Looks like they are finally training aussie drs in POTS (at least in NSW)

[taniaaust1]

I just came across the following "Clinical update no. 460 11 August 2016" at the NSW gov website and its all about POTS http://www.heti.nsw.gov.au/Global/e...of syncope and dizziness Check the pulse.pdf

 

[Snowdrop]

That looks hopeful. Although I growled at the inclusion of behavioural-cognitive therapy (their term) as treatment--fortunately it came after discussion of drug and other therapies.

 

[Lolo]

From the above clinical update

"33yr -M, insulin dependent diabetic.Discharged from cardiology after workup for
syncope, with no apparent cause found.Monitored uneventfully, normal echo, and told
no cardiac cause. Felt dizzy and fell on leaving hospital and returned to ED.
Management includes ....behavioral-cognitive therapy."

I am not going to fall down, I am not going to fall down, I am not going to fall down.
Really!

 

[taniaaust1]

One would hope that in their CBT for this POTS diabetic patient that the CBT wouldnt be walking exercise recommendations!! but maybe seated exercise instead .. part of the article

PT was D/C from the ED post investigation for syncopes. While walking out front PT was witnessed by bystander to have fallen on ground

Maybe the ED tell the patient they needed to do more walking to fix this?

I wonder if they missed the POTS at first during ED syncope investigation (they start to pay attention though when they see you fall).. here in Australia at least in Sth Australia the hospital EDs seem to have a policy now when investigating people who have syncope (collapse), they do a ONE MINUTE (often incorrectly done) standing test at the bedside.

if I was more up to it I'd be currently challenging the government on their current stand syncope test for our hospital's ED.


Im not against the CBT for POTS IF the patient is t encouraged to do the correct things and not being encouraged to do stupid things (go for a walking around your town to exercise would be a stupid thing to tell any POTS person and telling a ME person to exercise is often just stupid), BUT certain exercises are not harmful usually to a diabetic patient with POTS and POTS may be helped by exercise when caused by non ME issues.

note the diabetic community is one of the illness in which POTS has been found to be more common in. Im glad this article used diabetes to get out about POTS and not used ME and POTS as I think the diabetes will help drs pay more attention to the problem of POTS being out there.

 

[taniaaust1]

Do anyone here know of a NSW dr who deals with POTS patients?

I met someone online who is there (a non ME/CFS person) and Im 90% certain she has POTS (if not POTS Im certain she has one of the dysautonomia issues). She's spent now past 6 weeks ringing around trying to find a dr for it after I told her I think she has POTS and she then looked it up and believes so too.

She's has finally got an appointment for a tilt table test and to see a dr who knows of this disorder at the Prince Alfred Hospital but its OVER A YEAR WAIT FOR THE APPOINTMENT and she's quite sick with it. She's being very disabled with the condition.

crazy to have to wait over a year for a test and see a dr who knows about a conditon you probably have to get a correct diagnoses and treatment. Anyone got any dr recommendations I can give to her a NSW person with POTS or dysautonomia?

She's so far among the specialsits she's seen THREE different neurologists who knew nothing at all about POTS (hadnt heard of it) and just been now given a diagnoses of "Functional Neurological Disorder - Unspecified" cause they cant figure out what is wrong (before that they were telling her her symptoms were in her head and psychomatic). She's just spent 10 days in hospital while they tried to figure out what was wrong.

They are now telling her she's gone over the quota of tests they are allowed to do to try to find out what is wrong with her but they havent done any POTS testing

From what I can tell there is no real reason though for them to think she has a neuro disease if her drs were more aware as all her symptoms could be coming from the POTS but of cause they dont know that so they are now thinking she has some strange neuro disease when she's looking like quite classical POTS symptoms eg trouble with warm showers, sensitive to things POTS people often are (alcohol, caffiene) etc etc

 

[Lolo]

They don't seem to realise that it would be cheaper to get people diagnosed and treated sooner rather than later.

I read somewhere recently a better suggestion for POTS is recumbent exercise, like a recumbent bicycle or rowing machine.

 

[purrsian]

That's pretty bad to have to wait one year for a test. I had mine in Brisbane with less than a month wait! Most doctors up here seem to have at least heard of it, two doctors I've seen so far are actually quite knowledgeable about it. One doctor who was quite young, so I think she'd recently graduated, had never heard of it - this makes me think they still aren't teaching new doctors about it and that it's only doctors experienced in chronic disease management that educate themselves about these types of problems.

She might not be able to be officially diagnosed, but explain the poor man's test and if that's positive, then she can start implementing some lifestyle strategies at least (water, salt, compression stockings etc). I'd already decided I had POTS before my diagnosis, although I didn't start to change things till after my test so it would reveal the extent of my symptoms. If she has to wait a year though, she'll probably want to try some lifestyle changes to help her survive that long without treatment.

 

[taniaaust1]

I came across the following list yesterday http://www.me-ireland.com/aus1.htm of drs in NSW and that list has quite a few who are POTS aware or can help POTS people on it so Ive been able now to pass this info onto her.

 

[purrsian]

That's excellent. I looked up the QLD section and found a few potential docs for me too!