My test for POTS

[whisperit]

Just back from my tilt table test for Postural Tachycardia Syndrome.

Started by soaking my hands in hot water for 15 minutes because they were blue and the sensor pads couldn't pick up a pulse! Then 20 minutes stood upright whilst being monitored and observed by the consultant. A squirt of GTN under the tongue and some more monitoring.

Result - my pulse rose by about 20 beats per minute on standing. I "failed" the GTN challenge, as my BP dropped to 80/50, so they had to stop the test at this point.

Conclusion = I do have issues with BP and heart rate regulation, but do not meet the criteria for a diagnosis of POTS (I would need a rise of >30 bpm for this). Its possible that I would meet the criteria if I came off B blockers, but unless there's a pressing need to get such a diagnosis, the outcome is simply to continue on B blockers and otherwise manage the regulation problems conservatively (drink plenty of fluids, don't stand up for long periods etc etc)

The test was mildly uncomfortable but that's all. And I got a cup of tea at the end.

[1sam]

I'm not sure if congratulations are appropriate on not meeting criteria :s we all want a nice answer wrapped neatly with a tag spelling the disease name. I'm sorry if you didn't get one this time. What is your plan now?

Your tilt table test sounds different than mine, they made me stand slightly inclined back, not right, I felt nausea. And after some injection to dilate arteries I lost concsiousness, diagnosis: vasovagal syndrome (disregulation). Anyway the treatment is the same, BB.

Have a good night rest, you can deal with this tomorrow hugs!

[whisperit in reply to 1sam]

Thanks 1sam,

I'm not sure what to think yet either. I was amused when, after the squirt of GTN, both the consultant and nurse suddenly leaned forward to stare at the monitor and began asking, "Are you feeling OK?" every couple of seconds.

A couple of minutes later they stopped the test and then explained that my BP had dropped too much to continue. The consultant said he was surprised that I hadn't complained. As I explained, "It's hard to answer a question like, 'Are you feeling OK?', because I feel like sh*t ALL THE TIME!"

Hope you are managing.

Mx

[EOLHPC in reply to whisperit]

👏👏👏👏 EXACTLY! Well said!

[Hidden in reply to whisperit]

I don't know whether this is a good result or less good for you as I don't think there are treatments for PoTS are there?

I haven't been offered this test at all despite being thought to have autonomic issues probably. But I think if I did have it my reaction would be like 1sam's because I do suffer from vasovagal episodes and so did both my late parents.

How do you feel about not quite meeting the PoTS criteria - is this good or bad? The cuppa sounds much needed at least! X

[whisperit in reply to Hidden]

Hi twitchytoes,

Like you say, there may be little to be gained from the label. My main concern is that without it, the symptoms I have (they haven't magically gone away just because they don't qualify for a special name) will not be taken seriously. As if to confirm this concern, when I asked the consultant what he thought might be the mechanism at work, he clearly knew nothing about my auto-immune issues and started talking about the role of anxiety in causing heart symptoms.

Is it something you have considered going for? x

[Hidden in reply to whisperit]

Oh I see what you mean about assumptions resulting in non diagnosis - always sets alarm bells ringing when they bring anxiety into the equation I know!

No not really considered this for myself but I am going for a cardiac workup sometime soon. I think my problem is more about other autonomic dysfunction re bowels and swallowing and non sweating/ night sweats plus the vasovagal episodes. I've done some research but know that these specialists are unlikely to grasp the complexity of Sjogrens or other connective tissue diseases. I'm on hypertension med and only time it's ever gone the other way was when I took nigedipine when I fainted as my bp seriously dipped a couple of times. I've had ECGs many times and all looks fine apart from ectopic beats - which I accept are noticeable when I'm stressed or on certain medications. The trouble with investigations is that when nothing much shows, instead of calming down I get really paranoid! TX

[whisperit in reply to Hidden]

yes, and of course anxiety can be a very real and difficult problem and I would never want to downplay it, or suggest that it is not as "real" as a physical illness. But for many of us here, it seems to me that "it's anxiety" is more of a kind of default suggestion when the medics are reluctant to say, "I have no idea".

I agree with your paranoia too - but I think its based on experience, don't you?! x

[Galaxy2]

Hi There

I do have a diagnosis of Pots and remember coming off my ivabradine ( not classed as a beta blocker but slows the heart rate) for my tilt table test. On it I don't get such a dramatic rise in heart rate so it wouldn't have indicated a positive result if I'd have had the test on it.

Do you get a high resting heart rate too? I believe the criteria for pots is 30bpm increase on standing or over 120bpm on standing regardless of resting heart rate at the start of the test.

Not that I wish a diagnosis on anyone but there is treatment for it with an official diagnosis.

Jenny

[whisperit in reply to Galaxy2]

Yes, I have a resting heart rate of >90 bpm, and have done for some time. I raised the possibility of POTS with my GP after finding that I couldn't tolerate standing for more than a couple of minutes without getting nauseous and shaky. I did a home version of the "standing test", and found that I "passed" the POTS criteria with flying colours - going from 98bpm to 135bpm within 5 minutes of standing.

Hence the referral. But while waiting for the appointment, my GP said he thought I should go onto B blockers anyway.

For this test, though, I was given no instructions about omitting my meds or anything. It did seem a bit odd, but what can you do?

[Galaxy2]

I wonder if you should speak to your doctor again re being on the beta blockers at the same time of the test. Its so limiting having these symptoms, not being able to stand without symptoms makes so many everyday things impossible.

I have an excellent cardiologist now who specialises in POTS, which area of the country are you in?

[whisperit in reply to Galaxy2]

Thanks, I agree! I'm in South Wales. I have a review with my rheumatologist next week, which is going to be crucial; I feel so unwell at present, but am not confident that this is being fully recognised. This "non diagnosis" is concerning because it may feed the underestimation of my difficulties. So I am taking My Sister The Doctor and anticipating a "full and frank" consultation!

[misty14 in reply to whisperit]

Hi whisper it

Good luck for your Rheumy consultation. I just hope he can give you some answers as you've been ill a long time now!. In a way it's a pity you didn't qualify for POTS as it could have given you help. It comes to something when we need these labels for recognition and treatment.!. All the best misty.

[Galaxy2]

Well good luck I really hope you get something positive out of it. I live in the South East and if you were here too I was going to recommend you try and get a referral to my specialist but a bit far to travel! Such a fine line sometimes between a diagnosis or not but makes such a difference with one in many ways. Do ask me any questions if you have any and hopefully I can answer them, and best of luck with your app.

[whisperit in reply to Galaxy2]

Thank you very much, Jenny. I may take up your offer in due course x