Negative Tilt Table Test

[valliali]

i am wondering if anyone was diagnosed with pots but had a negative tilt table test??

i did, until the end, when i had an episode of sinus tachycardia after the isuprel infusion.

when i took the TTT, i had been experiencing symptoms for about eight months. however, a racing heart or dropping blood pressure was not one of them. hence, a negative TTT. but i was diagnosed with POTS from that heart issue.

i think if i took the TTT today, then i would fail for having orthostatic tachycardia when upright. but i am wondering if in POTS, the tachycardia is one of the first symptoms to develop, or can it come later?

i am seeking a cause of my dysautonomia, and want to be sure to rule everything out before accepting the pots diagnosis. i am curious as to why the orthostatic tachycardia is just now becoming a symptom, a year and three months into being sick. i have been really debilitated by so many other symptoms, but the one that makes POTS what it is i am just now experiencing. is this odd? did any of you have negative TTTs at first?

[Ernie]

Hi,

All my TTTs are positive.

[pat57]

Mine too. 4 of them, but NCS not POTS.

[MelissaCrystal]

Keep in mind that some doctors have different opinions about the TTT.

After the drug, my BP went down to 40 over 20. The cardiologist said that was normal, and my neurologist said it was definitely an exaggerated response due to dysautonomia. She was surprised that the cardiologist said I was fine after that response...so that just goes to show you how different each doctor can be depending on their opinions and experiences.

[valliali]

My heart rate and blood pressure did not change at all!!! I was told that I have pots because it is the most common. But I cant help but shake that I had a tilt table test that was negative for the typical pots symptoms. I only had the odd heart response -sinus tachycardia at 200bpm immediately after the isuprel wore off - I have similar responses after my heart rate has been at a sustained level for awhile, so something with it starting to slow down causes it to kick back up. but this does not necessarily mean pots, no??

Is it odd that I am just now, over a year later, developing the more typical POTS symptoms? The fast heart rate upon standing? An increase in blood pressure when standing? Should these have come first in primary POTS?

The reason I am asking is because I suspect I have something else going on but as long as I have a POTS diagnosis, my doctors write off the need for any other test or any other symptom by saying, "well, it's POTS."

I am suspicious that the POTS symptoms are just now starting, and that I had a negative TTT for it, because it leads me to wonder if I don't have something underlying that is progressively damaging my ans... like lyme's...

Thanks for the feedback guys!!

[MelissaCrystal]

Point is though---another doctor might say you were positive because you had an exaggerated heart rate after the drugs. My heart rate didn't go that high, and they still commented on it going up as a definite sign of dysautonomia because I guess having your veins dilate isn't supposed to make your heart labor. You might have just mild dysautonomia, like some of my doctors tell me (then others say I have stage 3, so whatever). Maybe you should get a second opinion on the test results. I wouldn't throw the test out the window just because one doctor says it is negative. I made that mistake before and wasted a lot of time because of it.

The reason the doctors are saying it's much more likely to be POTS is because they're right. Even though they are right about that fact, they may be wrong when it comes to interpreting the test results. TTT's are tricky, because anyone can react badly to the drugs. But if the way you act on the drugs is similar to your symptoms in the heat or during exercise, then doesn't that tell you that you are on to something? Think about that, and don't rule out anything completely, because TTT's aren't greatly accurate because of people's weird reactions to the drugs. I hope I made sense, and I really hope you figure out what exactly is causing your problems! I'm in the same boat as you ;p

[valliali]

That makes total sense. There is no doubt I have some kind of autonomic dysfunction going on. I am just afraid that with a diagnosis, now everything is being clumped into that box. Doctors don't want to acknowledge other symptoms because they're all POTS. But what if I don't actually have POTS? I have some really incredibly debilitating symptoms, so I know my level of dysautonomia is not really mild. Which is why I am confused as to why I have been diagnosed with POTS when there are clearly other more severe things going on besides the classic POTS symptom - the heart rate increase or blood pressure drop upon standing. My heart issues keep getting worse and worse, and doctors always tell me, "it's just POTS!" But that drives me crazy because I am not exactly understanding why I have been diagnosed with POTS. I have read many many publications and studies on POTS, and everytime I do, I notice that all the patients in the study had a positive TTT for increase in heart rate upon standing. My cardio cannot explain to me at all why my heart started racing after coming down from the isuprel infusion, which is fine, but then I feel like he should probably not have been diagnosing me either.

Thanks for your insight. I do completely agree. Still very confused though.

[firewatcher]

My doc keeps telling me that we are on the cusp of knowledge when it comes to the information that we have on all this. POTS is still such a "new" official diagnosis that they really don't know all the ins and outs about it and how it impacts the rest of the systems. He keeps telling me to read and wait and as the answers emerge a clearer understanding and better treatment will follow. Sorry, that does not help much.

[MelissaCrystal]

That makes total sense. There is no doubt I have some kind of autonomic dysfunction going on. I am just afraid that with a diagnosis, now everything is being clumped into that box. Doctors don't want to acknowledge other symptoms because they're all POTS. But what if I don't actually have POTS? I have some really incredibly debilitating symptoms, so I know my level of dysautonomia is not really mild. Which is why I am confused as to why I have been diagnosed with POTS when there are clearly other more severe things going on besides the classic POTS symptom - the heart rate increase or blood pressure drop upon standing. My heart issues keep getting worse and worse, and doctors always tell me, "it's just POTS!" But that drives me crazy because I am not exactly understanding why I have been diagnosed with POTS. I have read many many publications and studies on POTS, and everytime I do, I notice that all the patients in the study had a positive TTT for increase in heart rate upon standing. My cardio cannot explain to me at all why my heart started racing after coming down from the isuprel infusion, which is fine, but then I feel like he should probably not have been diagnosing me either.

Thanks for your insight. I do completely agree. Still very confused though.

Yeah, many many MANY doctors don't realize how many things can cause POTS. I'm not satisfied at all with someone saying "Oh, you just have dysautonomia, and we can try all kinds of different treatments." I want to find out what's -causing- it first rather than masking the problem, so I understand exactly how you feel. What I'm doing, is going to a variety of different specialists in other fields, and looking for signs of EDS, or other things that sort of fit me that -could- cause my POTS. Unfortunately you may have to do a lot of the research work yourself, and bring your findings to the appropriate doctors. It's kind of a big homework job, but I have not been able to find a doctor that is willing to take on that kind of work themselves. The only other option would be to go to one of the doctors listed on the potsplace.com website. They have a lot more experience with it and may know who to refer you to to test for many different kinds of diseases. Personally, I live in California and have gotten tired of the bay area doctors sending me around when they get stumped, so I'm going to travel to LA to the UCLA center for POTS and dysautonomias, and I think they will be much more capable.

To me, POTS is a list of symptoms period, and not a true diagnosis of anything. A doctor might tell you they are diagnosing you with POTS, but that doesn't really mean anything, and if they think that's the end of the line, I think they're inexperienced.

[mkoven]

I've been told that ttt's are problematic, because they are not standardized. I had my one and only ttt at Cleveland, that was positive for pots and hypotension, without the injection, and on my ans meds (midodrine/florinef). i'm glad it was done there. Where I live, they would have declared it negative unless I actually lost consciousness, which I didn't. So, take ttt's with a grain of salt. Mine said that my tachycardia was worse than my hypotension, but in real life, my hypotension is worse than my tachycardia. I'm glad I had the test, so docs would stop pestering me to get it. but I don't want it again. I also think my symptoms are variable day by day, and that a ttt will just show you on one day.

My local cardio saw the results and declared that my pots is worse than nmh, because of the ttt. but then in his office, I had an instant 30 point bp drop when standing. He initially said i couldn't have pots and nmh---but there it was.

[Pots_ehlersPatient]

About 30% of patients with daily pots symptoms have a negative tilt table test. There is more on this subject on pubmed, but the gist is: (quote)

Chronic day-to-day symptoms of orthostatic intolerance are the most notable features of postural orthostatic tachycardia syndrome (POTS). However, we have encountered patients with such symptoms and excessive tachycardia but with no symptoms during the tilt-table test (TTT)

Significant patients with POTS did not present orthostatic symptoms during the TTT despite having chronic daily symptoms. This finding may be important for establishing definitive diagnostic criteria for POTS.

POTS diagnosis may be difficult in clinical practice because interpretation of the phrase "orthostasis associated with symptoms of orthostatic intolerance" varies in the literature.

[RecipeForDisaster]

My feeling is that the stress and discomfort of the test increased my baseline BP (clearly documented - about 30 points higher diastolic than at home) so I don't come up positive when I'm there. I get blacked out vision and extreme lightheartedness when I stand, but not during a TTT. My BP doesn't dip low enough. I wish I could document anything but I'm very different in my natural environment

[bombsh3ll]

Whilst helpful for picking apart what haemodynamic abnormalities a patient may have & potentially guiding treatment, as well as sometimes for disability purposes, a TTT can sometimes be unhelpful & frustrating if it presents values/patterns within the normal range on that particular day.

Tilt-reproducable POTS can vary depending on a lot of things such as hydration, time of day, menstrual cycle, medication etc. 

So a person can have POTS & not show up on the TTT, alternatively they can have orthostatic intolerance with no specific HR/BP deviations from the norm but nevertheless be profoundly unwell with severe symptoms, sometimes more so than someone with a higher HR increase, as what matters is blood flow to the brain as opposed to a HR number.

Unless cardiac output is measured/estimated during the test, a critically low cardiac output, if compensated for with intense sympathetic activity creating a normal (or even increased) BP, will be missed. Equally unless transcranial doppler or other method of assessing cerebral blood flow is employed, cerebral hypoperfusion is also invisible unless the person loses consciousness. 

There is far more to orthostatic cerebral hypoperfusion & circulatory failure than superficial measurement of HR and BP, to which many providers often limit testing.

Another potential scenario depending on where you are tested, is the person reading the data has not heard of POTS and sees sinus rhythm with no drop in BP and declares the test "normal" despite marked tachycardia being present, because they only know to look for postural hypotension or arrhythmias. This happened to me on my first TTT (with a HR in the 130s and BP 170/100). As with any medical test is really important to ask for a copy of your actual data than just the conclusion of the person interpreting it. 

B xxx