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Goldstec

Share your story in the next newsletter

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Hello all! 

We are looking for someone who would like to share her experiences with Dysautonomia in our next newsletter. Particularly, we would like to interview an individual who is currently going through (or just went through) the process of getting diagnosed with Dysautonomia. You do not have to be formally diagnosed to be featured in this article. We hope to share your story in an effort to connect our readers through shared experience. 

The process is simple, and will only take about 30 minutes of your time. Please respond below if interested and share a very quick summary (1-2 sentences) of your experience with Dysautonomia/your current stage in the diagnostic process.

Thank you! 

Chelsea Goldstein

Meet the Member Columnist 

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Diagnosed 9 months, been through a lot of testing, seeing specialist, allergies to most meds I've tried, still trying to find a medication, trying to keep my full time job,mother of a ten year old boy, from Australia, hospitalised on average every 4-5 weeks.

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diagnosed with hyperPOTS and NCS at age 42 - now 51. Disabled RN ( due to POTS ). Took 2 years and 5 cardiologists to get diagnosis, mostly due to my own research leading me to self-diagnosing POTS. Today somewhat stabilized but still need ongoing treatment changes due to changing symptoms. Mother and sister also have POTS, other sister and 2 nieces have symptoms of POTS but not yet diagnosed. 

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Had an undiagnosed episode about 6 years ago, then had another episode in November and passed out at work.  Informally diagnosed in the hospital and sent to Cardiologist for eval and treatment, now getting ready to see an EP and do more testing.  I work part-time as an RN, homeschool 3 young kids, and live on 40 acres with my husband and kids.  Have done much research on my own.

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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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