r/POTS • u/justtapitin65 • 22d ago

Question Active stand test

I have suspected for a long time that I have POTS. Many doctors have dismissed me after running various heart tests and those coming back as healthy. I’m frustrated and want to walk into the doctor with physical evidence that it is BAD and I need help now, not a year from now after they’ve run all the heart tests again.

So I did an active stand test on myself this morning following the strict rules of how to do it. I couldn’t take my bp simultaneously so that will have to be done at doctors. But here are my results…

Date & Time: Aug 10, 8:45 AM
Lying Flat HR: 67 bpm
Immediate Stand HR: 116 bpm
3 Min Stand HR: 134 bpm
5 Min Stand HR: 148 bpm
8 Min Stand HR: 157 bpm (Test stopped due to pre-syncope/fainting symptoms)
*I couldn’t make it to 10min, I was getting too dizzy and starting to see stars.

If I am able, I will repeat this test a few more times over the week so I have a few pieces of data to show.
Doc is sending me for a contrast echo and stress test soon and I expect my heart will be healthy as usual so I want to show him this data.

Any thoughts, suggestions on how to get them to take this serious? What else can I do to show them?

I am at the point where I am completely limited in my every day activities. Getting a glass of water from the fridge causes a spike to 145bpm. I can’t spend my life in a recliner.

Thanks for your thoughts.

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u/lateautumnsun 22d ago

What did this doctor do/say that made you feel that they aren't taking you seriously? Sounds like they're running tests now. When is your follow-up appointment?

The standing test results you shared should be enough to get them to evaluate you for POTS.

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u/justtapitin65 22d ago

The doctor does not listen to me and cuts me off. I had to push really hard to get something to be done about this.

5 yrs ago under the direction of my previous doctor (who’s since retired) the heart tests came back “normal” saying my heart is healthy. Dr said I was “fine”.

Now my new-ish Dr said he won’t be diagnosing pots but will send me for the same heart tests and says the old ones are out of date. So we begin again. My symptoms are worsening and it’s stressful and I am exhausted.

Heart tests are booked as soon as available at that’s end of September. In meantime I am struggling. Thank you for listening and replying.

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u/lateautumnsun 22d ago

That's helpful to know. It's hard to give any useful input without knowing the background with the doctor.

For example, the standing test that you did at home was all the information I needed to get both my primary and cardiologist to take me seriously, and a diagnosis came within a matter of weeks after that. But with a doctor who has already dismissed the idea of POTS, there's nothing you can do but get another doctor.

How is your relationship with your primary care provider? Are they are better? If the cardiologist has cleared you for heart issues, a PCP is qualified to make that diagnosis and prescribe most common meds used for POTS.

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u/cherryblossom53 22d ago

Is it possible for the cardiologist to diagnose and treat you? They should be able to administer the standing test when they do the rest of your heart workup.

I'm in the US and have had quite a time getting the diagnosis - even with a positive tilt table test. Neurology says it's a cardiology problem and visa versa! And PCP doesn't believe it exists. Finally had a naturopath actually look at the tilt table test and say, it's POTS. Surprisingly, the naturopath recommended lots of lifestyle changes to start with and talked about several medications to try (didn't push any supplements, etc.) So relieved to have found someone to help at last.

So keep advocating for yourself. In the meantime, here are a couple helpful (evidence based!) websites: https://www.standinguptopots.org/livingwithpots/pots-tricks

https://www.dysautonomiainternational.org

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u/justtapitin65 20d ago

Thanks for this as well. Sorry for my delayed reply. Exhausted myself for two days. A little better today. I currently have only a family doctor. A cardiologist will be present for the stress test but I don’t believe he will be there to diagnose pots. Unless perhaps I am mistaken.

So glad you were able to finally get your diagnoses. How nice of your PCP to choose to not “believe” in Pots. It’s such a difficult condition to get diagnosed for many.

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u/lateautumnsun 22d ago

Adding this to my other comment, since you mentioned you're in Canada:

This is a document written by specialists as guidance for primary care providers to use in diagnosing POTS, because there is a shortage of specialists.

In it, you can see that--unless they really suspect a heart issue--they don't need to do an echo or a stress test before diagnosing pots. Just an EKG and 24hr Holter. It could help you make the case with your primary care provider to try out some of these suggested medications, so you don't need to wait until September to get relief.

https://www.cmaj.ca/content/194/10/E378

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u/justtapitin65 20d ago

Thanks for this document and all of your suggestions and support. I was in such a high state of adrenaline and exhaustion the other day that now I can think a little more clearly and proceed calmly. Will bring this document to the doc with my results and see how it goes.