Tilt Table Vs Active Standing

[Jeng5158]

Hey everyone! I'm new to the forums and so glad to see a support network of people.

After 8 months of not knowing what's going on, I was tentatively diagnosed with POTS. I've always had dizziness and assumed I just had orthostatic hypotension so when I developed a lot of nausea, I didn't put two and two together that it only happened when standing or when moving around after a large meal, so I had a billion GI tests done that were negative. I think at that point they assumed it was IBS or psychosomatic. I don't remember where I heard about POTS but I saw a description that was exactly how I would describe myself and realized that I don't have just low blood pressure, I actually have a really high orthostatic heart rate. I did standing tests on my own with hitting 130-140 every time, with my feet turning purple. I saw my doctor yesterday, asked about whether POTs could be causing my issues, and he did a quick standing test and my heart rate was 126 after 2 minutes of standing. He now ordered an echocardiogram and a tilt table test with the tentative diagnosis of POTS.

My question is has anyone ever had a false negative tilt table test? It was my understanding that symptoms and change in heart rate is more pronounced with the TTT than with a normal standing test, but then I read a few things where the change was less. I'm just worried about having another negative test and being looked at like I'm crazy, even though my symptoms do fit and I've never not hit the criteria with the standing test at home. If I don't have POTS, obviously that would be awesome.....but I also don't want something to be missed because it's a good day when I have the test.

Does anyone have any thoughts or firsthand experience with different results between the standing test and the tilt table?

Thanks so much!

Also - I tried to search this and couldn't find anything but if a thread has already been done on this just let me know.

[Bigskyfam]

I had an inconclusive test then a test I failed that was done correctly. My cardiologist did the test she had never done one nor the tech. 2 weeks later the experienced EP and his regular tech did mine. I failed within 5 min or so.thr didn't use meds. Monitored testing flat for 45 min, upright tilt... Can't remember degree. 5 min upright. Returned to supine and my heart rate plummeted from 160 to 60.

Make sure the doc and tech are trained. My second one was done at no cost due to the first.

[Jeng5158]

Thanks for your reply! I am worried about getting it done at the local hospital...there's no one who really sees people with dysautonomia so I'm afraid it'll be interpreted wrong. My insurance won't cover it at the academic hospital 20 minutes from me unless it's ordered by a doctor there...and the specialist will only see you if you've already had autonomic testing so it's kind of a catch 22.

I'm just hoping that if I do have POTS, my results are significant enough that it's easy to interpret. At home they usually are, but what if the process of actively standing increases my heart rate and since the tilt table takes that away, it makes my results negative, even though it's not simulating real life?

I know I'm really overthinking this...it's just hard being a young female and being afraid of not being taken seriously.

[SarahA33]

Hi JenG,

Welcome to the forum! I think what your feeling is really common, you mentioned above going through a lot of GI tests. I went through a lot of testing also prior to my tilt table, so I think it's normal for us to expect testing to not lead us to answers despite how symptomatic we may be.

The criteria for POTS is having a HR greater than 120 BPM or an increase of 30 BPM within 10 minutes of standing. You mentioned #'s that exceed that in a 2 minute range, so in my opinion the tilt table test is definitely a good idea. Here is an article that Dr. Grubb wrote, a POTS expert, that explains it from a patient perspective http://circ.ahajournals.org/content/118/3/e61.long

I know how your feeling, it is difficult to not be taken seriously when you aren't feeling well and are trying to find answers. Don't give up!

Sarah

[rubytuesday]

I had two tilt table tests. I did not pass out in either (and up until those had only passed out once in my life). After the first test, my cardiologist ran a 24 hour and then a 30 day event monitor. He diagnosed me with neurocardiogenic syncope (even though it was 'near' syncope). I began various trials of medications/salt/hydration, etc. and none of them seemed to help. A year later, he wanted another TTT but performed by a different cariologist/physiatrist. He said the HR rose and the BP dropped consistent with a positive result even though I did not pass out. He said it could well be that the cardiac lab was not able to create a warm enough environment that best lends itself to passing out (it was cold in there while it is supposed to be very warm).

Don't be worried. I would have had a third or a fourth if it was necessary to help define what was happening to me. My condition progressed to full blown POTS/syncope/orthostatic hypotension/dysautonomia and it took a course of nearly 2 1/2 years and many referrals to other fields of expertise to rule out or to help establish definitive diagnoses. It takes persistence and patience and for me, gratitude to have a wonderful cardiologist who believed me and did not give up on me.

Best of health,

ruby

[Jeng5158]

Thanks everyone, I appreciate it!