Good POTS Specialist in NZ or Australia? (suggestions please)

[OverTheHills]

Hello All

I think I need to see a specialist about managing my POTS (confirmed by tilt table test 3 or 4 years ago).

I have been taking 20mg propanololx2 a day for a number of years which certainly increases my ability to be upright during the day. I eat some extra salt and drink plenty of fluids (maybe 3 L a day) . I tried Florinef for potential blood volume issues and this was absolutely brilliant at first, I felt wonderful but after a few months it became less effective and then eventually started giving me very frequent migraines headaches (without any of my usual triggers). The migraines have stopped since I discontinued Florinef. But now I'm close to housebound again a lot of the time.

I have also tried a small dose of Calcium channel blocker but this had no effect. I don't have much wiggle room as (when taking propanolol) my blood pressure hovers around 105/60 and pulse 55 bpm. I have lots of allergies and develop new food intolerances frequently since getting ME 11 or so years ago.

I think I need to see a POTS specialist to get advice on how to go forward here - preferably one who understands the basics of ME. I've seen Dr Vallings.

I live in NZ (wellington region) but I'm prepared to travel, including Australia.

Any suggestions?
All help greatly appreciated.

OTH.

 

[taniaaust1]

H, Dr Donald Peter Lewis I'd view as probably the top Australian POTS specialist for those who have ME/CFS http://www.cfsdiscovery.com.au/dr-dp-lewis-medical-director--owner.html .

I know he's really up with the POTS stuff (and apparently keeps up with ME research too). I know he's had some of his severe POTS patients trial saline IVs. I've spoken to him on the phone and he was very easy to talk to and seemed down to earth. If you see him once in person, he'll do phone appointments (well he told me he would with me but unfortunately I cant get to him the once as I cant fly on a plane due to my MCS and would need someone to push wheelchair).

He also helps train other Medical Practioners on these illnesses and will work with them, so can work with your doctor over there once you've seen him. He's in Melbourne

http://www.cfsdiscovery.com.au/
............

When you have ME you cant go to any POTS specialist (I tried the professor who specialises in autonomic disorders and POTS at the Royal Adelaide Hospital but she wouldnt even believe me with some of the symptoms I have going on), as they tend not to know anything about ME and the most common recommendation for POTS is exercise, so its very important to see one which is ME aware to like Dr Lewis (I assume the other dr at his ME/CFS clinic would be well trained in his knowledge on POTS and ME to).

There is no ME/CFS AND POTS specialists in Sth Aust.

 

[OverTheHills]

Thanks Tania that sounds like a great suggestion, really helpful. I will look up his POTS approach online/try a phone call.

I am sorry that your situation is so dire and makes it so difficult for you to get the help you need, cross my fingers that things improve a bit for you.

OTH

 

[kangaSue]

What, you choose to live in Wellington? Jeez, you must be ill!

If you posed your question the other way, specialists to avoid, I think the thread would run into multiple pages at a fast rate of knots.

It's not in connection with ME/CFS but I've heard from a friend who's in a Facebook Dysautonomia group that Dr Robert Henderson in Brisbane is well regarded in the area of POTS.

My only experience with him is that he, as the Director of Neurology at the Royal Brisbane Hospital, was the consultant analysing my autonomic function test panel results. I think he's back doing private practice in Brisbane.