This helped me- hopefully will help others

[Freud 284]

You’ve been a member here since 2013? Newbie?

[ClusterSwarm 1]

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.

[SHG 7]

I'm a member since 2013 but I was a silent member who rarely came and never commented until very recently. 

[Freud 284]

I personally could care less legal, illegal. If it works, it has no to minimal adverse reactions/ is safe then I’m all for it. But drastic lifestyle modifications may work for some, but not me. Food, sex, and sleep are some of life’s simplest pleasures. I’m not willing to give up all three. CH has robbed me of 2/3. I’m glad it works for you and I hope it continues to. 

[Brain on fire 417]

Just a suggestion... I'll suggest this in a similar topic as well. Use the magnifying glass to search for histamine dump (it may sound irrelevant, it is worth the time). Please take your time to carefully review all of the posts that come up via that search.

Warning!!!  The post contains the word "CURE" (not my caps) & the word 'cure' doesn't apply to cluster headaches... yet. Therefore the use of the 'C' word can trigger suspicion (particularly in a 1st post) and outrage.

Thanks.

[SHG 7]

Guys, I think there are some important things that needs to be said here.

First, histamine IS a trigger for CH, and in many cases foods high in histamine also contain other triggering agents. This includes all aged, preserved, smoked, cured, pickled and fermented  foods and drinks, that are also rich in tyramine.

Of course, this does not necessarily mean that a law histamine diet will make a noticeable change for many, but some may benefit. It won't help too many people because (a) histamine is only one common trigger out of many and (b) food is hardly the only source of histamine. Histamine is not only consumed but mostly manufactured in the body, especially during CH attacks.

Benadryl is beneficial for some people as a short-term preventative, because it inhibits H1 receptors in the brain. It's also useful to prevent Vitamin D depletion due to allergic reaction, which is crucial for the D3 regimen in some people.

So, not a cure and not for everybody, but Benadryl and low histamine diet may help some people. 

[Brain on fire 417]

I do hope folks read the post & all replies via the search, it addresses this in-depth

[ClusterSwarm 1]

58 minutes ago, SHG said:

Guys, I think there are some important things that needs to be said here.

First, histamine IS a trigger for CH, and in many cases foods high in histamine also contain other triggering agents. This includes all aged, preserved, smoked, cured, pickled and fermented  foods and drinks, that are also rich in tyramine.

Of course, this does not necessarily mean that a law histamine diet will make a noticeable change for many, but some may benefit. It won't help too many people because (a) histamine is only one common trigger out of many and (b) food is hardly the only source of histamine. Histamine is not only consumed but mostly manufactured in the body, especially during CH attacks.

Benadryl is beneficial for some people as a short-term preventative, because it inhibits H1 receptors in the brain. It's also useful to prevent Vitamin D depletion due to allergic reaction, which is crucial for the D3 regimen in some people.

So, not a cure and not for everybody, but Benadryl and low histamine diet may help some people. 

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.

[Freud 284]

It’s unclesr weather histamine is actually a trigger or they are elevated in the blood during an attack as the body responds to the change in physiology: pain triggers  the release of several substances. Histamine is probably released in response to some of these substances. And you end up w a positive feed back cycle until the attack ends.  I found this old gem while searching the web for histamine and CH. JAMA 1971!

 

edit: just found this too. It’s many of the substances released during a CH Positive feedback substances

Edited July 20 by Freud

[Brain on fire 417]

That is why I made the suggestion, link to the thread. Shucks! Just to a comment. Ya really have to read tge whole thread for context.

Edit: Link to the thread:

https://clusterbusters.org/forums/topic/1765-my-theory-behind-clusters/?tab=comments#comment-22598

 

Edited July 20 by Brain on fire
Correct link

[Brain on fire 417]

Hmm, on page 2 of this topic I edited my comment regarding the 2nd hand testimonial the original poster provided. Whopper of an eye opener.

[ClusterSwarm 1]

You should give it a shot! Changed my life

[Freud 284]

2 hours ago, ClusterSwarm said:

You should give it a shot! Changed my life

What will she stand to gain she is already PF, in remission so to speak?

[ClusterSwarm 1]

 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

[Freud 284]

13 minutes ago, ClusterSwarm said:

 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

This seems to address your triggers. Not for every one. But an accepted proven method of treatment is busting and BOF is pain free due to it. So what is there to be gained is my point. 

[ClusterSwarm 1]

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 

[Freud 284]

No thanks, I’ll stick w busting, “fat people” not so nice. Very tactful I see.  In my experience with busting and CH people they stick to it if it works for them. Busting doesn’t address triggers. It goes to the root cause. And like several people have told you your addressing a particular trigger for you. Please refrain from being rude!

[ClusterSwarm 1]

“We don’t need no education”

[Freud 284]

Search for diet in this site may be there is more than one you can try. Plenty of options out there maybe yours isn’t the best one. 

[Freud 284]

Just now, ClusterSwarm said:

“We don’t need no education”

Teacher leave those kids alone... a Pink Floyd fan?

[Freud 284]

And FYI, you’re only a victim if you allow yourself to be. Not my modus operandi.  

[Brain on fire 417]

On 7/19/2019 at 12:04 PM, ClusterSwarm said:

I’m not trying to ruin there good time suffering together

I only posted to this topic again when I saw what came up in the original poster's 2nd hand quote because misleading people who have any medical condtion that causes any person to suffer is cruel. We do not enjoy suffering. The original title included the word 'cured'. We know it is bad when admin feels the need to edit the title of a post. That is very rare & was done here. The original poster edited the original post repeatedly. Those are all red flags. I care for everyone who comes here looking for answers & offering suggestions. I enjoy seeing folks finding something that works for them, sharing it & continually updating their progress with it. Because that simply isn't what happened here I will not comment further on this thread. Best of luck to you ClusterSwarm, I hope this continues to work for you forever.

[ClusterSwarm 1]

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. 

[Freud 284]

There you go using the “C” word. Again, unfortunately you don’t learn. You didn’t cure anything, you eliminated a trigger for yourself. Your brain is just as fed up as ours, may be more. That’s great you found your major trigger. But. Triggers change, not everyone has the same triggers.  keep in mind this is a site about busting, over the years people have added other helpful things, but this isn’t ch.com.  So when you start posting about a “cure” and refuse to stop using the word you really offend people here!  God knows we all want a cure but what you found is no cure.  Even though (to the best of my knowledge) @Psiloscribe Has not had a CH in years he doses 2x a year but would NEVER say he has a cure!  Same goes for @Batch with his amazing (data driven!!!) results with his vitamin D protocol would never have the bravado to claim a “cure”.  You are in a site that was created specifically for busting, as a separate site from CH.com for the purposes of sharing knowledge about the use of psychedelics to treat (NOT CURE) CH. so when you come here saying you have a cure, don’t want to hear anything about busting, and still claim you’ve cured yourself. I again think you need to do a quick search (upper right of your screen) for “cure” start with the oldest posts first and work your way up to your cure...  

[ClusterSwarm 1]

calm down , have some dip!