False negative on tilt table test?

[Ocean]

I've been using my heart rate monitor to keep an eye on my hr over the course of regular activity and doing mini versions of the "poor man's tilt table" test. I noticed that there were a few occasions when standing up did not produce a 30 point increase in hr. Usually it does and today I have not been feeling well and felt my heart racing and I noticed a 60 point increase on standing when I measured it.

I was a little concerned about going in for the TT test and what if it's one of those days when I don't have a 30 point increase? I think that it rose 60 points in less than a minute is probably a good sign I have POTS, and most other times I've measured it's rose 30 points right away, but I'd like my official test to reflect this too. Does anyone know if it's possible to have "good days" with POTS to the point that it may not show up on a TT test?

I have also been very lightheaded all day, I don't know if it's related. I'm not sure what set off my symptoms worsening today. All I can think that is different is PMS symptoms kicked in today, so maybe that's it. Also, my temperature is up more than normal at 100.2, I'm not sure if that could in some way relate.

 

[adreno]

The severity of my POTS fluctuates, so I have times when I don't fulfill the criteria for a diagnosis. I've never had a TT test, though.

The supplements I take influence POTS in a major way. For instance, Q10 increases tachycardia, while potassium decreases it.

 

[SickOfSickness]

I think I heard of people getting 2 or 3 TTs, to get diagnosed by a good clinician who was willing to redo. But I have brain fog so I'm not sure.

 

[Sallysblooms]

TTT is not perfect at all. Everyday is different with Dysautonomia. Yes, some people have to have several tests. When I had my testing, I was too ill for the TTT. My POTS had started and I could not go through it. We did other tests.

 

[Sushi]

I was a little concerned about going in for the TT test and what if it's one of those days when I don't have a 30 point increase?...

Hi Ocean,

If they do the test in the way to bring out autonomic dysfunction, you are much more likely to "pass". You should be asked to fast on water and food from midnight (if it is done in the morning) and this itself makes you dehydrated and in a worse condition.

Also, they shouldn't let you move at all--even wiggle your toes--and this has its effect too. Talk to your doctor beforehand to find out exactly how they are going to do the test and if it is more geared to heart patients or patients with dysautonomia, and if it is not set up to reveal dysautonomia, show him/her some literature about how it should be done.

Best wishes,
Sushi

 

[Sparrow]

I've worried about this kind of thing too. ...I am hesitant to get any tests done on a "good" day. But also worry about the negative effects and risk of intentionally crashing myself just so the test will show how bad things can be. I think it's a difficult part of the lack of knowledge out there about our condition. Unfortunately very few doctors seem to understand enough to know or care that we can fluctuate greatly.

Which isn't any help, I know. ...But I definitely sympathize. I am constantly on the fence these days about whether to get any test that will go through my doctor, in case it happens to come back normal and gives my disability insurance fodder to claim that I'm well.

 

[Ocean]

Thanks everyone. I really don't want to have to repeat the test. I wish I lived close to a clinic where they do other autonomic testing so if the TTT doesn't show much, they could still have other tests to rely on. It seems there are really not many labs like that throughout the country.

Thanks Sushi. I'll try to make myself as dehydrated and uncomfortable as possible (Kidding, somewhat.) So people other than those with dysautonomia get the TTT done? Are there more things they check for besides NMH and POTS? It's through the cardiology department so I'm guessing they are more heart oriented than neurology.

Sparrow, yeah I worry too. I can see getting a negative test and the doctor saying there's no point in repeating it. I also don't want to repeat it anyway, especially since this test is said to take a lot out of you. I don't know if I should maybe see the cardiologist first and discuss my concerns then do the test depending on what the doctor says. The doctor who ordered it isn't familiar with the test and just ordered it based on my asking for it. So maybe I should take that route.

I also noticed my hr skyrockets when I stand when it's hot out so I'm not looking forward to summer. No wonder fall and winter have been so much better for me than summer since I got sick.

 

[taniaaust1]

That happened to me. I finally found someone who specialised in autonomic issues and POTS and she did a poor mans test on me but it just didnt show that day. (much of the time mine will show with that.. the POTS in my case, my heart can have an increase of up of 67 beats per minute when I stand.. at times thou it wont increase of even 30 thou 80% of the time it does on a quick poor mans testing).

What I didnt know at the time is the fact I went and drank over 3 litres of water in the hour before the appointment, would of been what stopped mine from showing up. No one ever had told me that the amount one drinks before can affect the test. Ive since read something on having this test at one of the hospitals and it says not to drink for 4 hrs (i think it was) before the test.

I guess those places who do the gold standard of tilt table testing, in which they also inject something into us, to test the autonomic system while doing the test, would tend to make sure the abnormality shows up the day of the test.

Im fortunate that the ME/CFS specialist I see now, has just believed that I have POTS, based on what I've told him my body does when I stand... even thou I'd love to be sent for a tilt table test, so I could prove it to the bad doctors who didnt believe me when I said I was having collapses.

 

[Sushi]

Thanks Sushi. I'll try to make myself as dehydrated and uncomfortable as possible (Kidding, somewhat.) So people other than those with dysautonomia get the TTT done? Are there more things they check for besides NMH and POTS? It's through the cardiology department so I'm guessing they are more heart oriented than neurology.

Do talk to the doctor. And yes, a good TTT for autonomic dysfunction will look for more than simple diagnoses of NMH or POTS. Things like the balance between the parasympathetic nervous system and the sympathetic and whether each is doing "its job" or trying to compete with the other and overdriving itself. And other things.

In my case they were competing and both were working too hard. It is more the doctor ordering the test, than the test site. The doctor can ask for the elements of the test that he/she wants, and it is easy to incorporate other parts of autonomic testing into the TTT--no special equipment the a hospital wouldn't have stashed away somewhere. Like for instance a tape recorder, the stuff for a grip test and one to measure the force you can generate to blow air into a device.

The tape recorder is for this: I was asked to read a paragraph and it was recorded. Then they played it back to me while I tried to read the paragraph out loud again, but they started playing the recording first so it was out of phase with what I was trying to read. All the time they were measuring electrocardiogram, pulse and BP. This was a significant test.

You may have to educate your doctor!

Best wishes,
Sushi

 

[Ocean]

Do talk to the doctor. And yes, a good TTT for autonomic dysfunction will look for more than simple diagnoses of NMH or POTS. Things like the balance between the parasympathetic nervous system and the sympathetic and whether each is doing "its job" or trying to compete with the other and overdriving itself. And other things.

In my case they were competing and both were working too hard. It is more the doctor ordering the test, than the test site. The doctor can ask for the elements of the test that he/she wants, and it is easy to incorporate other parts of autonomic testing into the TTT--no special equipment the a hospital wouldn't have stashed away somewhere. Like for instance a tape recorder, the stuff for a grip test and one to measure the force you can generate to blow air into a device.

The tape recorder is for this: I was asked to read a paragraph and it was recorded. Then they played it back to me while I tried to read the paragraph out loud again, but they started playing the recording first so it was out of phase with what I was trying to read. All the time they were measuring electrocardiogram, pulse and BP. This was a significant test.

You may have to educate your doctor!

Best wishes,
Sushi

My understanding was only certain places or docs specialize in autonomic dysfunction and beyond that most places and docs just do/order the basic TTT? Isn't that why people travel to places like Mayo and Vanderbilt to get specialized autonomic testing?

 

[Sushi]

My understanding was only certain places or docs specialize in autonomic dysfunction and beyond that most places and docs just do/order the basic TTT? Isn't that why people travel to places like Mayo and Vanderbilt to get specialized autonomic testing?

Any doc who is educated in TTT can order the elements he thinks are important. But it is true that generally only autonomic specialists are going to know what to ask for. But you can educate your doc -- providing he/she is educable! They can ask an autonomic specialist at Vandy or somewhere else how to do the test.

Best,
Sushi

 

[ahimsa]

Do talk to the doctor. And yes, a good TTT for autonomic dysfunction will look for more than simple diagnoses of NMH or POTS. Things like the balance between the parasympathetic nervous system and the sympathetic and whether each is doing "its job" or trying to compete with the other and overdriving itself.
...

Sushi, thanks for posting all those details. I never had any of those other tests done. I'm not sure whether these things have graduated from "research" to "clinical" since I had my tilt table test (my first one was in Jan. 1995) or whether I just never saw a doctor who knew enough about autonomic dysfunction to ask for these tests.

I was another one of those patients who had to ask the doctor for a tilt table test instead of the doctor observing my symptoms and thinking that it might be NMH. I got some early information about the Johns Hopkins research study (a friend of mine was in the study so I knew about it before results were released) and that's what prompted me to ask my own doctor for a tilt table test.

 

[Hell...Hath...No...Fury..]

Thanks to another member on here, i've asked my doctor to refer me to a Falls and Syncope Unit nearby for a TTT. She found it amusing that all of these centres were for old people. I was wondering what is the chance of being tested correctly for what I need? My doc looked a bit confused when I mentioned POTS until I showed her my printed results from home testing showing the elevation and mentioned the word syncope which seemed to make the penny drop. I'm not sure what tests old people have generally and if those are the general tests i'll be given.
I'm so used to having referals to places to have something specific done, only to turn up and go home empty handed because they won't do 'that specific test' as i'm too young therefore it doesn't apply to me or they don't see it as important enough. I guess I'll just have to wait and see but there are three hospitals in my area with tilt tables so I guess I could visit them all if need be lol.
No doubt all I'll wind up with is 'Patient has developed an unhealthy obsession with riding on tilt tables; must get out more and get a life.'

 

[Valentijn]

No doubt all I'll wind up with is 'Patient has developed an unhealthy obsession with riding on tilt tables; must get out more and get a life.'

Eh, we have to get our thrills somehow Do you think they'll let you wear spurs and a cowboy hat, and shout "yee-hah" while tilting?

 

[Hell...Hath...No...Fury..]

Now there's an idea! I'll get my hat ready and maybe a lasoo to throw at any hunky doctors that need taming/training

 

[Sushi]

Now there's an idea! I'll get my hat ready and maybe a lasoo to throw at any hunky doctors that need taming/training

Just make sure they "keep you up" for at least 30 minutes (provided you last that long!

Sometimes it takes that long for whacky symptoms to manifest.

Best,
Sushi

 

[Hell...Hath...No...Fury..]

Yeah i know, done numerous home tests :-(

 

[soxfan]

I am having my test done June 20th. Then afterwards I am being fitted with a Holter monitor to wear for 24 hours. They wanted me to wear it to work since that is when I have the most difficulties.
I am not suppose to eat or drink 4 hours before the test which is at noon. Even if the test doesn't show anything I know I have a problem going on when I have to stand at work for 6 or 7 hours....

 

[Hell...Hath...No...Fury..]

Best of luck with the test (if thats the corect thing to say lol) let us know how you get on.

 

[Valentijn]

I 'failed' my TTT this morning - that is, no abnormalities showed up, even though I was symptomatic with regards to light-headedness and general crappy-feelingness. I even started panting after getting off of it. But my pulse pressure stayed pretty steady at 50 (140/90ish).

No idea why. My doctor in Seattle measured my pulse pressure around 30 after standing up a few minutes. So you'd think after 20 minutes on the tilt table there'd be -something- odd! I know it's a short test for NMH, but since I was having symptoms, I'd expect to see something.

On the plus side, the syncope specialist wants to refer me to another doctor at the Academic Medical Center in Amsterdam who likes to look into seemingly inexplicable symptoms. I'm hoping that's not code for "medically unexplained symptoms", which is usually code for "psychosomatic" And my GP thinks an Endocrinologist at another academic hospital might be useful, given my odd norepinephrine levels and good reaction to an NRI regarding light-headedness and other OI symptoms.