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CBLady

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Reply with quote  #1 
Hi everyone! I'm 25 and after two grueling years I've been diagnosed with CVS - only I don't really vomit all too often. In fact, I've had maybe three episodes of vomiting since I started this process, and all had other things as catalysts (i.e. alcohol, traveling, etc.)

My disorder is marked by several weeks of extreme nausea, inappetence, and terrible upper back and abdominal pain that doesn't abate no matter what I try. I was initially diagnosed with gall stones after a trip to the ER where I could barely breathe, I was in so much pain. My gall bladder was removed, and yet nothing got better. I've had MRIs, gastric emptying studies, the works, all normal. Eventually my (second) GI came to this conclusion and referred me to someone more specialized. 

I guess I'm just a little confused by my diagnosis, as everyone here seems to a) have vomiting always associated with their episodes and b) only have their episodes last a couple of days. My average for the year is ~3 weeks with an episode and then ~4 weeks off. I've lost about 20 pounds since March of this year. 

It should be noted that I DO have migraines and that when I do end up vomiting, I just can't stop unless I have IV thorazine or zofran. But the pain and the terrible nausea to the point where I can't eat for days is getting out of hand. 

My new doctor just put me on a low dose of Mirtazapine, L-Carnitine, and Co-Q 10. Fingers crossed it will work (the Amitriptyline did not work out in the slightest). 

Have you guys ever heard of cases like this before?
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Eric

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Reply with quote  #2 
My son has CVS but also has Functional Abdominal Pain Syndrome. The FAPS can cause intense unrelenting abdominal pain for weeks at a time with nausea but no vomiting. He has had episodes last over a month. Has your doc mentioned that at all?
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wynnak

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Reply with quote  #3 
The severity of episodes can vary a lot. I have talked with people that will be sick for a few short hours. My son has gone weeks. His initial was two weeks sick, two weeks fine.
Has your doctor talked about abdominal migraines?

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Blynda
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CBLady

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Reply with quote  #4 
My doctor didn't mention either of those! I'll be sure to bring them up at my next appointment is a few weeks.

Right now it's a constant struggle of "I don't want to lose more weight" and eating and then being in terrible pain versus not eating and being in mild pain. Ugh such a hassle.
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wynnak

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Reply with quote  #5 
My son went through that too. When his episodes started lasting longer than 2 weeks, the struggle to eat and keep on weight was super hard. Not wanting to eat because he was afraid to throw up.
Maybe if you have online access to the doctor you have an upcoming appt with, contact them that way. They may agree to change things, or get you in earlier to discuss it.
I learned that sitting and weighting was not to the benefit of my kids health. I know it’s harder as an adult. We tend to not push as hard..
Let the doctor know that you aren’t looking for pain meds, it is literally just something to help cope with the pain. Some people find the hot bathes help. Capscasin cream rub on the abdomen can help in the same way. It interrupts pain receptors going to the brain. My son is heat I tolerant. So we have to try other things.
Let us know how it goes.

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Blynda
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