Passed The Tilt Table Test, But Lots Of Symptoms

[bkweavers]

Hi everyone,

I have a friend who recently went to a cardiologist for symptoms that have been going on since childhood. She just always had lived with it but recently, her symptoms had worsened so she decided to finally get it checked out. After talking with him, he really was convinced that she has POTS. She had a tilt table test done and due to the fact that her blood pressure didn't fluctuate enough, he now says she doesn't have POTS. My daughter has POTS and she never had large fluctuations of bp either.

My question is: Is there anyone on here who passed the tilt table test but went on to find out that they did have POTS or dysautonomia?

My friend's doctor was very surprised by the results as he was very positive that it was POTS.

Thank you!

Brenda

[statesof]

POTS is typically diagnosed from the heart rate increase, not blood pressure. My vitals from a tilt table have pretty normal blood pressure readings but I have the +35 points heart rate increase that is typical of POTS. From my own personal experience and hearing from others on this board, your own tilt table test is not always indicative of how bad your symptoms are. My symptoms are much worse, and much more debilitating that my vitals would ever show; one of the neurologists I went to basically explained that since POTS is still a bit of a mystery and medical science is only advanced as it is, they don't have the most accurate way of explaining or proving our symptoms. For example constriction of arteries/ blood vessels seems to not respond properly in some POTS patients, but they don't have any tests for that. I think you really need to go to a doctor who knows POTS and they make the diagnosis based on the tilt table test, as well as a full patient history.

[ks42]

Statesof is right - POTS itself is actually diagnosed strictly based on heart rate. If your heart rate increases at least 30 beats per minute when tilted upright, OR if it exceeds 120, then you have POTS. Your blood pressure could stay perfectly stable the entire time.

It's very true that blood pressure fluctuations are common in dysautonomia, so very often patients with POTS will also have issues with blood pressure. A large drop in blood pressure during a tilt typically indicates orthostatic hypotension, which is different from POTS, although they commonly occur together.

Unfortunately, it is a common misconception among doctors (even cardiologists, particularly those who don't see a lot of POTS patients) that POTS is based on blood pressure, or requires some sort of blood pressure fluctuation. Perhaps your friend can request her written tilt table results, and see what her heart rate was doing during the test?

[bkweavers]

Thanks to both of you! You pretty much confirmed everything I was thinking but because my daughter had both blood pressure and heart rate changes during her tilt table, I was a little uncertain. I'm also concerned that the doctor she has doesn't have a lot of experience with POTS, even though he claims to know about it. I had already told her from our experience, that she might need to seek out a doctor who has lots of experience with autonomic disorders and not just one who knows a little something about it.

I'm really hoping she will take my advice and seek how a better doctor.

Thanks again,

Brenda

[Katybug]

Brenda,

Your friend should ask for a copy of the raw data, in addition to the report, from the ttt. She can then give the raw data to another physician who is more familiar with dysautonomia for an interpretation.

I had to do it and the second doctor didn't hesitate to dx POTS. My HR went from 72 resting to 145 upright and stayed there the entire 45 minutes. I have no idea how the first doc interpreted that as anything but POTS but he told me to increase my salt and fluid intake on my way out of the test and then wrote a report saying my results were "normal".

[stellaluna]

I just went to the hospital where I had my "positive" TTT. I asked for my results and specifically also asked for copy of the raw data. (I don' think I got what I was asking for.) The person helping me showed me what was available to print. What he gave me was just a paragraph/summary of my high, low, range and most upsetting an interpretation of my affect/emotion. It said I appeared anxious and nervous and crying at one time!!! I told them at the start I was anxious about the nitroglycerin due to a recent history of reactions with (CT contrast, chemical stress echo tracer and other chemical sensitivities and allergies).

I had this done on the cardiology floor of a medium size hospital. (They called this part of the floor the outpatient CathLab) At start of TTT, I said I was concerned that my baseline HR would be higher than my normal and affect my results. SO ANNOYED that another medical person would suggest anxiety especially when the test was positive. I AM NOT ANXIOUS ABOUT STANDING UP! My heart rate increased 60 bpm and returned to normal after laying down.

Sorry--need to rant to people who understand. I did have tears at one point because it was so uncomfortable (I told nurse this!) and I was trying so hard to power through the 40-some minutes to get the data I would need. I was in that catch 22--not wanting to pass out because I never have (who would want to anyway..? silly) but feeling so near black out and knowing it would likely mean a diagnosis. Also the onset of nitro was nearly-painful for me; felt it in my neck & stomach pain. I was not anxious per say during test but very uncomfortable with the intensity of symptoms we all know so well intensified by TTT and then my issue with the nitro. I also was very specific describing symptoms I experienced during the test to the nurses (extreme racing, palpitations, tingling in legs, odd feeling in back of my head, and others) that I would have expected her to note in my chart-----NOTHING.

I went for my records in hopes of taking to a POTS-educated Dr. Also annoying that no Dr was present for my test. Two nurses or one nurse and an aide did the test and kept running out of the room to ask Dr. what to do when the machine beeped alarms (assuming because my BP was too low and/or HR too high. Dr. peeked in once to say "You're fine" and Nurses kept asking /telling me every few minutes I can stop anytime I want. At the start of the test the two nurse people seemed to have some confusion about why nitro was being used vs. other drug--forgot the name. Wish I felt they knew exactly what they were doing! I did feel safe the entire time but just a bit frustrated now.

I left being told (my nurses--not the attending Dr. who was busy or elsewhere rest of time) I was symptomatic and it was positive though because I did not faint it is harder to clearly have a cause of my symptoms. A different dr. interpreted my results.

Oh--- Also, I was misquoted on the chart, it said "I don't want to do this" when test was stopped when actually I said, "I don't think I can do this anymore, I need to lay down" after being prompted and asked every few minutes if I wanted to stop!!

Anyway, sorry to highjack your thread. I guess I meant to respond and mention to you---- why would a dr. suggest increase water intake AND salt from someone who just had symptoms leading to a TTT to anyone other than a POTS patient?!!?!

[corina]

stellaluna, I can imagine how frustrating this must be for you. At least the good thing is that you now know what is on paper and you can explain what happened to any other POTS educated doctor. S/He def will understand!