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Scott

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About Scott

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  1. Hi, first time poster here. Background: I had pots symptoms starting around 6 months back which started with severe diarrhea that came mostly with near syncopal episodes, not being able to get enough air, tingling and numbness in my extremities and face (especially the lips), tachycardia, blood pressure irregularities. Interestingly most of this was triggered by eating. At some point about a month in I got the first fever I've ever had in my adult life and everything kind of stopped, no more diarrhea, severe constipation instead, and difficulty breathing after eating. I eventually got diagnosed at the mayo clinic after autonomic testing. For whatever reason diazepam helps with my symptoms. I eventually went on a low fodmap diet which helped with the postprandial dyspnea, and my pots was almost entirely under control after that. When it wasn't I would take tudca from time to time and that also provides relief, although when I stop it I tend to have a full relapse with really bad tachycardia and I typically end up in the hospital. Sadly my symptoms seem to be coming back after something like 2 - 3 months of minimal symptoms (probably related to starting vitamin d? this is the only thing that changed). Anyway, my question is in the title. I live alone, and far away from any family. In the beginning my ex-girlfriend came to stay with me because I had no idea what was going on and no-one to help me, but she was reluctant to do so. My family all have jobs and lives and can't really drop them to come live with me in a studio apartment. I can't go live with them because I have a job that I'm probably going to lose because of this condition. They live in the middle of nowhere with no access to any decent healthcare. At least where I live now there are neurologists who specialize in dysautonomia. It's terrifying being alone and having your heart rate skyrocket while your hands and feet go numb, wondering if this is going to be it. They treat me terribly at the ER, I go proactively, sometimes I sit in the waiting room with the hope that if something does go wrong, at least someone is around to make sure I'm ok. I've overheard nurses make rude remarks like "oh great, we have to babysit this guy again...". I'm at least lucky enough to live in a building with a doorman, so I'll sometimes hang out with them and tell them I have a medical condition and to call an ambulance if something happens to me. Other that I live in terror of something happening to me while I'm in my apartment where no one would find me for days. Does anyone else have any coping techniques for living alone with POTS?
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