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Posts posted by SmileyGal

  1. 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.  

  2. I live in MN also...I had my third syncope episode this weekend. Second one with significant injury. I have been with an Electrophysiologist for over 4 years and coping for the past 8 years. I was diagnosed with Inappropriate Sinus Tachicardia in 2015 and had a heart ablation because my heart rate went to 200 beats per minute. Any amount of adrenaline would cause my heart to race. It did not matter if it was walking a flight of stairs, crying, laughing or dreaming in my sleep. Since then, I have so many diagnosis’s that I have lost count. I think this last episode has scared me the most. I’m lucky I didn’t break my ribs when I fell onto the edge of my tub this weekend. I look forward to interacting with you as no one understands my struggles and it is a lonely place to be most days. I work full-time and that is my life most days. I use humor to make it through and also allow myself to cry when I necessary. I spend most evenings with my 6# Yorkie, named Smiley, my iPad for solitaire and reading or watching a movie. My life went from working out to rest so I can have enough energy to work. Coping strategies are the name of the game and acceptance for my limitations. My son is getting married in 2 months and I am limited in my physical ability to help with the planning - that breaks my heart. I spend lots of money on medical and am considering disability at this point for a better quality of life. It is a tough decision to make and one that would benefit my relationships because all I do is work and exist. I would be honored to share my experiences as I continue to document my journey and look to writing a blog, book, etc. All of us that suffer need a voice and I am willing to take a step out and tell my story to help bring awareness for others. 

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