gillyann

Postural orthostatic tachycardia syndrome (POTS)

23 posts in this topic

Gerry I hope you manage to get some answers for your son. I don't know if the charity was of any use but they helped us sort out my daughters problems.

 

All I can tell you about is that her Tilt Table test was positive and that she found it unpleasant because of course they where trying to see if she would faint and how quickly. She did feel quite rough for the rest of the day.

 

Do let me know Gerry how he gets on.

 

Jensue

Share this post


Link to post
Share on other sites

Jensue,

 

Thanks for replying again, looks like the tilt table test will be done without isoprotenol, my son is concerned because if the result is negative we will not believe it. I agree with him. I will let you know how he gets on.

I have not contacted the charity yet, I am going to wait until after the tilt table test, until then I am not sure what questions I need answered!

 

Thanks again

 

Gerry

Share this post


Link to post
Share on other sites

Hi Gerry,

 

I had the tilt table test done years ago, but without any medication. For me it was one of the easiest tests I've ever had -- nothing invasive, and no worse than standing up. In fact, not as bad as just standing up as they do it so gradually.

 

I couldn't discern any reaction myself, nothing more than mild dizziness. However, the test showed that I had orthostatic intolerance, much to my amazement, as I'd never heard of such a thing.

 

They tried to also do ambulatory monitoring on me, but every time I stood up, the alarms went off. They went through quite a few machines before they realized it was my blood pressure going down to zero every time I stood up, not machine malfunction. So they had to do quiet room bp testing instead, which showed I have labile hypertension, too. I suspect the labile hypertension and the orthostatic intolerance are probably related, as a general failure of blood pressure to properly adjust.

 

That said, I really don't quite understand why they have to run such tests. It would seem to me, silly goose that I am, that being dizzy or having that "sinking sensation" whenever you stand up, or stand too long, would be a pretty sure giveaway to orthostatic intolerance. But, I'm not a doctor, I have no medical training at all, and far too much common sense for my own good.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

Share this post


Link to post
Share on other sites

<<But, I'm not a doctor, I have no medical training at all, and far too much common sense for my own good.>>

 

Oh, Shelley......thanks for the laughs. I think that definition could explain many of us!!!

 

Take care, Everyone.

Margaret

Share this post


Link to post
Share on other sites

Gerry,

 

I am so sorry to read of the trouble your son...and you as his father...are having in regard to this health problem.

I so wish there was an easy answer for you both, as I know how disconcerting this has got to be...the not knowing.

 

I will be keeping and sending positive vibes your way, as you wait to find resolve.

My hope for you both, is an expeditious treatment with the best possible results.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now