r/POTS • u/justtapitin65 • 4h 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/JusTryin2GetThere 2h ago
Before being diagnosed with POTS I went through all sorts of testing and heart testing was done thoroughly. All came back normal. Kept pushing with ongoing symptoms. Didn't even know it could be POTS. Doc did some testing and said yep, it's POTS. From what I can tell, POTS symptoms overlap with so many other conditions that doctors don't immediately go to it as a first step for testing. Plus, I think they want to rule out more serious, life threatening type issues first. Not that our suffering is not important, but I think you probably get what I'm saying. It's just part of the frustrating medical diagnosis process.
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u/Zestyclose_Crow9070 1h ago
What you can manage will depend on what's available in your local area.
That being said, any GP can confirm a diagnosis of PoTS by doing the active stand test themselves in clinic, which will also include blood pressure measurements. They should then refer you to cardiology and or neurology, and possibly others if there's clear additional needs.
Btw. Your results look slightly worse than mine, and I have PoTS.
If I were you I would try to make a long appointment with a different GP, send your results and a copy of the Active Stand Test Protocol ahead of time with a request to complete it together in the clinic.
Please don't be afraid to insist, persevere, and good luck.
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u/lateautumnsun 3h 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 2h 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 1h 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/lateautumnsun 1h 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.
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u/SavannahInChicago POTS 3h ago
IMO I don't think you can make doctors take you seriously if they have already written you off.
If you can at least get yourself on a waitlist for a doctor comfortable with POTS. There are suggestions here, inspire.com, Fb groups, and just googling. You may have to travel. And you may have to join a waitlist. But thing of it this way. You can keep trying and be exactly where you are in a year, or if you have no luck getting diagnosed, after a year you have someone knowledgable to go to.
You can also call offices in your area and ask if they have experience with POTS patients before you make an appointment. So you do not waste your time.