Is presyncope a form of dysautonomia / POTS?

[poetessinmotion]

Hi everyone,

Today I went to the appointment with my neurologist to receive the results of the dysautonomia testing. I have to say that now I have moderate CFS, while last year I was severe and my POTS was over the roof. Back then, my blood pressure was mostly 8/4 or 7/3 and I could barely stand up. It got better with adrenal support, but I still get very dizzy, specially when I've been standing up or walking for 10 minutes or so. However, my POTS is way better, and it fluctuates between being normal and having a few crisis.

So when I went to receive the results, the neurologist told me that I don't have any dysautonomia, OI or POTS. But she said that it was found that I have presyncope, which happened upon being stood up for 7 minutes and, at that moment, they had to stop the test.

I'm very confused because they think orthostatic intolerance and POTS only happen when you get the symptoms within the first three minutes of the test, but I wonder what happens when it does after that time mark. She has given me Florinef and that's it.

Also I'd like to know if any of you have been diagnosed with presyncope and if you found any successful treatments.

Thank you in advance!

 

[Pyrrhus]

So when I went to receive the results, the neurologist told me that I don't have any dysautonomia, OI or POTS. But she said that it was found that I have presyncope, which happened upon being stood up for 7 minutes and, at that moment, they had to stop the test.

Dysautonomia is a very broad concept that can include impaired functioning of any unconscious neurological activity. It includes neurological control of blood circulation. If the presyncope is due to insufficient blood flow to the brain upon standing, then the presyncope is due to dysautonomia.

I'm very confused because they think orthostatic intolerance and POTS only happen when you get the symptoms within the first three minutes of the test, but I wonder what happens when it does after that time mark. She has given me Florinef and that's it.

I have read somewhere that OI sometimes takes up to 10 minutes to become apparent, but I don’t have a reference right now. Florinef is often prescribed for OI. Your doctor may have been confused or there may have been a communication problem.

Hope this helps.

 

[poetessinmotion]

Thank you, @Pyrrhus. Actually it is stated very clearly in the document she handed to me with the results. For her, the limit is 3 minutes. I would love to have another opinion or maybe have a paper to show her with a different opinion about the time mark to diagnose OI.

 

[Hip]

The UK NHS guidelines for diagnosing POTS:

A diagnosis of PoTS is made if your heart rate increases by 30 beats per minute (bpm) or more (40bpm in those aged 12-19) after 10 minutes of standing, or if it increases to more than 120bpm.

You may have a range of tests to confirm a diagnosis and rule out other conditions, including:

• the tilt table test – your heart rate and blood pressure are measured while lying on a bed, and the bed is then tilted into a more upright position while further measurements are taken
• the active stand test – your heart rate and blood pressure are measured after lying down, immediately upon standing, and after 2, 5 and 10 minutes

 

[Hip]

Mayo clinic guidelines for for diagnosing POTS:

For a tilt table test, you begin by lying flat on a table. Straps are put around your body to hold you in place. After about 30 minutes of lying flat, the table is quickly tilted to raise your body to a head-up position — simulating a change in position from lying down to standing up. Then, your heart rate and blood pressure are monitored for about 10 minutes. In people who have postural tachycardia syndrome, the heart rate goes up by more than 30 beats per minute when tilted up (40 beats per minute or more for teenagers). Blood pressure remains steady or changes only slightly.

 

[poetessinmotion]

Thanks, @Hip ! It was observed while the presyncope episode that I had tachycardia together with a fall in blood pressure. Would that be OI, POTS or Presyncope? I might need to ask for a second opinion.

Now I'm wondering: she said 3 minutes is the international criteria for diagnosing POTS and OI! And I have it written down in the document.

 

[Hip]

It was observed while the presyncope episode that I had tachycardia together with a fall in blood pressure. Would that be OI, POTS or Presyncope?

Presyncope appears to be just the name of a symptom: the feeling that you are going to pass out (fainting), but not actually passing out. It's not really a diagnosis; it is a symptom that may be present in certain conditions such as orthostatic intolerance.

If your heart rate increases by 30 or more on standing from a relaxed lying down position, that's how POTS is diagnosed. You can try this at home. It's easy to accurately diagnose yourself with POTS.

If you blood pressure drops on standing, in ME/CFS patients this is usually caused by either neurally mediated hypotension (NMH), or orthostatic hypotension (OH).

In OH the pressure drop is immediate; in NMH the pressure drop occurs after a long period of time standing (or also sometimes after having an unpleasant or upsetting experience).

You can have POTS as well as having NMH or OH.

Now I'm wondering: she said 3 minutes is the international criteria for diagnosing POTS and OI!

In many POTS patients, they will experience an increase in heart 2 or 3 minutes after standing. But in some patients it can take up to 10 minutes for the increase in heart rate to appear. So if you stop the test too soon, you will miss this increase.

 

[Dechi]

I was diagnosed with Neurally mediated hypotension, which sounds like the same thing. It’s one of the many forms of orthostatic hypotension, just as POTS is.

 

[Hip]

@Dechi, orthostatic intolerance (OI) is the umbrella term, then under that umbrella you have three OI conditions that are commonly found in ME/CFS patients:

POTS — postural orthostatic tachycardia syndrome
NMH — neurally mediated hypotension
OH — orthostatic hypotension