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Mar 15, 2015, 09:56 AM
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Member Since: Feb 2015
Location: Eastern US
Posts: 472
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Quote:
Originally Posted by la doctora
Yes it seems that they have already ruled out the sphincter of oddi disfunction with me.I fit the profile of a cyclic vomiter to a T. But keep those suggestions coming. I'll be happy to find out there is something that can be done about all of this.
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Weird question, but do you have any history of porphyrias? Have you ever been tested for acute intermittent porphyria? I have a family history of this, and it presents similarly, but usually with severe abdominal pain. Just curious. You may not have the correct ethnic background, I'm not sure, it almost always presents in northern Europeans.
Also, have you tried triptans as abortive therapy? What else have you tried for prophylaxis? Propranolol? Topirimate? Other anti-convulsants? Cyproheptadine?
I wanted to let you know I have a severe neurogenic pure autonomic failure so I feel you there. Can I ask, what meds are you taking for it? I'm on droxidopa, midodrine and florinef plus 3 X/wk saline infusions and it's still poorly controlled. I actually do have an eating disorder on top of it, so my vomiting is of my own volition 
Sorry you're having to deal with all of this.
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