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Others Without Pots?


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This is a great site and gives me some good info. However I dont have POTS. I was diagnosed with pure autonomic failure. Are there other members who arent Potsies nut still have some kind of dysautunomia? If so, what are your symptoms, issues, concerns? I am dizzy and nauseated most of the time though tests showed i do not have gastroporosis. Eating is a big problem and the dizziness means i rarely leave the house.I live alone since my kids are all grown up. Needless to say i am grateful for your insight and support whatever your diagnosis. Best regards--Caroline aka adamandbensmom

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Hi Caroline,

This is indeed a great site. I don't have POTS either, I have orthostatic hypotension, dx'd by TTT. I had trouble with nausea and weight loss before I started on doxepin. I have never been tested for gastroparesis, but who knows, I may have it as well. I do get lightheaded and it is so much worse right now since the weather got warm.

I have learned SO much on this site, I hope you do too. Welcome!

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Hi Caroline. I have pure autonomic failure also. I got my gastroparesis diagnosis last August & just recently was diagnosed with fibromyalgia. I'm a fainter, too. Before I progressed, I had a diagnosis of NCS & orthostatic intolerance. I've never been diagnosed with POTS either.

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Hi Caroline,

I was diagnosised with Orthostatic Hypotenstion Dysautonomia (Autonomic Neuropathy) not POTs yet, but am suspect. I do have Gastroparesis and this is the best place to learn so much and also a very loving family. Welcome and when I have more time I will share my symptoms, etc...A great big Hug to you.:)

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I have POTS but also have many other autonomic conditions. I am a rare bird! Mine at times are so bad that I have been home bound for months or in the hospital for 2-3 wks at a time.

I have Neurocardiogenic syncope, swallow syncope/deglutition (there are only 10-30 people in the US who have this one), exaggerated sympathetic vasoconstrictor and vasopressor responses (as dx by Vanderbilt autonomic clinic) mitral valve prolapse (which has been almost non existent for me the last 3 yrs), sluggish colon, convulsive like muscle spasms, kidney/ bladder flushing (now controlled by 4-6 grams salt tabs a day), pre menopause, slurred or absent speech during flare ups.....

I know when I was hunting for support this was one of the first sites that I came to. It was good but at the time my symptoms were so severe that I felt a bit out of place. Now that I have more accurate dxs and more understanding of what is going on in my body it is easier for me to cope with.

So I know how you feel, even though I also have POTS. POTS is one of my lesser conditions and causes less symptoms than other things.

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