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ClusterSwarm

This helped me- hopefully will help others

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Opiates is not outside the box, it’s outside of standards of Pratice. Any decent headache specialist should know that or neuro or any doctor that takes the time to look up how to help their pt w a rare condition. 

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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. 

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 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.”
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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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On 7/16/2019 at 8:30 PM, ClusterSwarm said:

 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.”
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Please source. Thanks.

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On 7/18/2019 at 5:29 PM, ClusterSwarm said:

a guy named eagle on cluster headaches.com 

Thanks, we like 1st hand reports.

On 7/18/2019 at 5:30 PM, ClusterSwarm said:

This is working for a bunch of people 

Great! Got any statistics for us? Research?

Edit: I hit 'back to top'. That is an eye opening thread!! I wonder what it was 'last time'.

Edited by Brain on fire
Read the thread

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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. 

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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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You are a rare individual @Freud

Although, it has to be said - coffee is probably much more effective if you don't drink it very often. For it's too hypothetical of course...

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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....

Edited by Freud

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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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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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