take some time to get out so give it a week or two what if you got to lose. I really hope this helps somebody because cluster headaches are no joke I can’t tell you how many times I thought about ending my life. Thanks for listening
  3. ClusterSwarm

    This helped me- hopefully will help others

    Your response meets the status quo treatment for newcomers. Thanks!
  4. ClusterSwarm

    This helped me- hopefully will help others

    “Lets just back off this whole thing gang” I think I was clear. For folks that have their mind already made up and don’t think what worked for me will work for them just steer clear of the thread and save yourself the aggravation.
  5. ClusterSwarm

    This helped me- hopefully will help others

    That’s of course unless it helps people. I’m not trying to break up your club I’m trying to help people. If your closed minded just stop clicking on the thread .
  6. ClusterSwarm

    This helped me- hopefully will help others

    calm down , have some dip!
  7. ClusterSwarm

    This helped me- hopefully will help others

    If you truly care for people the way you say you all do then stop stifling anyone that come in with a different point of view on how this can be approached. I’m not the only one who was cured with this technique. I waited a long time before recommending this to anyone to prove that it works to myself. Because of this diet change I’m now finally living a normal life. Over 1500 people have viewed this thread and hopefully a handful will give this a true shot. I listened to a total stranger on a thread the same way and it ended well over 20years of suffering. Let me give you naysayers a little advice! Done knock it down until you’ve tried it . Also don’t bash people that might be on to something because you’ll keep people in the shadows.
  8. ClusterSwarm

    This helped me- hopefully will help others

    “We don’t need no education”
  9. ClusterSwarm

    This helped me- hopefully will help others

    It seems like a loaded question. Simple answer is, you don’t need to bust anything if they don’t happen. The same way fat people can’t stick with the diet to lose weight is the same exact thing that I’ve noticed about cluster headache victims. They just can’t stick to a diet and I damn sure can’t give up fixes that they know in the long term is going to hurt him re-read my thread that I reposted
  10. ClusterSwarm

    This helped me- hopefully will help others

    For me it was just a simple lifestyle change. Sure I gave up some of my favorite things to be honest the main one that I miss is coffee and tea because I was an addict but I’m past that now and I just supplement my simple fixes with healthy drinks and I just deal with it and I’m OK with that. I think the main thing that people don’t do when they try this method as they see that their clusters are in remission and then they immediately say well this is great I’ll just go back to normal and when the clusters happen again I’ll give up those things but the way I read it is That’s not how it works it’s a slow build up and that’s why it takes so long for the clusters to go away so you have to Chyna just stick with it permanently and that’s that
  11. ClusterSwarm

    This helped me- hopefully will help others

    You should give it a shot! Changed my life
  12. ClusterSwarm

    This helped me- hopefully will help others

    Thank you sgh! Mall I have been trying to say was that I’ve tried everything you can imagine and even things you wouldn’t want to imagine. It was only when I coupled the low histamine diet with giving up caffeine that my clusters stopped. I went through hell since I was a kid and if I could maybe help at least one person it would be worth it. I believe that people like me can’t tolerate too much histamine rich foods. And you couple that with caffeine and boom you get a nuclear explosion in between your ears.
  13. ClusterSwarm

    This helped me- hopefully will help others

    No man I get that. What I am asking people to try involves no illegal drugs or legal drugs. I knew I would catch hear from people who have given up on ever finding a true cure. All I’m saying is give it a shot what have you got to lose. Hundreds of people have viewed my post and hopefully a few will stick to it and find relief . I’m not trying to ruin there good time suffering together I’m just trying to reach out and help . If the old timers don’t like it I could care less.
  14. ClusterSwarm

    This helped me- hopefully will help others

    You can change the title to “ this has a one in a million chance at working” I could care less. If one person finds relief it was worth the fight .
  15. ClusterSwarm

    This helped me- hopefully will help others

    I think your twisting my words. All I’m saying is there are a lot of people going headache free by dumping all caffeine products and reducing the amount of histamine rich foods they take in. I know what these headaches feel like and there are a lot of people taking in caffeine to help relieve the pain and it does help “short term” but the long term affects are more headaches and longs clusters. Im trying to help people. Further more my title was “ this help me hopefully it will help others” so for people to say I’m misleading thru my title and “we could have a had a conversation “ go back and re-read the title. I think it’s pathetic that your knocking this approach before you’ve tried it .
  16. ClusterSwarm

    This helped me- hopefully will help others

    What have you got to lose? Try it . Major point is to start cutting out the caffeine right away then cut down on the histamine rich foods.
  17. ClusterSwarm

    This helped me- hopefully will help others

    This is working for a bunch of people
  18. ClusterSwarm

    This helped me- hopefully will help others

    a guy named eagle on cluster headaches.com
  19. ClusterSwarm

    This helped me- hopefully will help others

    “ low histamine diet worked for me too! I just passed through my third cluster without a headache. Few people outside our “community” know what a huge deal that last sentence is. It sounds like others have tried it without success but I would encourage people to give it a try. It’s been amazing for me. I’ve had regular spring/fall clusters for the past25 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 the fall. 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 my general understanding. 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.” Back to top
  20. ClusterSwarm

    This helped me- hopefully will help others

    I wouldn’t touch opiates with a ten foot pole! Sorry if I came across and sounded like an advocate. I’m saying we need to start thinking outside the box when it come to alternative methods and or diets to gain some ground on this monster.
  21. ClusterSwarm

    This helped me- hopefully will help others

    What’s “damn wrong” you lost me
  22. ClusterSwarm

    This helped me- hopefully will help others

    I think you missed the point. Everyone is waiting for this magical cure to come from some doctor. I suffered since I was a kid and I can tell you this not much is changed. All you have now that you didn’t have that as a few more chemicals and people are out there still suffering.
  23. ClusterSwarm

    This helped me- hopefully will help others

    There’s more than a few people out there that disagree with you. The treatments you have outlined I have tried for years. The only thing that helps is oxygen and histamine blockers. Don’t draw your line in the sand with doctors. Think outside the box. This is a savage illness.
  24. ClusterSwarm

    This helped me- hopefully will help others

    “Proper treatment” I’ve been to some of the best docs in the country and they have no clue what to do about clusters. All they can do is load you up with pain meds.
  25. ClusterSwarm

    This helped me- hopefully will help others

    So what makes the most sense is that us “cluster heads”are allergic to something?
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