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This helped me- hopefully will help others


ClusterSwarm
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28 minutes ago, ClusterSwarm said:

….I’m saying we need to start thinking outside the box when it come to alternative methods.....

...umm......well...I kinda thought that's what CLUSTERBUSTERS.org was all about...………………...

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@jon019 I couldn’t have said it better myself!  For some reason even with the blue button this place is being treated like ch.com and not cluster “busters”. Even after you educate people what this place is all about they still want to reinvent the wheel. I get that some people won’t do anything illegal, and even resort to brain surgery. But as cluster survivor states in his YouTube video he regrets his decision and old logic bc busting changed his life...  

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6 hours ago, Freud said:

Telling most people here to give up caffeine isn’t an option. They rely on energy drinks and shots to help abort a CH. it doesn’t work for me but helps a lot of people here. 

Which of the two doesn't - caffeine or energy drinks? Some effect or no effect?

 

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15 hours ago, Brain on fire said:

Thanks, we like 1st hand reports.

Great! Got any statistics for us? Research?

To be fair - many treatment options are only researched after there's anecdotal report of a surprising recovery. I think if ClusterSwarm had come here and told his story, with less interpretation and a better title, it could have lead to an actual conversion. 

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For sure, many have come here making the same claims about keto diets, but like you said. Some things work for some people some times. Then wala, their “cure” doesn’t work any more. I’ll stop spamming this thread and the other cure thread. It just erks me when people come here touting cures and don’t even know what busting is or have never tried it.  For the life of me I don’t understand why they aren’t willing to try it. No drastic life style modifications, just a few doses and wala, most episodics can abort a cycle....

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ClusterSwarm,

I think what you have stumbled across are trigger foods, not necessarily a cure.  It's a known fact that foods high in a chemical called Tyramine are highest on the CH trigger list.

Alcohol, Chocolate, Fermented Cheeses (the processed stuff is ok, since it's not really cheese and not made by fermenting milk), Aged or preserved meats, etc.  All of these are high in Tyramine, as Tyramine is a byproduct of food breaking down.  Case in point:  One person might be able to eat a banana without a CH attack, but another person it's a trigger for a CH kipp 10 attack.  Why?  One person ate the banana when it was just starting to ripen (low in Tyramine).  The other ate the banana when it was fully or overripe.  The overripe banana is VERY high in Tyramine.

Now, why Tyramine is a primary trigger has yet to be identified, but it's a fact that foods high in Tyramine are also the most common CH food triggers.

Cheers,

J

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@SHG I have a carried response to oxygen. Sometimes it works and others it does not. I’ve tried all different breathing techniques and such but the only thing that made a difference was getting 25LPM regulators. My response to psychedelics is varried bc if a med that I was on that is a strong blocker and has a 16.5 month elimination time. My last dose was oct 2018 so I’ve got some time until I can really say they work or don’t work for me. Lately I have gotten a much needed reduction of my nocturnal attacks but I’m dosing every 5-7 days again. Other than not responding to the caffeine/ energy stuff. I’m pretty normal on my responses. 

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  • ThatHurtsMyHead changed the title to 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 .

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ClusterSwarm,

I rarely ever edit posts, but I changed the title from "Cured" to "helped".  Claiming a cure is a bit of a sore spot with Ch'ers.  Many have claimed to be cured, and rarely does the said cure work for anyone else, or it stops working for the person claiming the cure.  

CH is a nasty condition.  It changes all the time.  When I was episodic I went 2 years between attacks (cycles) once and other times it was 1 month between cycles.  It's great that you think you're cured.  It's always good to stay positive.  Just remember that CH does just stop (or pauses) for most everyone from time to time.  It's just what it does.  No one knows why.

Cheers,

J

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I've managed to prevent most of my nocturnal attacks with either Amitriptyline (25mg),  Melatonin (2-7mg), oral Imitrex (25-50mg) or combinations of them. I used to have episodes of 8-15 weeks with 1-3 hit every night, for years. That's on top going on and off of being chronic in the past 20 years, and episodes that included 3-6 hits around the clock. 

As for O2 - in some point I followed Batche's advice and tried hyperventilating with 25lpm. Later, I realized lower flow rates (10-12lpm) also work for me, as long as I'm lying in a certain way, breathing in a certain pace, leaving the oxygen in my lungs for a few seconds every time and clearing my mind. I know, it sounds like something Potter would make fun off...

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@ClusterSwarm, don't take it too personally. You don't know what other people went through, what they tried and how much snake oil they been fed over the years. It's only natural that people are touchy about the language used to describe their condition and treatment prospects. There's a huge difference between saying "it works" and "it works for me". I'm also new here, but I', a "Veteran" at clusterheadaches.com, and flaming of newbies with revelations is as old sport. Take care.

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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.

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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. 

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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. 

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