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Has Anyone Ever Had This Experience?


LindaJoy
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Hi, all,

I'm home from Mayo, and while I'm not done with their testing (Dr. Butterfield wants me to induce an "episode" to see what mediators I'm putting out, to check for mast cell activity), I'm still searching for answers on my own. I would like to describe one type of my "episodes" to you, and see if any of you can relate or knows what the heck is going on with me!!!

I was feeling not too bad today until I ate this afternoon. I'm still doing the baby food thing, so I had some baby beef and some pears. I'm also drinking a hydration solution. After a few minutes, maybe twenty at most, my stomach started to knot (this has happened numerous times before, but I'll detail the latest episode here) and felt bloated, then that feeling went up my back and into my head, whereby my head, inside, felt inflamed, like my arteries were swollen. My ears began to hurt, as if my tubes were inflamed, as did my eyes. My eyes also began to feel dry, then my eyesight went a little blurry. After that settled down a bit, my head continued to hurt across the back near my neck, and my face began to feel hot, with some flushing starting in across my back. I was left with muscle pain, eye pain, ear pain and fullness, stomach bloating and burning, and pain across the back of my head. Wow, from baby beef and pears!

Have any of you ever done this?

Thanks for your replies, in advance.

Linda

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i have never had that rough of a time with eating. i am so sorry that has happened to you. i have been away for a few weeks but i wanted to let you know that i have thought about you everyday hoping that you were getting better. maybe they will find something for you and i truly hope that you are able to eat without all that pain from now on.

take care of yourself and i wish i could give you a hug. B)

dionna B)

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I'm not entirely sure I have exactly what you get because I have a real hard time describing my symptoms or knowing if I get those things until I actually have someone else explain it then pay attention the next time I get what is similar...if that's makes any sense. B)

But, for now, I do know that I get at least some of those symptoms when/after I eat. No matter how much or how little I eat. I'm going to assume you get fatigued as well after all this. That's what I notice the most of all my symptoms after eating. I get shortness of breath too, or like I can't take a deep breath.

As I said, though, I'll have to pay attention the next time I eat to see if I get any of the other things you've mentioned. I do know, however, which I'm sure others will agree, having pots and eating, blood goes to the abdomen during the digestion process and can cause many of these symptoms. Eating is probably the worst "regular" trigger I have for pots episodes, so my doctor tries to treat me with that in mind, which is why she put me of midodrine: to help stop the pooling of blood in the abdominal area

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Hi Linda,

I'm glad you're back from mayo, and that the doctors seem to be taking your very disturbing symptoms seriously. I've never had anything close to what you describe after eating. I occasionally get a bloated stomach, but not the pain or flushing.

Anyway, I hope you can start to get some answers as to what's happening with you. We can all relate to how terrifying your experience has been, but hopefully you can find a treatment that will allow you to bypass these scary episodes.

Hugs,

Lauren

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eating is just a nightmare for me, it triggers so many symptoms, i get terrible adrenaline rushes, get so so hyper, bp drops alot, then get terrible crushing pressure headaches even after just little bit of food. i can only so little and am starving most of the time, i take beta blockers which help to keep the heart palpitations under control, but thats about all they do, after this whole hyper adrenaline episode, and breathing so fast like i am running, then i am just so so exhausted afterwards, its just ****, well sorry i dont have any helpful ideas, but just wanted to say i can definately relate to the troubles of eating! hope your symptoms get better,

radha

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After I eat, I try to lay down for a little bit. I do better "grazing" but I don't have a buffet wating for me at any given moment! It might not be the "baby" food that triggered your episode but the combination with the beverages that we're encouraged to drink. I think any stomach expansion triggers many of my symptoms, after all, that fast occuring may be an autonomic reaction. Martha

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It's terrible when one of the greatest joys in life, eating, is taken away, isn't it?!

linda -

i'm not experiencing the same food issues that you are but the above line you wrote really rang true and hit me so very hard as i'm on TPN these days and unable to eat anything beyond a few popsicles and hard candy due to severe gastroparesis/dysmotility. so...while our issues are different, i can definitely relate to the struggle of not being able to eat. if it was the only thing going on i'd probably whine a bit and move on to bigger and better things but as my limitations have increased so in many ways the food issue is incredibly difficult. so...i just wanted to send a hug your way and tell you that in regard to the pleasures of food being taken away, i truly do "get it".

:) melissa

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Hi,

I never drink an hour before I eat, then I eat without drinking, then I wait at least an hour until I drink something again. It has seemed to help some. Plus I eat small meals, actually usually just peanut butter toast for breakfast and then a little supper. Sometimes I eat a protein bar in bites all day long. I could honestly give up eating and would never be hungry. I also avoid milk products-they really seem to make me bloat up.

Hang in there, I know it is so hard. The other thing they say is never eat protein and fruit together. Fruit should be eaten alone an hour before your meal. Something about fermentation. My GI doc told me that.

Dawn

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