POTS - diagnosis and reliable information to show to doctor

[Countrygirl]

Here is a video on POTS that I am listening to at the moment which is nearly two hours long, so is quite comprehensive.

For years, .....decades............ I had what I am sure was POTS. Sometimes my pulse pressure was so low at about 10 that I couldn't even raise my head without blacking out and, of course, couldn't function for more than a few minutes on my feet.

However, starting about five years ago, all changed. Instead of my BP falling so low I couldn't function, it shoots up to dangerous levels and very rapidly and my brain doesn't seem to be able to adapt to the speed of change, giving me stroke like symptoms. Individual episodes have left me with permanent vestibular damage, persistent tinnitus etc. I believe this is still POTS, but my doctor said this doesn't happen in POTS, but from what I have read one can have very high BP too. The difference though is that the pulse pressure instead of falling to about ten is more like a hundred. If I am sitting or lying, my BP is acceptable, but when standing it can rise to about 220/126.

Have any other long-term patients experienced this change, please?

Didn't Dr Bell find that his long-term patients increased their functioning because their POTS symptoms changed and thus they could become more active? I am relying on memory here................which is very unreliable.

C.G.

 

[snowathlete]

This is a very handy thread everyone; thanks!
I am wondering about POTS because I have some heart issues, feels like it's beating HARD - I actually was at the hospital today having a chest xray. I also saw an endocrinologist - she took my blood pressure which she said was a bit low (can't remember what) and it beeped to warn that my heart rate was high - 119 resting. She said it wasn't normal, even taking deconditioning into account.
I told her about some other symptoms including lightheadedness, vision going on standing. She measured my bp sitting then standing. Same. Typically I didn't get the symptoms this time. Is it when I stand too fast, or what? I don't know.
She's running a bunch of blood and urine tests to look at my cortisol and stuff but expect it will come back borderline normal. Heart xray too.
At which point I wonder if it's worth trying to see Newton (I'm in the UK). Seems there is little point in seeing someone random. I'm nowhere near Newcastle - can you opt to see her still if you're out of area?

 

[Sushi]

This is a very handy thread everyone; thanks!
I am wondering about POTS because I have some heart issues, feels like it's beating HARD - I actually was at the hospital today having a chest xray. I also saw an endocrinologist - she took my blood pressure which she said was a bit low (can't remember what) and it beeped to warn that my heart rate was high - 119 resting. She said it wasn't normal, even taking deconditioning into account.
I told her about some other symptoms including lightheadedness, vision going on standing. She measured my bp sitting then standing. Same. Typically I didn't get the symptoms this time. Is it when I stand too fast, or what? I don't know.
She's running a bunch of blood and urine tests to look at my cortisol and stuff but expect it will come back borderline normal. Heart xray too.
At which point I wonder if it's worth trying to see Newton (I'm in the UK). Seems there is little point in seeing someone random. I'm nowhere near Newcastle - can you opt to see her still if you're out of area?

Do you have a BP machine at home? A heart rate monitor? For some types of dysautonomia, the BP doesn't change immediately upon standing, but takes much longer. Mine will drop a bit at 1 - 3 minutes but the more extreme changes happen after 20 some minutes.

The HR can also start to do weird things after standing for a while.

Sushi

 

[maryb]

@snowathlete
yes mine does the same as Sushii - its always fine sitting/standing when taken at the docs though. Its hard when you feel so ill and all the test are 'fine'

 

[snowathlete]

@Sushi, yes I do have a blood pressure monitor. Just took it out and took it - 123/75 - that's normal right?
And heart rate was 101 which is similar to the last time i measured it at home about 6 months ago.
Just had a bath, don't know if that might impact the results. I'll check again tomorrow.

One possible factor was that I had to walk from one dept to another, which for me was a long way. Maybe that lowered my pressure but upped my pulse?

I'll have to try what you and @maryb suggest about standing for a fair time as well, and see what happens.

 

[Sushi]

@Sushi, yes I do have a blood pressure monitor. Just took it out and took it - 123/75 - that's normal right?
And heart rate was 101 which is similar to the last time i measured it at home about 6 months ago.
Just had a bath, don't know if that might impact the results. I'll check again tomorrow.

One possible factor was that I had to walk from one dept to another, which for me was a long way. Maybe that lowered my pressure but upped my pulse?

I'll have to try what you and @maryb suggest about standing for a fair time as well, and see what happens.

On a tilt table test you are at 80 degrees (never understood that magic number ) So I'd guess you could lean against a wall and watch TV and take your BP every couple of minutes. Your arm should be supported at heart level, palm up (so they say). Aren't our lives creative and fun!

Sushi

 

[Vegas]

Does anyone have any knowledge about the current and most widely accepted diagnostic criteria for P.O.T.S.? While the tachycardia component is well-established, what about the hypotension criterion that is specified below? Is this component generally necessary to meet the diagnosis. This definition comes from a P.O.T.S. specialist at Vanderbilt as referenced in the link below.

Also, can anyone tell me how common it is to receive an implantable cath to get regular venous infusions?


"POTS is defined as the presence of chronic symptoms of orthostatic intolerance (≥6 months) accompanied by an increased heart rate (HR) ≥30 bpm within 10 minutes of assuming an upright posture (Figure 1) and in the absence of orthostatic hypotension (blood pressure [BP] fall >20/10 mmHg).1,2"

http://crm.cardiosource.org/Learn-from-the-Experts/2013/02/POTS-Diagnosis-and-Treatment.aspx

 

[Ruthie24]

On a tilt table test you are at 80 degrees (never understood that magic number )
Sushi

Having worked with tilt tables for therapeutic uses, if they put you up to 90 degrees, you feel like you're leaning forward beyond upright and you're going to fall on your face. As noted above tho, some places only take you up as far as 60 degrees.

@Vegas- For a POTS diagnosis you should have the tachycardia without hypotension. It is a normal compensation in the body to have tachycardia with hypotension so doesn't really qualify as odd. POTS is unique because of the tachycardia without the normal accompanying hypotension.

However, a lot of people have both POTS and NMH/NCS where you get the elevated HR while maintaining the BP for awhile but then the BP drops. You can have both of those conditions in the same patient and a lot of us do.

From what my POTS neuro says, the current diagnostic criteria require the HR change as noted above and accompanying symptoms that interfere with daily life.

 

[Vegas]

Thank you that is very helpful.

If you or others could also comment about the reasonableness of more informally taking vital signs that reflect a change from a seated or supine position to a standing posture. Is this commonly done, and used for diagnostic purposes or to monitor the condition. In other words, are the POTS patients commonly subjected to this postural change so their HR and BP response can be compared. Obviously this is not as reliable as a tilt table test, and I understand it can take quite some time for the tachycardia to manifest, but is this something that is used in clinical practice?

 

[Sushi]

Thank you that is very helpful.

If you or others could also comment about the reasonableness of more informally taking vital signs that reflect a change from a seated or supine position to a standing posture. Is this commonly done, and used for diagnostic purposes or to monitor the condition. In other words, are the POTS patients commonly subjected to this postural change so their HR and BP response can be compared. Obviously this is not as reliable as a tilt table test, and I understand it can take quite some time for the tachycardia to manifest, but is this something that is used in clinical practice?

I used to see an autonomic specialist. He gave me a tilt table test which I failed somewhat spectacularly but in every office visit did the "poor man's TTT" to check on how I was responding to medications. He also asked me to do this at home and show him the results.

I had a BP monitor with memory and time stamps so I would just bring it to office visits and he could scroll through it. So yes, I think it is both helpful and is done in clinical practice by clued-in docs.

Sushi

 

[Ruthie24]

@Vegas- I'm trying to remember the study from several years ago that said the poorman's TTT was more reliable and had fewer false positives for diagnosing POTS than an actual TTT has. However, in most of the big ANS clinics in the US that I'm aware of they still seem to be using the formal TTT as the gold standard for diagnosis.

 

[Vegas]

I used to see an autonomic specialist. He gave me a tilt table test which I failed somewhat spectacularly but in every office visit did the "poor man's TTT" to check on how I was responding to medications. He also asked me to do this at home and show him the results.

I had a BP monitor with memory and time stamps so I would just bring it to office visits and he could scroll through it. So yes, I think it is both helpful and is done in clinical practice by clued-in docs.

Sushi

I didn't think about doing a journal, that is a good idea. Thanks.

@Vegas- I'm trying to remember the study from several years ago that said the poorman's TTT was more reliable and had fewer false positives for diagnosing POTS than an actual TTT has. However, in most of the big ANS clinics in the US that I'm aware of they still seem to be using the formal TTT as the gold standard for diagnosis.

That was my speculation as well, and I think it stands to reason that a singular observation may be less reliable than multiple "informal" recordings even with the controls afforded by the TTT, because the threshold controlling the provocation of the tachycardia is variable, from day to day. In this instance, the patient was never subjected to the TTT, so the diagnosis has been challenged.

 

[taniaaust1]

I've attached a PDF to this message. It's the document from Johns Hopkins with patient information on Orthostatic Intolerance.

oh wow what a great PDF file.. too long for me to be able to read it all (its better then the ones Ive seen there in the past) but Ive copied it off for my doctors. Thanks.

I suggest all with POTS or NMH to check that file out.

 

[ahimsa]

oh wow what a great PDF file.. too long for me to be able to read it all (its better then the ones Ive seen there in the past) but Ive copied it off for my doctors. Thanks.

I suggest all with POTS or NMH to check that file out.

@taniaaust1 - so glad you find it helpful!

I was skimming posts on some different threads and saw you were in the hospital recently. I hope you're feeling a bit better.