Does anyone know a cardiologist in Australia who understand dysautonomia and how its link to heart failure please ?

[Jas]

Hello everyone,

I'm new to the group, so pleased to find this group. I'm 57 year old; my ejection fraction is dropping a bit, I suspect dysautonomia.. I have Sjogren's Disease.  My neurologist, cardiologist and rheumatologist all saying dysautonomia is not their area.

I'm not getting anywhere.. after so much searching .. need to find a cardiologist who understands how dysautonomia can contribute or cause heart failure !! 

Many thanks in advance

Jas ..

[Sushi]

I don’t have any contacts in Australia though I do have cardiac conditions that are related to Dysautonomia—I had atrial fibrillation which has been successfully treated 🤞🏼, though were it left untreated, it could lead down the path to heart failure. I also have EDS (something that can go together with Dysautonomia) and that can predispose you to leaky valves—I had to have my mitral valve repaired). It may not be easy to find a cardiologist who is willing to put Dysautonomia into the equation, though there are some out there who do.  As far as ejection fraction, it is not a hard and fast number, but rather an estimation that will vary between doctors. Good luck with this!

[Pistol]

12 hours ago, Jas said:

12 hours ago, Jas said:

need to find a cardiologist who understands how dysautonomia can contribute or cause heart failure !!

my ejection fraction is dropping a bit, I suspect dysautonomia.

Dear @Jas - as far as I know there is not yet a known connection between heart failure and dysautonomia. The two conditions are usually diagnosed by different testing - dysautonomia tested by HR and BP readings as well as accompanying symptoms, and heart failure often gets diagnosed by determining the actual heart function - with ECG, Echocardiogram, measuring the actual output of the heart ( EF ) etc. One is caused by a poor heart muscle and the other is caused by a malfunction of communication between brain, nerves and cardio-vascular system. 

It may be a good idea to see a cardiologist who can determine if you have heart failure - if you do it would be rare to be caused by dysautonomia. 

[Jas]

Hello Pistol,

Thanks very much for your reply.

Just wondering would autonomic neuropathy cause heart failure ? are autonomic neuropathy and dysautonomia the same thing ?

Thanks  a lot in advance

Jas

[Jas]

Hello Sushi,

Thanks very much for your reply and the information provided. That's right ejection fraction changes I noticed from test to test.

I wonder, is there a doctor who contributes to this blog ?!

Cheers

Jas

[Sarah Tee]

@Jas, have you tried asking in the two Australian Facebook support groups?

I live near Melbourne but I don’t know much about cardiology. (My dysautonomia is on the auto-immune side, not the cardiolody side.)

I could mention a couple of names in Melbourne in private practice, but whether they would be the best, I don’t know.

Finding out who does what in the public system is a bit of a mystery to me. I think they get you to the right person in an emergency, but finding that person as an outpatient can depend on your GP or other specialists being clued up or being willing to put in some time asking around.

Also, I’m sure you’ve already put this to them, but can none of your specialists do this, use their contacts? I find some doctors can be very lazy, unfortunately.

P.S. Dr Dennis Lau in Adelaide might be a possibility, but he’s expensive. He is a cardiologist. He seems focued on POTS from his research, but his actual practice could be much wider. Presumably your GP could speak to someone at Dr Lau’s practice and see whether it might be worthwhile.

[Pistol]

8 hours ago, Jas said:

Just wondering would autonomic neuropathy cause heart failure ? are autonomic neuropathy and dysautonomia the same thing ?

@Jas autonomic neuropathy is often caused by diabetes and yes - it CAN cause heart failure. Here is an article describing it: 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5763036/#:~:text=Cardiac autonomic neuropathy (CAN) is,increased risk of cardiovascular mortality.

Cardiac autonomic neuropathy and dysautonomia are not the same thing. Dysautonomia is the dysfunction of the ANS, which can have several causes. Autonomic neuropathy can be the CAUSE of dysautonomia, but there are other causes. For example there is neuropathic POTS, hypovolemic POTS and hyperadrenergic POTS ( among other types ). 

[Jas]

Thanks Pistol, it is a great article, thanks so much, it will help me a lot.

Jas

[Jas]

Thanks very much Sarah for all the info, good idea I shall try that -facebook group!

Jas

[MaineDoug]

Hi Jas,

My advice is to seek care at a university affiliated teaching medical center. I live in Maine, USA. None of the doctors in my area were able to help. 5 cardiologists, 3 neurologists, 2 endocrinologists all told me “not in my wheelhouse”! Didn’t even refer me. I was bedridden for 8 months! On the advice of my GP I moved my docs to New York City, a 12 hour drive. But worth all the driving, like night and day, my new docs know what they are doing, respect and listen to me, and I finally have a treatment plan.

Finally some hope! Don’t give up until you get the care you deserve!

Best wishes to you! 

Sincerely,

Doug

[lschwartz408]

Hi Doug,

 

what is the name of your doctor in NYC? What hospital is he/she affiliated with?

thanks for the referral!