Jump to content
Search In
  • More options...
Find results that contain...
Find results in...
Samantha91

Australian people

Recommended Posts

Hello :)

ive been diagnosed with autonomic dysfunction in August this year but have been struggling for 6 years and finally have the answer. I’m 26 years old living near Adelaide in south Australia  

Im finding it so hard to understand and getting frustrated that no one understands. 

Was just wondering if there was anyone in Australia who has the same condition and was wondering how they got help and what helped them. 

Would love to get some insite how other people deal with it. 

Im feeling like this condition is taking over my life and I can’t do anything anymore. 

Hope there are other people near me that can tell me some info :)

Share this post


Link to post
Share on other sites

Hi Samantha 

I’m a fellow Aussie, based in Brisbane. 

I’ve got a great doctor I see here in Brisbane who takes care of my POTS (a sub-type of autonomic dysfunction). I have found two meds that work for me quite well (Mestinon and Midodrine), but it was a year or so of trial and error to land on those two. There is a list below from DINET that provides details of helpful medications:

A lot of people with autonomic dysfunction take Florinef to help with low blood pressure and Tachycardia, but unfortunately I couldn’t tolerate it.

If you have been diagnosed in Adelaide does that mean you have a specialist there who is caring for you? If not, there are quite a few autonomic dysfunction specialists in Australia, but I don’t know if any in Adelaide sorry. There are some in Melbourne if you’re able to travel a relatively short distance. The DINET website has the details for Dr Chris O’Callaghan who is based at the Austin Hospital in Melbourne. Chris is very good and he will do a Skype consult for people who are interstate.

I would also suggest using an Exercise Physiologist who is familiar with autonomic dysfunction. I found graded exercise was very helpful in improving my functioning over time. I had to start very slow, but increased over time and my overall health improved with increasing exercise tolerance. There’s a place in Melbourne that specialises in POTS:

http://www.activehealthclinic.com.au/faqs-about-cfs/orthostatic-intolerance-pots/

I used these guys when I lived in Melbourne and they are great. Pretty sure they will do a Skype consult. 

The only other advice I would provide is to be patient with yourself and accepting that you have a chronic illness. It’s a very challenging condition, but many people (me included) get much better over time. Hang in there. 

Best wishes.

Share this post


Link to post
Share on other sites

Thankyou that is really helpful. 

I just started Midodrine this week and I feel 10x worse! Only on 5mg half a tablet 3 times a day. 

it makes me feel sooo tired and nausea. 

I have a great docotor in Adelaide but unfortunately I live 8 hours away from there and doctors where I live have no idea about the condition. So it’s extremley hard. 

Ive been sick for 6 years and I’m only getting worse as time goes on :(

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...