Finally Got a Diagnosis for My Long List of Symptoms

This week, for the first time in my life, I had a doctor look at ALL my symptoms and realize they were almost all connected. I have had swelling issues, cardiac arrhythmia, tachycardia, issues swallowing, fatigue, headaches, the list is long and tedious. But my cardiologist looked at all of it and said to me "Huh, has anyone ever told you it's not your heart that's the problem?". I was incredulous as I've always been told I just shouldn't drink caffeine and try to lose weight. She went on to say that all of the issues I have are regulation issues (other than the hypermobility) and that I actually have dysautonomia. The treatments for the symptoms are the same, but to realize that, at 22 years old I don't actually have multiple different issues, but one overarching disorder is somewhat relieving.

Your answer

Zoey_Val

1y ago

So glad you finally got a diagnosis! My cardio diagnosed me with dysautonomia after my PCP referred me based on my symptoms I did a 48 hr heart monitor and had frequent fainting spells in the past and finally was able to get a diagnosis. I remember that relief as well and I hope you can do everything you can to manage the symptoms as it can be extremely frustrating at times. I have similar symptoms as well and the thing that has helped me the most is managing stress as well as using ice packs all the time (on my wrists and back of neck) - I can vouch that the heat makes my symptoms worse for sure

CK77

1y ago

You may want to look into cardiac dysautonomia and heart rate variability. I have vasovagal syncope issues as well that are worse when I go from cool to extremely hot temperatures. My cardiologist said the extreme heat in the summer would make it worse and he was correct. I get the drop in blood pressure and heart rate frequently these days.

stajoy

1y ago

Has anyone had strokes with Dysautonomia? I've had a heart attack and three stokes this year. The cardiologist just doesn't listen to me.and won't answer questions. I was diagnosed with Dysautonomia, pts, and RSD by my old doctors in a different state. My doctor that was treating me up and left during covid. Does Dysautonomia cause afib. EP doctor believes the afib isn't from the heart disease but Vasco syncope is that part of the Dysautonomia?

Lunarr

1y ago

Dysautonomia is horribly overlooked and regularly diagnosed as other things. Glad you got some answers!! It's always nice to finally have that sense of "I know what's going on"

not_b00bs

1y ago

welcome to the club! dysautonomia is relatively common, but severely underresearched or known about. i finally got my diagnosis a few weeks ago, and i'm still learning about it. feel free to reach out to me! <3

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