Sypree Posted May 18, 2017 Report Share Posted May 18, 2017 Hi, I have IST and a heart murmur and have been suffering from unexplained chronic pain and neuropathy that is most prominent in my left leg. I have been tested for pretty much everything you can imagine. Recently I returned to the neurologist and he noted my resting heart rate was 140. I explained that every so often I have a very high heart rate at the doctor's and am urged to see a cardiologist but I'm always told that I am fine (minus the IST). This time, the neurologist ordered the crude version of a TTT and my results were resoundingly conclusive of POTs. He insisted on a TTT which I had. However, the results were strange. My heart rate was abnormally low that day (it is generally 90 lying down, 120 resting, and 140 moving around) and, while I passed out during the test, my heart rate only dropped to about 80 from about 110. They could not get a reading on my BP. I am at a loss because the cardiologist said she had never experienced this before and has no idea what I have. Has this happened to anyone here? I feel so lost because I know I have a neurological disorder due to the severe nerve pain and I have many POTS symptoms... S Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted May 18, 2017 Report Share Posted May 18, 2017 Sounds very similar to my first TTT while I did not pass out my blood pressure dropped down to 70s/50s and the NP who was doing the test was very surprised that I didn't pass out, he did end the test early because they already had enough information for a diagnosis and he didnt want me to pass out. My heart rate had also gone from 90s sitting to 1 30s during the tilt, I had periodic drops in heart rate but it would return to the 1 30s. This is very diffrent from my current status as I've had major shifts in symptoms. My team does not feel I need another TTT because my condition is very obvious for POTS/NCS and I now have a pacemaker so they know what my heart is doing 100% of the time, at least for hr and rythym. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted May 21, 2017 Report Share Posted May 21, 2017 Hi there, Welcome to DINET! Have you heard of Neurally Medicated Syncope (NCS)/Vasovagal Syncope? Here are some links with info: http://www.dinet.org/content/information-resources/ncs/ I have IST also, have they recommended Ivabradine for heart rate control? Hope you find some answers and relief soon! Sarah Quote Link to comment Share on other sites More sharing options...
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