Autonomic Dysfunction - cardiac symptoms. Anyone else?

Hello all. So I have been under investigation with a cardiology team for quite a few months now for exercise and movement induced palpitations, high heart rate, loss of vision and dizziness along with various other unpleasant symptoms. I had the standard 24 hour and 72 hour ECG and they picked up sinus tachycardia and nothing else. I had an echo which showed a very mild regurgitation but nothing to be alarmed about. I took myself to a private hospital yesterday and spoke to a cardiologist there who told me that my symptoms fit very well into Autonomic Dysfunction. He told me he was nothing to be concerned about and that there are no ways to manage it, but on doing my own research when I came home I read that it can indeed be something to be concerned about. It can cause sudden cardiac death and arrhythmias? He also told me that a pacemaker would not help control my symptoms but there are numerous things that I have read which say otherwise? I was just wondering if anyone else has AD or been told they might have AD and what are your experiences or thoughts? I have an Exercise Tolerance Test on Thursday also so hopefully that will provide more answers.

[Helly75]

Hi, I almost choked when I read your post!! I was diagnosed this year with autonomic small fiber neuropathy, multiple strange symptoms for years including funny heart rhythm & a sharp rate rise when going from laying down to standing up (complicated by myocarditis) I was diagnosed by a neurologist, not a cardiologist. It can cause multi system issues but progression is thought to be slow. An underlying cause needs to be looked for but in my case nothing has been found yet ,I hope you get the answers you need 🙂

[Mikamoo2]

Hi both wow you are both describing me! I had myocarditis a few years ago never felt 100% 'normal' since. Anyway skip to just over 2 years ago at work a funny feeling came over me & I dropped to the floor like a puppet that had their strings cut. Gp did not seem concerned thought it was a typical faint though I didn't lose consciousness. Finally I was given a cardiology app after this happened numerous times & during ecg it happened again they discovered my heart rate spiked. After more tests tilt table stress test etc referred to neurology (still waiting) I'm on bisoprolol now which helps a bit but recently the opposite happened & my heart rate dropped after an overnight stay in hospital I was diagnosed with autonomic dysfunction. A follow up telephone call by another cardiologist said he doesn't think that & I will get another appointment in a few months time. So still left high & dry. I feel nobody is taking this seriously its such a debilitating thing to live with x

[Hidden in reply to Mikamoo2]

Sounds exactly like me. My heart rate goes high and then low but when it goes low I lose my vision. I’m not 100% sure that it is autonomic dysfunction. Really hoping my stress test shows more because if it doesn’t I’m concerned about what the next step will be

[dorito26]

hello! it’s worth looking into postural orthostatic tachycardia syndrome

you sound similar to me and that’s what i’m being referred to cardiology and neurology for

[Hidden in reply to dorito26]

Yeah I was thinking that’s what it could be. The only test for that is the tilt table test though isn’t it? I’ll have to convince my cardiologist to do that one since I had to practically list reasons why an exercise test should be done 🙄

[dorito26 in reply to Hidden]

yeah i think it’s only tilt, heart rate and blood pressure unfortunately.

PoTS UK have a fantastic website and they helped me! it took me 7 months of going to doctors to get someone to actually listen to me. i went armed with all of my symptoms, some heart rate data, the PoTS GP guide and an email from PoTS UK and i was finally listened to.

you know yourself better than anyone, i’d you know something is wrong then be firm and keep pushing. wishing you all the best

[Mikamoo2]

Fingers crossed you get sorted keep us posted! If I get any further will let you know. Good luck x

[Milkfairy Heart Star]

You might find some further information on the Pots website

potsuk.org/

Also see this specialist unit at Queens Square, London

uclh.nhs.uk/our-services/fi...