My cardiologist finally agreed to schedule a “tilt table” test to check for POTS, which I should be thrilled about, but honestly I’m terrified. Terrified that the test will be negative, and I’ll be right back at square 1 after years and years of fighting for an answer. I’m curious if anyone on here has gotten a negative tilt table, and what affect that had on their diagnosis/life?
Postural Orthostatic Tachycardia Syndrome (POTS)
I've had 3 done. First 2 "technically" came back negative but I was just on the cusp. Still waiting on the results for the 3rd. After the results of the TFlow test and with my other symptoms, my doctor has been confident enough to diagnose me. But, honestly, even if you come back with a strong negative, that doesn't mean you don't have Dysautonomia. It just means you don't have POTS. There's multiple Dysautonomia conditions that act similarly, POTS is just the most well known one. Just stay calm. Take the test as best you can. It's not at all painful and shouldn't be too uncomfortable. And know that even a negative result doesn't mean the end to answers. There's still more avenues to go down. 💙
thank you! i haven’t heard of many other dysautonomia conditions besides POTS so i’ll have to look into them, but the reassurance is much appreciated :)
I felt the same way, wondering if I would “qualify” for a diagnosis in a way. Regardless of the result of the test, you can still treat yourself like you have POTS if those things help you. Before I knew for sure, I still did things like drinking liquid IV, adding sodium to my diet and supplements, using compression stockings, keeping from being over-heated, and sitting instead of standing when possible. You can still do those things no matter what happens.
But I am very guilty of “gate-keeping” myself from certain diagnoses out of fear that I don’t have it bad enough to qualify. Believe yourself and believe what your body is telling you.
One last thing, you can have a negative tilt table test and still be diagnosed with POTS. There are other things a cardiologist can look for.
Best of luck!
yes! i use compression socks and liquid IV almost everyday and will continue to use them regardless of the outcome, but after 8-9 years of no answers and being gaslit by doctors, I’m honestly just looking for some peace of mind that what I feel is real. thank you for the encouragement and reassurance :)
I totally understand that. It’s so nice just to have an answer and a name for what you’re dealing with. Really hoping that’s what you get! And even if not, your experience and self-diagnosis is valid too. Drs who gaslight are the worst.
My doctor told me that doing the tilt table wouldn't be worth it as she knows based on simpler tests I have pots. She is medicating me and says that another test is just an added expense that is unnecessary. I am in no way discouraging you from doing it if it's right for you, I just figured I'd give you my opinion.
The tilt table isn't the end all be all is my point I guess. It can be positive without pots and negative with pots
I totally get you in that but rejection is only redirecting you it could be troubling but an answer will show up and as long as you are sleeping right eating right and mentally stable you can be sure things should improve overtime
Diagnosing pots is so tricky because of the fact we can have negative tilt tables & still have the condition 😥 I know that doesn't relieve your stress or worry.... but just know you are not alone in that worry. I feel you & im here if you need to vent 💕
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