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Hello @amialonehere24,
I'd like to invite @megan1853 to this conversation as they also mentioned being diagnosed with takotsubo cardiomyopathy as well.
@megan1853 started the conversation:
"Takotsubo cardiomyopathy--working out???"
- https://connect.mayoclinic.org/discussion/takotsubo-cardiomyopathy-working-out/
@fergie01 also joined the conversation of their journey years ago with takotsubo cardiomyopathy.
Here are a few references that may be useful to better understand takotsubo:
"Broken heart syndrome"
- https://www.mayoclinic.org/diseases-conditions/broken-heart-syndrome/symptoms-causes/syc-20354617
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"Scientists discover possible explanation for mysterious Takotsubo syndrome"
- https://www.bhf.org.uk/what-we-do/news-from-the-bhf/news-archive/2021/june/scientists-discover-possible-explanation-for-mysterious-takotsubo-syndrome
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"Takotsubo cardiomyopathy: A comprehensive review"
- https://pmc.ncbi.nlm.nih.gov/articles/PMC9258224/
@amialonehere24 - Have you been offered a deeper explanation into what may be leading to your continued takotsubo cardiomyopathy? How are you doing with symptoms or your day-to-day life?
Replies to "Hello @amialonehere24, I'd like to invite @megan1853 to this conversation as they also mentioned being diagnosed..."
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Hello and million apologies if this question is out of place. I am over two years into being diagnosed with metastatic Paraganglioma caused by a double SDHB mutation. Turned out to be aortal and vagal. Long story short, my first annual follow up found Pheochromocytoma in my adrenal gland. Very high hormone secretions. About every couple of weeks my blood pressure goes up into two hundreds plus. 225 over 100 few weeks ago, 187 over 110 last week. It comes down after an a an hour or so.
From reading here and other places Takotsubo may partially be caused by adrenaline, norepinephrine, and other "fight or flight" hormones. Every Pheochromocytoma person I have talked to have abnormally high hormone discharge episodes from the secreting tumors. My Paraganglioma was active which I was told was not common.
I was hoping to find out if anybody here has been diagnosed with Neuroendocrine cancers like me?
Many thanks in advance. Apologies for the long post. People talking to other people is the biggest help, in my humble opinion.