castronovo112587 Posted November 14, 2013 Report Share Posted November 14, 2013 Had tilt table test today and I am now allll the way confused. So my resting heart rate while laying there about 20 min was 70-75. Once they tilted me to the upright position my heart rate instantly jumped up to about 116-118 within 10seconds. However afterward it dropped, not to normal level but it dropped to about the 90s to maybe 105 and kept fluctuating from then on somtimes dipping back into high 80s for a second but basically hovered around high 90s to 100 and then after 10 minutes I got lowered down and it went back down to 70s lifted again and instantly 110 but did the same thing again dropped down to high 90s to 100. Confused because is this pots or not since it wasn't a sustained heartrate? So confused because I have every symptom of pots down to the pupillary dysfunction and bladder issues. My blood pressure was 115/73 laying down and upon first tilt went up to 140/90 immediately but then stabled out and didn't change much after. The tilt was done 3 times and for 10 min each time and each one same thing initial 40beat rise immediately and then a drop and fluctuating heartrate. Quote Link to comment Share on other sites More sharing options...
KareBear Posted November 14, 2013 Report Share Posted November 14, 2013 Were you still on any meds, beta blockers, before the test? I would wonder if they affected your test possibly. We know that many of us can get our heart rates or Bp controlled with meds but still have all the other POTS symptoms. Quote Link to comment Share on other sites More sharing options...
castronovo112587 Posted November 14, 2013 Author Report Share Posted November 14, 2013 I don't take any meds so I'm puzzled I know it's definitely not normal to have your heart rate raise that high from standing. All my friends and family heart rate doesn't goes up 10 beats or less when standing. Does heart rare have to be sustained for it to be pots or does the initial 40beat increase mean I have it even when it dropped it would still hover around the 25-30 beat range. I did not faint. Test made me dizzy, warm and gave me a headache and heavy feeling in chest. Quote Link to comment Share on other sites More sharing options...
castronovo112587 Posted November 14, 2013 Author Report Share Posted November 14, 2013 Sorry typing fast on phone Quote Link to comment Share on other sites More sharing options...
castronovo112587 Posted November 14, 2013 Author Report Share Posted November 14, 2013 I don't take any meds so I'm puzzled I know it's definitely not normal to have your heart rate raise that high from standing. All my friends and family heart rate doesn't goes up 10 beats or less when standing. Does heart rare have to be sustained for it to be pots or does the initial 40beat increase mean I have it even when it dropped it would still hover around the 25-30 beat range. I did not faint. Test made me dizzy, warm and gave me a headache and heavy feeling in chest. Quote Link to comment Share on other sites More sharing options...
Chaos Posted November 14, 2013 Report Share Posted November 14, 2013 I think usually they say it's a sustained increase, but it doesn't sound like a typical TTT from what you are describing. At least I haven't heard of anyone having it done 3 times in a row like that. The other thing to keep in mind is that in order to be diagnosed you need to have the HR change but you ALSO need to have clinical symptoms. Sounds like you have plenty of those. I've heard of TTTs being 10 minutes or 45 minutes but not 10 minutes, done 3 times in a row. By doing an extended version (45 minutes) it allows them to look for what's called delayed accentuated tachycardia which is a HR increase which may occur beyond the first 10 minutes which is also abnormal. It may also allow them to diagnose NMH or NCS if you have a vaso-depressor and/or vaso-vagal reaction beyond the 10 minute mark. Hard to say what your doc will say you have as it doesn't sound like they are particularly familiar with how to diagnose this disorder. However, it is good to have it done and then you can get the full records (not just the report) so you can send them along if you try to get in to a specialty clinic to see someone who knows more about the problem.The other thing to keep in mind is that our symptoms tend to vary from day to day so just because you might not have a "technically" positive result today, it doesn't mean you don't have the disorder. A doctor more familiar with the disorder will know that. Quote Link to comment Share on other sites More sharing options...
castronovo112587 Posted November 14, 2013 Author Report Share Posted November 14, 2013 Thank you Chaos, yes I definitely have good days and bad days. 2 days ago my heartrate was in the 130s while standing the whole time. The cardiologist who I seen definitely does not know much about POTS at all. He was there during the test. I am definitely going to go to mayo clinic I just figured if I waited I would be able to present them with these tilt table results and have a better chance of getting in. There are days where my blood pressure is extra low (gone to 80/50) and my heart rate extra high and it seems like those days I'm like that all day no matter what I do to help and then other days my bp will be great 120/80 and heartrate not as bad. But yes I definitely do have all the symptoms like flushing, diarrhea, palpitations, sensitivites, chest pain, bladder abnormalities, dizzyness and sweating when standing for a while and so many more. The cardiologist does believe I have some sort of autonomic dysfunction and he said he rarely orders tilt table tests and hasn't dealt with pots patients. My old cardiologist refused to even do a tilt table which is why I went with this guy. I will be calling mayo next week. Quote Link to comment Share on other sites More sharing options...
Chaos Posted November 14, 2013 Report Share Posted November 14, 2013 It may be helpful to send some of your personal readings from home monitoring (like the low BPs and high HRs) along with the TTT results. Also you might want to include a letter briefly describing your symptoms as well when you send in your records. A referral from the cardiologist who thinks you have an autonomic dysfunction may be helpful also. Good luck! Quote Link to comment Share on other sites More sharing options...
castronovo112587 Posted November 14, 2013 Author Report Share Posted November 14, 2013 Thanks Chaos. Hopefully between that and a letter from my carcinoid specialist I should be good. He is the one who suggested to me that I have pots. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted November 14, 2013 Report Share Posted November 14, 2013 Hi Rosey,You deserve an I survived three tilts in a row medal. Sorry to hear that. I would have kicked the bucket. I lasted 6 minutes until I woke up en route to the ER in a random hallway. .. during these three tests, did they give you any IV fluids or take any blood before, during or after by any chance?Just curious.. did the dr who completed the test write the impression/diagnosis on the exam report?Hang in there,Sarah Quote Link to comment Share on other sites More sharing options...
castronovo112587 Posted November 14, 2013 Author Report Share Posted November 14, 2013 No blood and no IV fluids. They must seemed to not know how to do it for pots. Thanks all. Quote Link to comment Share on other sites More sharing options...
castronovo112587 Posted November 14, 2013 Author Report Share Posted November 14, 2013 He said was going to dictate a report saying borderine pots Quote Link to comment Share on other sites More sharing options...
KareBear Posted November 14, 2013 Report Share Posted November 14, 2013 I'd think "borderline POTS" would be enough reason to go to Mayo and get a second opinion. I agree with others that some days our symptoms are worse so could have just been a little better today but your daily symptoms tell a better picture. That was an unusual TTT. At least they are still feeling like it is POTS related. I hope the doc can try some meds to help you now. Quote Link to comment Share on other sites More sharing options...
castronovo112587 Posted November 15, 2013 Author Report Share Posted November 15, 2013 Yes I thought it was unusual. He never had to do a diagnosis for pots before so I guess he didn't know the proper way lol Quote Link to comment Share on other sites More sharing options...
Chaos Posted November 15, 2013 Report Share Posted November 15, 2013 Do you live near Mayo? Since you are referring to a 40 point increase I'm assuming you're under 21. Have you checked into the other places that work with younger patients? Quote Link to comment Share on other sites More sharing options...
castronovo112587 Posted November 15, 2013 Author Report Share Posted November 15, 2013 I'm 25 and yes I am lucky enough to live about an hr away from the Jacksonville one Quote Link to comment Share on other sites More sharing options...
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