p8d Posted May 26, 2015 Report Share Posted May 26, 2015 Hi,I was diagnosed with POTS/dysatonomia/small fiber neuropathy/ ortho static hypotension in March by a ANS specialist. Loads of tests, failed tilt Table, etc. Every med they have tried for hypotension (Mestinon, mIdodrine) have given me diarrhea. Went off all ortho static drugs a month ago, developed gastroparesis (GI Dr familiar with Ans dysfunction). Started gastroparesis diet resulted in SEvere pain every time I ate. Lost 17 pounds in 4 weeks, weighed 84 pounds last week, hospitalized for 4 days, started TPN at night, doing it at home now with full liquid diet. Started Gabepentin for presumed stomach Neuropathy (some heart TWave abnormality precludes amitriptyline). Sometimes liquid diet doesn't cause pain, sometimes it does). ANS Dr wants to start low dose fludricortisone for BP swings. Anyone have GI issues with this? Any advice on diet/meds? I feel like I could handle the other stuff if I could eat without pain. Am doing exercise protocol but this has set me back to the beginning I've gotten so weak. Thank you any advice/support/hope would be gratefully appreciated.P8d Quote Link to comment Share on other sites More sharing options...
angelloz Posted May 26, 2015 Report Share Posted May 26, 2015 I have had digestion/ weight loss problems as well but not to that degree. I was down to 94 pounds and have fought my way back to 100. The diarrhea sort of resolved itself after many months...oh I did go gluten free! Trust your doctors, hopefully they will find what works for you. I would think they would concentrate more on the weight loss than the hypotension but I am no doctor . I do know that for me gaining some weight back helped a bit with other things like blood pressure, not all of the time but overall. Hang in there! there is nothing easy about this illness but you have the support of the folks on the forum! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted May 26, 2015 Report Share Posted May 26, 2015 So sorry you are having such a difficult time right now. Many patients here have both GI and cardiovascular symptoms. I agree w angelloz that from what I understand being underweight can exacerbate hypotension -- I believe bc blood volume is down. Exercise also of course helps build blood volume. It sounds like you have a good team of doctors working on this with you. Hope you can soon find foods that don't upset your system and you can gain back your weight. Quote Link to comment Share on other sites More sharing options...
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