Autonomics testing advice

livinglighter

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Hello,

I'm seeking advice about an upcoming POTS autonomic tilt table test. My appointment instructions advise me not to carry out exercise beforehand, but I am concerned the results may not give a true reflection of what is going on if I'm pretty much stable.

I also want to know if there is anything else they should be testing aside from POTS?
 

Jyoti

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I also want to know if there is anything else they should be testing aside from POTS?
Here is a list of some of the more common autonomic disorders: https://www.dinet.org/info/dysautonomia-disorders-diagnostics-info/dysautonomia-overview-r121/

There is a suite of tests for autonomic dysfunction, though the tilt table is an excellent start. It will not, however, cover all possible manifestations of dysautonomia. I learned not too long ago that the TTT is great for diagnosing POTS if it lasts for 15 minutes. That is enough. But for Neurally Mediated Syncope, you need to be tilted for 40-45 minutes. Thus, my NMS was overlooked because I had an abnormal tilt at 5 minutes --thus I got the POTS diagnosis and the test was over. A later and longer TTT led to a clear diagnosis of NMS as well as POTS.

Here is one list of possible tests: https://www.dinet.org/info/dysauton...info/autonomic-testing-for-dysautonomia-r206/

Having finally found a doctor with expertise in dysautonomia, I have had: tilt table, valsava, deep breathing, catacholamine. I am scheduled for a sweat test in a couple of weeks and after that perhaps a skin biopsy for SFN.

I am concerned the results may not give a true reflection of what is going on if I'm pretty much stable.
Do you know about the poor man's TTT or the NASA lean test? Very simple, can be done at home in 15 minutes with a blood pressure cuff and a timer/phone. I used it fairly regularly to see when my heart rate was up and how high and how long it took, along with tracking upright BP. It gave me some confidence that I had enough abnormality there that it would likely show up in a tilt. You might want to try it for your own information.

Here are directions in case you haven't run across it: https://potscare.com/wp-content/uploads/PMTTT-Instructions.pdf I measure every two minutes upon standing, though, not just the two times these directions suggest.

One more thing--for most of us, POTS symptoms are pronounced in the morning. So I know that doctors who understand it schedule TTT for as early as possible.

Good luck!
 

livinglighter

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Thanks @Jyoti

I will query the lack of additional testing given my full range of symptoms and will ask for earlier appointments.

The Neurologist has already stated if they don't find anything during TTT I will be discharged which is concerning.

I'm struggling so much with functional decline, I haven't been able to do a poor man's TTT or monitor my heart rate. I'll see if I can get hold of some equipment to do it before my appointment.
 

Jyoti

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if they don't find anything during TTT I will be discharged
What a great way to approach this! Geez. If you can't jump through this one particular hoop, we wash our hands of you. What compassion and commitment to wellness.....

This makes the longer tilt possibly more important, though. Check your symptoms against the various manifestations of dysautonomia and see what might be going on in your view. (This is not always so easy---I dismissed NMS because I had never fainted in my life--no, that is NOT me! But it turns out I am seconds away from fainting 12 or 15 times a day.) If you can get a sense of what to look for, then you might be more invested, for instance, in pushing for a longer tilt.

I have taken logs of my poor man's tilt to a few doctors and while they of course do not value it in the same way they would value their own data, it has been a useful nudge to encourage them to take my symptoms seriously and indeed to order more testing.

If you can manage a couple of those tests, it might be worth the energy. But I know---these things can take it out of you and when there isn't much to take, it gets dicey.
 

livinglighter

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I’ll push myself to carry out some readings before attending and query things with my GP.

According to my neurologist my ME/CFS diagnosis largely implies that my symptoms are somatic. They’ve been trying to discharge me ever since! But to their amazement I keep informing them about telltale signs of organic dysfunction with each review. :bang-head:

Had they just done a quick google they would be able to see automatic dysfunction also happens with ME.

This experience is so surreal.
 

Sushi

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But for Neurally Mediated Syncope, you need to be tilted for 40-45 minutes. Thus, my NMS was overlooked because I had an abnormal tilt at 5 minutes --thus I got the POTS diagnosis and the test was over. A later and longer TTT led to a clear diagnosis of NMS as well as POTS.
I can also attest to the need for a longer tilt. My autonomic testing included six different tests and two tilts, one 20 minutes and one scheduled for 45. After 35 minutes on the longer tilt my autonomic nervous system went nuts with a reading of 88 systolic and 80 diastolic, so they ended the test! I had a diagnosis of Neurally mediated hypotension. Like Jyoti I nearly faint several times a day but have enough warning time to sit down—wherever!

As far as being stable at the beginning of the test, autonomic testing is designed to destabilize you—if done properly.
 
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Hello,

I'm seeking advice about an upcoming POTS autonomic tilt table test. My appointment instructions advise me not to carry out exercise beforehand, but I am concerned the results may not give a true reflection of what is going on if I'm pretty much stable.

I also want to know if there is anything else they should be testing aside from POTS?
Hi livinglighter

A tilt table test is commonly accepted as the primary test for POTS. I think the warning about exercise means you shouldn't go the gym or run some laps before the test, but I wouldn't worry about your normal daily routine. Keep everything normal up to the day of the test.

POTS is considered a subset of autonomic disorders. Not all autonomic disorders manifest as POTS and not all of them will be detected with a tilt table test.

A full autonomic workup is more complicated than a tilt table test. A full workup could involve measuring pulse and blood pressure during special breathing maneuvers and usually a QSART test.

Not many facilities have the training and equipment to perform QSART tests and other autonomic testing, so if you think you might need these tests you might need to do some detective work to find centers that perform this testing. If your doctor's home facility isn't equipped to perform these tests, they may not take the initiative to refer you to an appropriate center. If necessary, schedule an appointment with a different neurologist at a facility that has this testing available.

However, I wouldn't worry about it until after the tilt table test. Starting with a simple tilt table test first is good practice.