Anyone in Australia visited Dr O'Callaghan

[katcanny]

Hi all!!

just wondering if anyone from Aus has seen Dr O'Callaghan as a specialist for POTS? I am awaiting my appointment apparently from what I have heard from staff at the hospital he is ridiculously obsessed with POTS. Just want a heads up as to what I can expect 

[Macca]

Hi Katcanny

I used to live in Melbourne (in Brisbane now) and Chris O'Callaghan was my POTS doc for most of the time I was there. In short, Chris is great; really caring, takes the time to get a good patient history and he has a very good knowledge of POTS, particularly relating to hyper mobility and EDS. He can also prescribe Midodrine, which you may already know requires special approval via the PBS. If you are seeing Chris at the Austin the consult is also bulk billed.

The only downside I found was that Chris is particularly focused on hyper mobile and EDS related POTS and he couldn't help me as much with my neurological issues (I also have small fibre neuropathy). He also doesn't proactively prescribe Mestinon, which has proven to be my most helpful med, however he was happy to prescribe it on my request.

The other doc I found to be really good in Melbourne was Dr Victor Gordon at Monash Neurology. He runs the autonomic testing clinic at Monash.

All the best

[katcanny]

Thank you so very much! It has made my night hearing what you said sounds so positive. I am unsure what type of POTS I have as yet, I am lucky that I was diagnosed quite early from what I have read it can be a long process. I am trying to adjust to this and have become very paranoid about heart rate and going out anywhere incase I feel horrible. My mum has pretty much had to be around me all the time which is hard as I'm a mum myself but I don't trust my body anymore! I am more than happy to get up and clean the house feeling crappy as long as someone is there incase something happens to me. I don't want to decondition myself anymore that what I already did. Any hints or tips for me? 

[Macca]

Hi Katcanny

While POTS is a hard condition to manage, it sounds like you are making positive progress with an early diagnosis and seeing Chris O'Callaghan. I'm a Dad, so I know how hard it can be to have POTS and look after your kids (my wife has been amazing over the years since I got sick) particularly when you are still trying to stabilise your condition.

Something that may help you is to see an Exercise Physiologist who has a good knowledge of POTS and who can help you manage (& hopefully gradually improve) your physical capacity. When I lived in Melbourne I saw Nathan Butler at the Active Health Clinic in Blackburn. Nathan specialises in treating people with POTS and also people with chronic fatigue syndrome:

I found that pacing myself and slowly but steadily increasing my exercise was a really important component to improving my POTS and physical capacity. 

When I first got sick in 2011 I also saw a psychologist who specialised in helping people adjust to living with chronic illness. There is a psychologist at the Active Health Clinic and if it is the same person as a few years ago, then I believe that she has POTS too, so first-hand knowledge of what you are going through.

Your may already be aware that your GP can organise a chronic disease management plan for you that will provide additional Medicare funding for the allied services such as an exercise physiologist or psychologist. I've provided some details below in case you need some info:

http://www.health.gov.au/internet/main/publishing.nsf/content/mbsprimarycare-chronicdisease-pdf-infosheet

Best wishes.

[Sarah Tee]

@Macca, I know this is an old post, but do you happen to remember the name of the psychologist who you saw back then?

I have been trying and trying to find someone who can help with chronic illness with no luck.