Looking for advice from anyone with dysautonomia - Non POTS type.
I'm a woman in my early 20s who's been dealing with dysautonomia for several years, and I'm feeling a bit stuck.
My original diagnosis was POTS with orthostatic hypotension, but over time my cardiologist's working diagnosis has changed to cardioinhibitory syncope.
I've tried several medications, but unfortunately my body doesn't tolerate them well. I had to stop both propranolol and midodrine after developing significant side effects, including episodes of extremely high blood pressure 220/140 (my cardiologist advised me to discontinue them). Right now I'm only taking a low dose of fludrocortisone.
One of the biggest challenges is that my vitals fluctuate a lot. I've had:
- Blood pressure as low as 60/40 and as high as around 180/110.
- Heart rate dropping into the low 30s and at other times going above 200 bpm.
I've already had a neurological workup, which was normal. My echocardiogram and a Holter monitor were also normal, although the monitor unfortunately didn't capture any of my significant bradycardia episodes. That testing was done a few years ago.
I also have hypermobility Spectrum Disorder.
Lately, the episodes where my heart rate drops have become one of the hardest parts to deal with. Sometimes it gets so low that even sitting upright or having a conversation feels exhausting. I become extremely short of breath, dizzy, and feel like I can barely function. I've also experienced convulsive syncope, which I've been told is related to reduced blood flow to the brain during these episodes.
At the moment, my heart rate is dropping into the low 30s at least once or twice most weeks, although the frequency varies.
I've requested a teleconsultation with my cardiologist, but in the meantime I'm feeling uncertain. My family generally only takes me to see a doctor or to the hospital if they believe it's a true emergency, so I often end up second-guessing myself. Part of me worries these episodes are more serious than I'm treating them, while another part keeps telling me that if it were truly dangerous, something would have happened already.
Has anyone experienced anything similar with cardioinhibitory syncope or dysautonomia? How did your doctors approach recurrent episodes of profound bradycardia? Were there any additional tests or treatments that ended up helping? I'd really appreciate hearing about other people's experiences while I wait to speak with my cardiologist.