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john2000

Why do I have food triggered CH when in cycle?

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Hi, I was wondering if anybody is experiencing a food triggered CH when in cycle?

 

When off cycle I can eat just about anything.

 

When my cycle starts the CH usually comes right after eating anything or a snack.

 

this happens about 50% of the time ,right after eating food.

 

It is weird that CH waits until I finish my meal too.

 

If it takes 10min to finish my dinner, then It starts 20s after finishing my meal.

 

When I snack , it happens 20s after finishing , Some yogurt, banana , anything.

 

Is it just coincidence?

 

thanks

 

 

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john,

I've never read about such an instantaneous reaction to just eating.  I'll be interested to see what others have to say.  There were quite a few foods listed in the triggers document we put together and the subsequent thread, but the ones you mention aren't there, and it seems hard to imagine that every meal or snack would have a trigger food, unless you are sprinkling everything you eat with something that has MSG in it.

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john', as you suggest in your other post, I think what your doctor was really saying was along the lines of "It wasn't in my textbooks, and I don't really want to think more about it, so let's call it coincidence."  So I hope you'll keep paying attention (as I'm sure you will),  because a pattern just might show up. 

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John,

 

Your timing of snacks / meals and CH attacks aren't much different than mine.  My triggers are very quick and can be quite severe.  Please look at the triggers list (food particularly) under the "Files" section.  There's a TON of them, and I'd bet you're hitting a trigger at meals / snacks.  

 

As an example, I can eat A chocolate Candy bar and get a BAD attack as early as a few minutes after finishing one.  BBQ sauce, and I get hit about half way through my meal.

 

If you can identify your triggers, you should be able to significantly reduce your attacks.  I easily cut out 90% of mine, by sticking (it's TOUGH), to a no trigger diet.

 

Hope this helps. 

J

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I think the same question can be extended to why is alcohol a trigger in cycle and not out of cycle.  In fact why are in cycle triggers not triggers out of cycle.  It speaks to our lack of understanding what is actually going on.  Somewhere deep inside our neurophysiology something short circuits or gets out of whack.  Whether this occurs due to an anatomic aberration, neurophysiologic hiccup or genetically passed on screwed up programming is yet to be determined.  This is especially true for episodics who generally follow a predictable pattern.  Something in the hypothalamus or nerve and vascular plexuses leading to it become susceptible to the trigger.  Folks would likely still get clusters without the trigger but probably not as frequently.  There are a lot of different factors that can contribute to the clusters it will be interesting to see if in our lifetimes a single mechanism of action is proven.  The great work folks on this board do with presenting case studies of what works and what doesnt, reporting reliable triggers and treatments will provide fuel for researchers who can test hypotheses' and get a consensus on WTF is going on in our heads. 

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John, Pebbles,

 

You raise an interesting point.   I've realized over the last few months, that ALL of my CH triggers I've known about for years.  Those have apparently been causing subtle but very present negative impact to my life when I'm not in cycle.  I've started realizing most (if not all) of the aches, pains, irritations, stomach issues etc etc etc.  Even though they are mild, that I've had off an on my entire life all seem to be related to one food or another.  

 

The one (or could be two), commonalities of all my food triggers is they all contain yeast and/or tyramines (alcohol, chocolate, yogurt, fermented cheese, bbq sauce, preserved meats etc etc).  I found by chance a few months ago that if I went a few days of not eating anything with yeast or tyramines in it, that ALL of my body symptoms would go away..  (ALL).  I've been experimenting with different foods for a few months now, and everything I'm finding comes back to one or both of those things present in foods I eat.  An hour to 12 hours later I get pain, irritation or something bad with my body...  Quite interesting, and I'd speculate that we all have similar allergies, but are only VERY mild when not in cycle.

 

J

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Not sure its an allergy but a sensitivity.  I know it sounds like splitting hairs but the word allergy gets overused and people sometimes put themselves in a bad spot calling adverse reactions an allergy.  I do agree there is a metabolic issue in CH that has yet to be identified.  Kinda like celiac disease of the brain.

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Uh, cool topic

2016 I lost nearly my whole stoach. They where able to rebuild a type of stomach it now has the size of cup of tea about 300-350ml. Pilori, the muscle after stomach removed. Vagnus nerve all cut.

So I had to change eating habits dramatically. Cluster changed for sure to the positive. Allready wanted to cry out, folks the source off our problem may be in the stomach, its function and environment...

But until now, for now, I can´t confirm and pinpoint it down. Anti-inflammatory regime helps a lot. Because my metabolsim fucked up since years, I is far to early for me beeing able to point to one direction.

But stomache, anti-inflammatory are two keys for me.

I´m smoker, 20/day. My guess too: smoking creates permanent inflamation in my lungs...

This brown shit I´m spiting I do not belive this beeing only nicotin as in hospital (4x emergency room, 3 surgeries) I smoked nearly the same amount (privat room&balcony, closer to heaven then earth they let me do so...) But received a lot of antibiotics spit turned clear like glas. Now becoming slowly again colored, triggers start hiting again and I have to take care not to strike them.

Yes, I will stop smoking permanently. Far to early, far away for a clear statement.

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Good luck with the smoking cessation.  It is the second hardest thing you will ever do.  I trust you are getting your B12 levels checked and supplemented.  People with stomach resections are at very high risk of a B12 deficiency and often need supplements (a shot)  Other micronutrients often need replacing as well.

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I know but it seems not to be a real problem in daily live as I read humans have a big amount of B12 all the time in the body. My body does not anymore produce/metabolize B12, so yes I know I have to take every year a shot of B12 iv.

For the moment iron is important, level far to low. Twice a week a multivitamine. Periodically hemogram yes.

As im out of the rat race going slowly into a kind of retierement It may be easyier getting of smoking. In total I was 7 weeks in hospital, nurses where extremly kind and helping. Never seen something like this..

What nocked me down too was when suddenly talking to a nurse at nigth time, he explaining me: Urs, the outer most horrible death we know are lung deseas like lung cancer, COPD and so on. The suffering without changes to recover also hits us verry hard...

exactly like drawning without water. Slowly but surely.

I'm mentally strong. My father did it at the age of 45 and I can do the same, I know it will be hard but I ,m really motivated.

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And again it seems that having a good view on our disease will probably help us finding the way out, so please people, start registering your journey and mayby in a while we recognise patterns, a bit later the combination between food, triggers and attacks, who knows.

 

The Big difference between A forum and Registrations:

A forum is a place were we exchange our experience. A thing that, in my experience, is influenced a lot by time and things that happen. Registrations are clear points in time, no emotion involved and made when occurring. They can be viewed and compared where experiences can not. 
An Forum gives a story about how and what somebody is doing, all joined in one text. You need to read, remember and place it in order (in your head) A registration is clear, one thing at a time, all items separated and displayed on a timeline.

 

The app has a lot of function already, but not enought. End of the month I will go to the Netherlands to the eHealth week to get info, contacts and hopefully a way to funding. I'm making contact with datakind.org aswell. They are a non-profit organization all about analysing medical data that people can send in. Don't know yet what it will bring but if they are positive, I'll make an option so you can send your data voluntarily to the to use for analysis.

 

Please register your journey, its not for me, its for us.

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when you eat, blood must go to the belly. Less blood flow, less O2 in system = trigger. 

 

When you smell perfume, it is causing your nose to close up a bit. Less O2.

 

When you drink champagne, the sugar go straight to your brain, causing less O2 to reach it. Champagne is the fastest alcohol to go to the brain, way faster than beer or wine. It goes immediately. This rush is causing your brain to get less O2 = trigger.

 

Too much exercise = O2 if my receptors aren't blocked.

 

Capers do it for me. About 20 minutes later.

 

I think cluster people have blood issues that cause us to not have enough O2 in system. I will write in separate post.

 

We all different. I have gout and I think it is related to clusters and blood flow. Shrimp give me gout bad. Alcohol, not at all. Low pressure outside, gout come up with too much soda. High pressure, I can drink soda all I want.

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Does anyone have information on how long after you eat something you can rule it out as a trigger? Are my breakfast foods potential triggers for my afternoon cluster attacks or should I just be looking at my most recent meals?

My neurologist told me I'd just drive myself crazy trying to figure this out and to just avoid alcohol. 

Any info is appreciated!

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