Tilt Table Test

[dm866]

So I just had a tilt table test. I passed out, but they said my heart rate and blood pressure were normal and that I don't have POTS. I have all the symptoms of POTS and normally do have tachycardia when I stand up. Is it possible to have POTS but not have an increase in heart rate or decrease in blood pressure for a tilt table test? The doctors referred me to a psychiatrist, because they don't know why I am passing out, but I know it's a physical issue because it only happens when I stand or sit up for a while. Please help!!

[corina]

I'm so sorry this happened to you. When it just happens like you mentioned while sitting and/or standing you might want to ask the specialist for the details of your test and look at the results. They may have missed something? I mention this as I have heard of that before. Just a thought to try help you!

[MomtoGiuliana]

To add to what Corina said, it sounds like it would be best to be seen by a specialist, such as an EP, who has expertise in dysautonomia who could review your TTT results.

Our physician list may include someone close to you: http://www.dinet.org/index.php/physician-list

POTS is defined as an increase in HR when standing of at least 30 bpm. However, someone could "have" POTS yet not have this symptom every minute of every day. At least I know that was/is the case for me. The condition does wax and wane. Fainting is not necessarily part of POTS. But there is a condition called NCS for example that does cause fainting that is similar to POTS. Some people have both, some have just one or the other. There are of course other causes of fainting as well.

[Macca]

Hi dm866

Sorry you're having a difficult time.

In my first TTT I didn't have a large increase in heart rate, and my blood pressure stayed normal for 5 mins, but then it dropped quickly and I passed out. I was told I had Vasovagal Syncope. This result was despite having frequent episodes of orthostatic tachycardia in the period before the test. In my second TTT I was classic POTS, with rise in heart rate by 40bpm and I didn't pass out. Dysautonomia has a number of sub-types, not just POTS and it might be worth checking the Dinet website for info, for example:

http://www.dinet.org/index.php/information-resources/ncs/ncs-general-information

It would be worth checking the list of docs noted above, as a specialist who understands dysautonomia makes all the difference to getting an accurate diagnosis.

Good luck!

[ks42]

It is definitely possible to have good days where POTS symptoms aren't as easily apparent, while still actually having POTS. My spouse had a near-normal TTT the first time, despite having standing heart rates up into the 200 range a lot of the time before and after the test. It just wasn't every day, so they didn't catch it right away. There are also many other autonomic disorders besides POTS that could cause various symptoms, like fainting.

The other issue is that many docs who aren't specifically POTS or dysautonomia savvy aren't familiar enough with the diagnostic criteria for things like POTS or NCS / Vasovagal Syncope, and will dismiss minor fluctuations in blood pressure as normal, and may not recognize POTS, either. When I was first getting sick, I had some documented increases in my heart rate of over 100bpm, but had something like 3 or 4 major big-name cardiologists tell me that was "normal" and I couldn't possibly have POTS. I also had major orthostatic hypertension - my blood pressures were getting into very dangerous hypertensive crisis / stroke range but they told me that was normal too (it's not). They wanted me to see a psychiatrist. Fortunately, another doctor, who knew POTS quite well, looked at all my vitals and test results, and diagnosed me with POTS (telling me I didn't need psychiatry, I needed a good autonomic specialist!!)!

I would recommend getting a copy of the report from your test, and the raw data, if you can get that too. If it looks like they might have missed something, you might want to take it to an autonomic specialist.

[Terri27]

Hi I’m new here. I’m in a bit of shock. I’ve been in misery for years. 2 years ago they tried to do an angiogram. They couldn’t as they couldn’t get my heart rate down. This was after 3 days of beta blockers. The head radiologist apologised and said there’s something wrong with your body. Finally a few weeks ago they sent me for a tilt table test. On standing my heart rate went from 70 to 130, straight away. It then hovered at around 120 for 30 mins and then within seconds, shot down to 80 then just as quickly it shot back up to 160. I asked to please lay down and it went straight down to 90 when this happened. I felt sick and delirious but was glad something was showing. The specialist informed me it was a normal tilt test. The only thing that happened was a slight rise after 45 mins. 😱 my whole body was shaking. My daughter was present!!!! I don’t know what to do. The dr was on his phone all the time but he didn’t miss it. He was even yelling at the nurse to get the bo cuff off as now my bo was through the roof. I’m stuck. We can’t argue with a hospital. My go knows I can’t stand without my heart rate going up 70. But... help please anyone. Thanks Terri

[Pistol]

Hello Terri27 - Iwhat you describe does not sound like the common reaction to a TTT. Did they give you any medications durng the test? I know that for me I had one TTT during which they gave me nitroglycerin and it first shot my HR up then suddenly dropped and I passed out. No one was particularly worried about it. ---- I know how scary these tests can be. If you do not feel comfortable with the TTT you may ask for a second opinion - even after the TTT they can still review the results, the technician or doctor has to record the response of your BP/HR during the test. --- I am sorry but we cannot give medical opinions or advice on this forum since we are not medical professionals. Please see your doctor - or another one - regarding your concerns. I hope you will be well.  

[corina]

Hi Terry, I'm sorrry you're doctor doesn't seem to be of much help. I agree with Pistol that it might be best to ask for your results and find a new doctor who wants to work with you. Take care!