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wynnak

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Reply with quote  #1 
Trying to get some conversations going here.. 

I have been hearing people, that are just diagnosed, saying that the doctors tell them it is their stress levels affecting their CVS. 

Do you know your Triggers? Have you noticed your own? 

Let's talk triggers! 

My son never had stress until the doctors kept telling him not to stress. He has triggers like Motion sickness, migraines, viruses, seasonal allergies etc. Plenty of others that we mitigate to help keep him from triggering.

What are some of the triggers that you know of and how do you try to preempt them?

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Blynda
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Ahmelcher

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Reply with quote  #2 
My episodes are now approximately 7 weeks apart. They used to be weekly. I’ve identified at least two main triggers: gluten and beef, and now possibly a third in cocoa. I had an episode yesterday (in the 7th week since my last), and it was not as severe as my first ones were. I had taken a zofran at the first sign of symptoms and while it didn’t stop everything, I believe it helped. I also used phenergan as soon as I could, and that knocked me out. I’m feeling a bit groggy this morning. Since I’ve been avoiding food triggers, I’m thinking stress may have contributed to this, although part of my stress was the anticipation of having an episode! I have stress most of the time, so why an episode now? And it was at a really inconvenient time...prior to something I really needed and wanted to do!
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wynnak

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Reply with quote  #3 
That would be the "happy" stress. One type of stress that people usually don't include.

Have you evaluated dairy as a trigger? We have had a lot of people mention Dairy. My son does not have a dairy issue, but he starts avoiding it when we know he will become episodic. Usually one thing that tips us off that we could have issues. He will eat cookies but refuse the milk. He says it sounds bad. We have worked with him for years to get him to recognize things like that. He also tends to refuse sugar and eat more salt.. what we refer to as the nausea effect. Eats the salt to help with the slight nausea that his body recognizes that he might not. 

Thanks for sharing!

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Blynda
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Ahmelcher

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Reply with quote  #4 
Yes, dairy is on my list, I drink only almond milk now. I don’t have a problem with cheese, though. Interesting about the salt...when I was pregnant and had morning sickness, I’d reach for a salt shaker to be able to put a little on the tip of my tongue to help with nausea.
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Linda

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Reply with quote  #5 
I haven't pin pointed anything for sure.  Stress could be a factor for me.  In March 2015 I had a very bad case of C-diff.  I was in hospital for 11 days and worried about work and home.  In April I started with CVS attacks.  My best friend was dealing with cancer, and I also was dealing with my Mother who was in last stages of COPD.  My friend died in May, my Mother in June.  July I had a family reunion at my home for 85 people.  So those months I was under tremendous stress.  Aug and Sept and Oct seemed normal, but I still had attacks.  But when I think about it, I was trying to get my mother's house ready for selling and dealing with a house full of her things.  I was sick for Thanksgiving and Christmas.  Maybe stress is my trigger?!!  I'll have to sit down someday and see if I can point to other stress factors for the remaining time to Jan 2017 when the meds I started stopped my attacks.
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abigaillinda

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Reply with quote  #6 


My daughter has identified four areas she must diligently monitor:
sleep
eating
meds and supplements
hydration

She can let one of these areas slide a little before she starts feeling the nausea.  If two slide, she's in a vomiting episode.  

If it is near her menstrual cycle, she can't let any slide or she's in a vomiting episode.

If she has a cold (which takes her at least a month to recover from), she can't let any of these four areas slide.

As far as eating, she must snacks between small meals (she can let this one slide a little if there's no cold/allergy/sinus issue or she's not near the start of her menstrual cycle).

Thanks for keeping the topic ideas coming, Blynda.
Linda
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abigaillinda

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Reply with quote  #7 
Salt.  That's interesting.

My daughter's functional doc recommended that my daughter use Himalayan sea salt in a cup of water.  She should add as much salt as needed, meaning that she adds a little and tastes the water.  If she cannot taste the salt, she adds a little more.  She keeps adding salt until she can taste it in the water (just a little taste).  Then she drinks that cup of water.  

Some days my daughter tastes the salt right away.  Other times, she adds up to 1/2 tsp of salt before she tastes it and drinks it.  

It's part of how she hydrates.

Hmmm......
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Peacelj65

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Reply with quote  #8 
My daughter (age 25) has cvs. Her trigger is almost always her period. And if a stressful situation is around that time then boom. Full vomiting episode. And hospitalization. She takes amatriptaline for maintenance and klonopin for acute panic attacks. Which can trigger the cvs as well. Diet wise she eats super healthy. Organic. Non gmo. No red meat.
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Layla

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Reply with quote  #9 
Mine is mostly always my periods..but stress excitment tiredness alcohol eating late at night and and bugs I get and it's hospital and drip and rest...
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Ahmelcher

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Reply with quote  #10 
After going through rigorous food allergy testing , I thought I’d cracked the code...my episodes were
getting further apart (7 weeks) and less severe. And then, boom! I had a wicked episode a couple of days ago that completely emptied me and forced me to go to the ER for an IV and a dose of Phenergan. It was like I was back to square one. I’ve eliminated beef, gluten and most dairy. The one different thing I consumed was a cup of hot cocoa from my Keurig, so I am thinking that chocolate may have been the culprit. Really frustrating.
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ginny

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Reply with quote  #11 
Is there dairy in the cocoa?  I have Swiss Miss K cups of cocoa and mine do have dairy.  Hopefully it is the dairy and you can keep working toward milder further spaced episodes.

Try a food diary and then you can search for hidden ingredients.  Might help.

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Ahmelcher

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Reply with quote  #12 
I keep a food diary and have really whittled down what I can eat. Not all dairy bothers me; it might be the chocolate or some chemical that was in the K Cup. Needless to say, I’m not having that drink again. For now, I’m taking Zofran prophylactically at night and then in the morning. I’m still coming out of the Phenergan fog but it’s better than the alternative.
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Ahmelcher

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Reply with quote  #13 
Has anyone successfully petitioned for disability benefits with CVS?
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Shellly

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Reply with quote  #14 
They have a petition going on a English site for disability benefits.
I have signed it , it would be great if this was a disability as then I might get paid for the amount of time I have off work .

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ginny

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Reply with quote  #15 
Please try a search for information on others who have succeeded in getting disability benefits for CVS.  Kate Connor and Smoke are two who come to mind.  Kate posted a step by step outline of how she went about the disability designation.


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ginny CVSA Moderator
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