Report Not Pots, Then What Is It? in Dysautonomia Discussion Posted April 2, 2019 On 3/23/2019 at 7:11 PM, JimL said: They are treating the symptoms and not the cause because that's how they are trained and either they don't know what causes it and they don't want to try to find out or they can't because they don't have the tools yet. Unless someone loses consciousness, they won't have a sense and urgency and depending on where you are, even then. I have had several syncope episodes with severe injuries and little warning. I am still struggling to get 1) a diagnosis & 2) help to make me safe when it happens. I was diagnosed with Inappropriate Sinus Tachycardia in 2014, a heart ablation in 2015, so many diagnoses’s since 2011, I have lost count. My fear and concern is the injuries I have suffered when I go down and the inability for us to find a solution for me. I take Midodrine, wear compression stockings, drink 64+ oz of water, add sodium and still have issues. I have implemented meditation, all natural diet, lots of fiber foods and only have enough energy to work. I am now considering disability as I had a syncope episode in October 2018 while working and not so fun. This past weekend was a scare when I fell in my bathroom with my right hip and ribs with deep bruising. I struggled to even breathe as I came to. I saw my GP today and she feels so helpless. I am doing more research and think my only option might be a permanent pacemaker to allow me more of a warning before I go down. I truly don’t want to injure myself anymore. I am disheartened that my autonomic nervous system is failing me so much. I see my EP that did my ablation in 2015 on Thursday. Let’s just say the staff knows me by name and appreciates my tenacity and ability to keep fighting. November 2017 I fell out of my shower due to a fluctuation of water temperature on my legs after a workout. My shower curtain caught me as I went down and a hit my jaw on the sink resulting in TMJ surgery and now Invisalign to help my bite re-align so I can chew my food correctly. I am so glad to have joined this group this evening because it helps me not feel alone in the battle of figuring out this awful syndrome we all suffer from to varying degrees. Losing consciousness does not necessarily get noticed and treated any different than when I first had issues in 2011. My symptoms are progressing and that is the most worrisome for me. Thank you for listening and sharing your stories. Again, it is refreshing to know I am not alone.