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Postural orthostatic tachycardia syndrome (POTS)


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22 replies to this topic

#21 Gerry

Gerry

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Posted 09 February 2009 - 03:29 AM

Hi Jensue, Shelley, Susie and all,

Many thanks for your help and kind thoughts. My son had his tilt table test and I was shocked to see the affect, simply standing for a while, his heart rate jumped to ~150bpm and stayed there for the duration of the test (25mins) he was exhausted. The very nice and kind doctor had no knowledge of POTS though and put the result down to "being unfit". I started to explain the background and how my son was very fit before he became unwell and that his orthostatic tachycardia (increased heart rate on standing) was an initial symptom and not a result of being unwell, but I was droning on and lost his attention.

Thanks for the specialist contact Jensue, I am persuing that now.

Kind regards

Gerry

#22 Jeannie McClelland

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Posted 09 February 2009 - 04:26 AM

Hi Gerry,

Oh dear, doctors, what can you say? Your son is lucky he has you for a father! Will you put up a new posting once in a while to let us know how he is doing? Any idea how long it will be before you get him in to see the specialist?

Best Wishes and Warm Hugs,
Jeannie McClelland
(Retired) ISN Director of Support Services
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International Scleroderma Network

#23 Gerry

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Posted 10 February 2009 - 06:49 AM

Hello Jeannie,

I will post an update when I have some news, I don't want to bore everyone!
I just found out our main consultant is on annual leave so next appointment is 2 weeks away, I think I can't wait!!! I have names of POTS specialists, one in particular appears to be a world authority and I am told there is a long waiting list to see him. I am trying to weigh up the pros and cons of waiting for our consultant to return (I think I will need a referral anyway and he will have more clout than I do) or jumping in and trying to arrange something myself now with possibility of alienating our guy.

Kind regards

Gerry