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Temporary Reversal of POTS symptoms


dizzy55
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Hi. I'm new to this board and looking forward to chatting with you.

I'm just wondering if anyone has got any ideas as to what was going on with me last week when I was due to have a Tilt Table Test please. Unfortunately I had to cancel it as my symptoms seemed to temporarily reverse.

My problem is normally high blood pressure and high heartbeat on standing. When taken at the hospital the top figure has been as high as 195 over 110!  The day before the TT test, after standing for about half an hour (I can never manage more than a few minutes before I'm forced to sit down) my BP was

104 over 73, yes really :der:  My pulse was about 119 though.

I thought I must be going down with something (my POTS appears to be immune related) but I didn't. I'm totally puzzled as to what could have caused this.

Has anyone else had a similar thing happen to them please.
 

 

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Hi Dizzy, POTS is typically indicated by the change in heart rate, a +35 change from laying to standing. With your heart rate at 119 it still sounds like you were still experiencing the typical high orthostatic heart rate seen in POTS, even though your blood pressure was not as high as you mentioned it sometimes has been.

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Forget the BP, it's your heart rate that is the indicator. When my POTS symptoms first got really bad my BP was very low, even as low as 65/32. Then over the last nine years it is much higher and I have shown signs of POTS whether BP is high or low. I got diagnosed last year and my BP was above average. 

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Hi, there! Welcome :)

The actual diagnosis for POTS is symptoms that persist for 6+ months, and a HR of 120bpm or an increase of 30 bpm upon standing, without the presence of hypotension. Like TCP said, blood pressure isn't as important as HR.   You basically met the criteria I think.   Was the doctor who diagnosed you an autonomic or POTS specialist?  We have a list on the main dinet.org website which includes specialists throughout the world, you can search for someone in your area if you would like to consider being retested. http://dinet.org/index.php/physician-list

This is from Dr. Raj, our medical advisor and a top POTS specialist, from his newest paper in 2015:

"Postural tachycardia syndrome (POTS) is a form of chronic orthostatic intolerance in which upright posture is associated with an excessive increase in heart rate (HR) and incapacitating symptoms. An expert consensus statement [1] defines POTS as a HR increment ≥30 beats/min within 10 min of standing or head-up-tilt (HUT) which is sustained in the absence of orthostatic hypotension (a drop >20 mmHg in systolic blood pressure (BP) or >10 mmHg in diastolic BP). Children must meet a higher HR threshold ≥40 beats/min for a diagnosis due to their greater physiologic orthostatic tachycardia. Patients with POTS experience cardiac and non-cardiac presyncopal symptoms chronically (≥6 months). POTS is not considered to be a unique disease but rather the common phenotype of a number of heterogeneous, overlapping pathophysiological processes"

http://link.springer.com/article/10.1007/s11910-015-0583-8/fulltext.html

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Hi Sarah. Thanks for the links. After 10 years of symptoms, I diagnosed myself but the Doc rubbished me. I insisted on standing for the period of my consultation and he reluctantly referred me to a Heart Specialist in 2013 who thought I had POTS. It isn't until now that I've actually been referred to a POTS Specialist. The referring Cardiologist said, in view of my high BP, there might be one drug, Midrodine I think, that they could try me on so I didn't want to give them the impression that my BP was low! They did give me a 24 hr BP monitor the week before but I don't know the results yet.

I've also had M.E. since 2000, hence the foggy brain and have other health problems.

I felt awful cancelling the appointment but it's my one chance to get a true diagnosis and I didn't want to blow it!

Has anyone else noticed that their symptoms improve if they've got something like a cold. Also eating only 500 calories occasionally in a day (now that doesn't happen very often as I love my food!) seems to help as well.

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Hi,

  I had a significant improvement in symptoms once while meeting with a doctor. I attributed it to the excitement of finally getting medical access and meeting someone who would talk to me and take me seriously - I think adrenalin is a vasoconstrictor and that temporarily improved my venous return. This can be very frustrating!

  I also have my symptoms improve when I'm sick - a fever reduces my brain fog. 

 

   

 

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Hi Green. That's a really interesting theory. I was kinda excited to have a proper TT Test. Good to hear someone else who's symptoms improve when they're sick. I had been ill with a virus when I had my autonomic testing - typical - but luckily (?) it still showed up that I had autonomic dysfunction, even though I managed to stand the whole 10 minutes! It's like when you take a very ill Child to the Docs and they end up running around the waiting room isn't it?

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  • 1 month later...

Hi.

Thought I'd update you. I went for the TTT last week and I knew it wasn't going to show up anything because, very unusually, I had no symptoms. I felt fine during the test and even when they sprayed the Nitro. Conclusion - you don't have POTS and you need to exercise. On telling the Dr. that I can't due to having M.E. she asked what that was. Really?

I've been unable to stand for 14 years due to my BP and heart rate rising and in the past Specialists have said they thought I had POTS (presumably the hyperadrenergic type). The result was obviously disappointing as I had high hopes that they might be able to help me. I did ask if I would still be able to see the POTS Specialist and was told that they may want to do some more autonomic testing and that I was on his waiting list.

Just wondering if anyone has any thoughts on the above and if it's possible to 'fail' a TTT but still have POTS. Any help would be appreciated please.

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This morning I decided to take some readings on waking and my pulse went from 65 to 104 in less than a minute on standing. Realise I probably had some sort of virus during the test as I was sleeping most of the day and didn't have any appetite (which never happens). Does anyone else find their symptoms abate if they're ill. Would be interested to know.

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  • 3 months later...

The 195 / 110 bp reading peaks my interest.  Have you had bp spikes like that in the past?  Do you notice any other symptoms when that happens like becoming abnormally pale, having tingly feet or hands, eye pressure, or vision problems?

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