Do you have experience with autonomic testing or autonomic specialists in Australia?

[Steven]

Hi. I'm new to this site but I have been learning about dysautonomia and POTS for a while, following years of repeatedly being misdiagnosed by doctors who were at a complete loss to explain my symptoms. Following my own research, and monitoring my heart rate and blood pressure changes between lying and standing for the past few weeks and continually having heart rate changes consistent with POTS, I am due to see a neurologist in Hobart tomorrow to get a referral for autonomic testing in Melbourne.

Does anyone here have any experience with getting autonomic testing in Melbourne, or in Australia?

Does anyone have any experience with Dr Sue Corcoran or with any autonomic specialists in Australia, or with Caulfield Hospital or The Alfred Hospital for dysautonomia, POTS or autonomic testing?

[Macca]

Hi Steven

There is an autonomic testing clinic at Monash Neurology, based at the Monash Hospital in Clayton. As far as I know, they do the most comprehensive autonomic testing in Melbourne. Tests include tilt table, QSART sweat testing, Valsalva Blood Pressure Response and Small Fibre Neuropathy tests. The clinic is run by Dr Victor Gordon.

I only know of Dr Sue Corcoran by reputation, which is that she is very thorough and knowledgeable, but perhaps an abrupt bedside manner. Dr Chris O’Callaghan is noted on the DINET website and he is based at the Austin. He was my Specialist when I lived in Melbourne and he was knowledgeable and caring. See link to his clinic below:

http://www.austin.org.au/page?ID=127

Good luck and hope you get the care you need.

 

 

 

 

[Samantha91]

IHey

Im in Australia and I see a great cardiologist in Adelaide Dennis Lau. He has helped me lots and is willing to help me in anyway! 

Its hard for me as I live in Port Lincoln so I don’t have any local doctors knowing about the condition! 

[Steven]

Thanks, Macca and Samantha.

I've been to the neurologist in Hobart today, who is prepared to refer me interstate for neurology aspects of autonomic testing but not for cardiology aspects of autonomic testing. She's not convinced that the cardiology aspects of autonomic testing can't be provided locally in Hobart, despite me speaking to people in the cardiology department at the hospital and them confirming that they only offer basic investigations in the area of autonomic testing and that I will have to go to Melbourne for more comprehensive testing.

So, for now, I'm getting referred to Monash Neurology for neurology aspects of autonomic testing and being referred to Royal Hobart Hospital for basic cardiology testing, so the cardiologist can then refer me to Melbourne for cardiology aspects of autonomic testing.

Basically, now that I've done the research and delivered them my self-diagnosis, they should be able to confirm a diagnosis of dysautonomia/POTS in Hobart, but won't be able to differentiate between types or causes of POTS. It seems, for example, based on my discussions with people from the hospital and its outpatient clinics, that I can get a basic tilt table test in Hobart but can't get blood taken in the horizontal and upright positions during the tilt table test, to detect changes in levels of catecholamines (epinephrine, norepinephrine and dopamine) with changes in posture. This makes things unnecessarily complicated and will likely mean that basic testing done in Hobart will have to be redone in Melbourne, which would also make it unnecessarily wasteful. I wonder if I'll have to go through the same kind of mess in the future for an opthalmologist, a gastroenterologist, a rheumatologist, a dermatologist etc.

At least I seem to be getting closer to actually having an appropriate formal diagnosis after 4 years. Maybe I'm also getting closer to having a knowledgeable doctor.

[Samantha91]

Living in a rural town is horrible for knowloadge of umcommon conditions as I’m finding here in Port lincoln south Australia. I can’t even get a MRI here have to drive 8 hours! I have to do Skype appointments with my cardiologist so maybe in the future you can Skype?

For my diagnose I had a tilt test without blood taken and also heart monitor to have heart rate readings. 

No real positive tests came back besides my heart rate. Which makes me wonder if I really have it! I have autonomic dysfunction and IST. 

Hope you find a good doctor to help you out!!  

[Steven]

Skype could be a possibility for me for interstate consultations when no physical testing or in-person component is needed. Tasmania has medical travel assistance available where something is not available in a patient's area or in the state.

I just did a quick search and South Australia also has medical travel assistance: http://www.sahealth.sa.gov.au/wps/wcm/connect/public+content/sa+health+internet/health+services/country+health+services/patient+assistance+transport+scheme

You don't need any positive tests beyond the relevant heart rate increase during a tilt table test to confirm a diagnosis of POTS. Part of the problem with trying to find the correct diagnosis is that most tests typically seem normal to doctors when someone has POTS.

I am an academically minded person, so I have been reading up on research done at places like the Mayo Clinic and Vanderbilt University, and have purchased some text books on the autonomic nervous system, clinical autonomic disorders, autonomic neurology and autonomic disorder case studies. There are also a range dysautonomia/POTS Youtubers.

The idea behind taking blood while lying down then taking blood again once tilted upright is basically to test for hyperadrenergic POTS, by measuring how much the levels of chemicals that affect the sympathetic nervous system change when posture changes.

It's a bit more complicated than that, because the issue can be:
- too much or too little of one or more of several chemicals get released with changes of posture,
- one or more of the chemicals that are released with changes of posture get broken down too slowly or too quickly, producing a similar effect to too much or too little being released,
- there are abnormally small or large numbers of the receptors that these chemicals activate on various organs, producing a similar effect to too much or too little of the chemicals being released
- or a combination of these.

POTS can be hypovolemic (involving low blood volume), hyperadrenergic (involving the changing balance of chemicals in the body) or due to autonomic neuropathy (nerve damage or dysfunction that can occur in various parts of the body). A single patient can also have a combination of these and the relative prominence of each can change depending on factors such as level of hydration, physical activity, temperature, and consumption of things like caffeine or alcohol.

I can tell from my own testing with a blood pressure/heart rate cuff, combined with blood tests, brain scans etc. ruling out other conditions, that I meet the criteria for POTS, but it's hard to pin point the biological mechanisms involved in my specific case without proper medical testing. Different biological mechanisms would require different approaches to treating or managing symptoms.

[Samantha91]

Yes I do get PATS when I travel away but coming up with the money in the first place is hard for me cause of money issues.

I’m only 26, and I’m only new to all of this so it’s quite confusing. 

Doctor did say mine is nerve related. 

[Steven]

I've found that a good, accessible overview of POTS is: https://www.youtube.com/watch?v=8UPMYNkm6Bc

...and a good overview that gets into more of the technical details of POTS is: https://www.youtube.com/watch?v=faScrmgKcWg

[Steven]

There's a new twist. The neurologist I saw in Hobart recently told me she was going to refer me to Monash Neurology for autonomic testing. I received a letter from the neurologist today written to the Blood Pressure Disorders Clinic in the Department of Clinical Pharmacology at the Austin Hospital, which means Chris O'Callaghan or one of his colleagues, asking them to review me and arrange further testing.

Can anyone tell me whether Chris O'Callaghan typically gets autonomic testing for his patients done through Monash Medical Centre or whether he uses the Austin Hospital, or somewhere else like The Alfred?

Have you found that Chris O'Callaghan has a thorough enough knowledge of the subtleties of POTS to know what autonomic tests to order to identify the biological mechanisms involved in a specific patient?

From watching a talk he gave to a group of ME/CFS people and reading some things he has written, he seems knowledgeable about what symptoms people present with but perhaps is not so familiar with leading international research on POTS. In case anyone is interested, the talk is at https://vimeo.com/110989159

The following is a quote that I think is a bit concerning from his listing at http://www.healthdirectory.com.au/Medical_specialists/Endocrinology/56208,479667/Assoc. Prof. Chris O'Callaghan/

Quote

 

What is POTS

The Postural Orthostatic Tachycardia Syndrome is a syndrome that is almost identical to 'low blood pressure', except the blood pressure is not found to be low. Instead, the hallmark of POTS is a fast heart rate when the patient is upright.

What is dysautonomia?

To tell the truth, I don't really know. I think it is probably just another name for POTS, which is probably also another name for low blood pressure.

 

 

I know from watching his talk that his knowledge is more nuanced than it probably comes across if all someone has read is the quote here, but it seems that he might have his own pet theory that deviates significantly from leading international research on POTS and/or that he doesn't really get how POTS differs from related or broadly similar conditions in a practical sense beyond the diagnostic criteria.

Feel free to private message me with any helpful info if you don't want to discuss specific doctors, hospitals or outpatient clinics publicly.

[Carlz]

Hi I have POTS, CFS/ME and Fibromyalgia and I’ve recently come across IV saline therapy for POTS and CFS/ME and I’m wondering if anyone knows of any doctors in Adelaide or Melbourne that prescribe IV therapy for POTS. My cardiologist is Reluctant to prescribe it, as he never has before and wants evidence from another doctor that does prescribe it. So I’m wondering if anyone knows of any doctors in Adelaide or Melbourne that do?

[Scout]

Hi folks. I am afraid I don't know of anyone in Melbourne. 

I am currently looking for someone in Sydney who treats POTS - especially hyperadrengenic. Struggling to find anyone. 

Perhaps I need to travel interstate. Am very desperate. 

Wish I could be of more help and offer suggestions. 

[Carlz]

When I lived in Sydney I saw Dr Melissa Doohan at the Royal North Shore Private Hospital. She was recommended to me because she specialised in POTS, she was excellent.

Theres also the POTS clinc at the Alfred Hospital in Melb and also the Autonomic Clinic in Heildaberg in Melbourne. They are where I have now been referred too.

hope that helps 

[Sarah Tee]

@Carlz, I know this is an old post, but if you are still trying to find someone to help, I know of two specialists in Melbourne who will order IV saline therapy for patients who haven't responded to the usual medications, lifestyle changes, etc.

• Dr Chris O'Callaghan, private rooms in Heidelberg, public patients at the Austin
• Dr Edmund Song, private only, https://www.drsong.com.au/locations

I will add that getting it ordered may only be half the battle unless you can attend a hospital at which the specialist works or has some connection.

I live in the country and Dr O'Callaghan sent the order to Bendigo Hospital. We had a seven-month nightmare of horrible bureaucracy and terrible communication (actual nursing staff were lovely) only to find out there was basically an infinite waiting list for someone like me (i.e. not in danger of serious injury or dying).

But when I started seeing Dr Song, who used to work at Ballarat Hospital, he ordered the fluid therapy and I was booked in and had my first session there within a month.