sb4 Posted January 13, 2017 Report Share Posted January 13, 2017 Hey, I took a tilt table test a while back. The result was: Laying down: 110 bpm Upright: 145bpm I was on Mirtazapine and Propanolol with the test. Dx for pots is a raise in bpm by 30 from lying to standing (check) OR over 120bpm on standing (check). I have recently received a letter from the nurse of the POTS specialist saying that the specialist (whom I have never met) has diagnosed me with anxiety and hyperventilation!? I can say for sure that I would bet my life on not having anxiety. I know what anxiety feels like and I know I am no more anxious now than I was when I got ill, after a virus. I have fully commited to things like meditation, deep breathing, electric stimulation, ASMR, etc and have noticed almost no improvement in my symptoms. Furthermore, last time I was in hospital I was cleared by the psycologist from having any problems. I can only think that he has looked at my past notes and found that other doctors have diagnosed me with this in the past when I was unaware of what POTS was. I find it mind boggling that he has Dx me with anxiety without having ever met me... Last time I met and talked with his nurse. I am going again soon to see, I presume, this nurse again. What can I do to turn this around? I am struggling big time physically and without treatment for this I am in BIG trouble. Thanks, Sean. Quote Link to comment Share on other sites More sharing options...
corina Posted January 13, 2017 Report Share Posted January 13, 2017 I'm so sorry Sean, this doesn't seem appropriate to me. It might be helpful to keep track of your data for let's say a week. You could do your own "poor man's" test measuring heart rate and bp while seated, then stand up and measure for about 10 minutes, every 2 minutes. It will give you insight in how your heart rate and bp react to standing. You could hand over the list to the nurse/doctor and talk over the results. I'd also let them know being cleared by a psychologist (it could be helpful to have that on paper also!). Hope this helps. Good luck! Quote Link to comment Share on other sites More sharing options...
sb4 Posted January 14, 2017 Author Report Share Posted January 14, 2017 Thanks Corina, I'm fairly sure they would dismiss the list or worst view it as a sign of hypercondria. Besides my heart rate is more stable with the drugs. However my symptoms are all still here. Quote Link to comment Share on other sites More sharing options...
TCP Posted January 14, 2017 Report Share Posted January 14, 2017 Hi sb4 Sorry to hear that you are having problems getting a diagnosis of POTS. I have had two tilt table tests and the first one I was on Propranolol and Ivabradine the second and both times they were conclusive for POTS. Both times the physiologists/doctors who carried out the tests stated POTS, but the Cardiologist who interpreted the results questioned the result and would NOT commit to diagnosing POTS. Luckily I questioned the first TTT result and wrote to the Cardio I was seeing at the time and she suggested that I saw another Cardiologist/Electrophysiologist who is very interested in POTS and he had no issues diagnosing POTS based on my symptoms and both TTT results. I would suggest that the results are looked at again and ask for a second opinion based on these results and your symptoms. Good luck! Quote Link to comment Share on other sites More sharing options...
sb4 Posted January 14, 2017 Author Report Share Posted January 14, 2017 Thanks TCP, I may do that or I may request to see the specialist in person, instead of his nurse. Quote Link to comment Share on other sites More sharing options...
TCP Posted January 15, 2017 Report Share Posted January 15, 2017 21 hours ago, sb4 said: Thanks TCP, I may do that or I may request to see the specialist in person, instead of his nurse. Yes, good idea. I did actually get to see the cardio who oversees TTT results and we chatted and he wasn't aware that I had autonomic dysfunction and I think if he had been made aware it may have changed his interpretation of the results. I went onto see a much more clued-up, younger doctor who is more skilled in this field. I think many tests, for various conditions, are often played down as doctors aren't confident or savvy about understanding or giving definitive diagnoses. Looking at test results in isolation fails to take in the patient's medical history which is often vital if there is to be an accurate diagnosis. I think doctors forget that patients suffering will continue without appropriate treatment. Quote Link to comment Share on other sites More sharing options...
sb4 Posted January 15, 2017 Author Report Share Posted January 15, 2017 1 hour ago, TCP said: Yes, good idea. I did actually get to see the cardio who oversees TTT results and we chatted and he wasn't aware that I had autonomic dysfunction and I think if he had been made aware it may have changed his interpretation of the results. I went onto see a much more clued-up, younger doctor who is more skilled in this field. I think many tests, for various conditions, are often played down as doctors aren't confident or savvy about understanding or giving definitive diagnoses. Looking at test results in isolation fails to take in the patient's medical history which is often vital if there is to be an accurate diagnosis. I think doctors forget that patients suffering will continue without appropriate treatment. I understand what you're saying however the doctor who has diagnosed me, without seeing me, with anxiety IS a pots specialist, and the only one in my area. Quote Link to comment Share on other sites More sharing options...
Clb75 Posted January 16, 2017 Report Share Posted January 16, 2017 With anxiety, your symptoms would be consistent no matter what position you are in. They would not change or get worse when in an upright position, then get better when lying down. Quote Link to comment Share on other sites More sharing options...
TCP Posted January 16, 2017 Report Share Posted January 16, 2017 22 hours ago, sb4 said: I understand what you're saying however the doctor who has diagnosed me, without seeing me, with anxiety IS a pots specialist, and the only one in my area. Yes, so was the one who looked at my results, but he wasn't as expert/confident enough to give a diagnosis, as the last one. The final doctor I saw was much younger and more au fait with the whole condition and has written papers about it. It made all the difference. Good luck and I hope you get the diagnosis sorted out! Quote Link to comment Share on other sites More sharing options...
TCP Posted January 16, 2017 Report Share Posted January 16, 2017 I have been labelled anxious in my notes for years as I had a fast pulse rate and I didn't know. With autonomic dysfunction you will get anxiety as part of the pattern. If you think about it, if your nervous system is damaged, malfunctioning or inflamed then you will show the signs of being hyper anxious. To say that your condition is anxiety when you obviously have the signs of POTS, then aren't a very good POTS doctor and do not follow the correct criteria for diagnosis. Quote Link to comment Share on other sites More sharing options...
sb4 Posted January 17, 2017 Author Report Share Posted January 17, 2017 16 hours ago, TCP said: I have been labelled anxious in my notes for years as I had a fast pulse rate and I didn't know. With autonomic dysfunction you will get anxiety as part of the pattern. If you think about it, if your nervous system is damaged, malfunctioning or inflamed then you will show the signs of being hyper anxious. To say that your condition is anxiety when you obviously have the signs of POTS, then aren't a very good POTS doctor and do not follow the correct criteria for diagnosis. Yes I understand this somewhat from normal doctors but not pots! Thing is I don't even act anxious. Frustrating. Quote Link to comment Share on other sites More sharing options...
TCP Posted January 17, 2017 Report Share Posted January 17, 2017 6 hours ago, sb4 said: Yes I understand this somewhat from normal doctors but not pots! Thing is I don't even act anxious. Frustrating. Nothing surprises me with specialists. Several neurologists I have seen have been useless with the conditions that I have presented over the years. They will not follow-up with any tests even when I say I will pay privately for them. Gastroenterologists, neurologists, cardiologists, gynaecologists, rheumatologists and respiratory doctors etc have all misdiagnosed me with many conditions and many were very obvious. Some have denied that I have certain things and then admitted later that I have them. I found out after accessing my medical notes that I had endometriosis, only no one bothered to tell me! They can get it very wrong and that is why we have to push for tests etc or we are left suffering. Quote Link to comment Share on other sites More sharing options...
sb4 Posted January 17, 2017 Author Report Share Posted January 17, 2017 2 hours ago, TCP said: Nothing surprises me with specialists. Several neurologists I have seen have been useless with the conditions that I have presented over the years. They will not follow-up with any tests even when I say I will pay privately for them. Gastroenterologists, neurologists, cardiologists, gynaecologists, rheumatologists and respiratory doctors etc have all misdiagnosed me with many conditions and many were very obvious. Some have denied that I have certain things and then admitted later that I have them. I found out after accessing my medical notes that I had endometriosis, only no one bothered to tell me! They can get it very wrong and that is why we have to push for tests etc or we are left suffering. Yes unfortunately our experiences seem common to most with these problems. Quote Link to comment Share on other sites More sharing options...
TCP Posted January 18, 2017 Report Share Posted January 18, 2017 Yes, if you have hidden or poorly understood conditions then doctors think horses not zebras. "When you hear the sound of hooves, think horses, not zebras." ... Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions. ... Quote Link to comment Share on other sites More sharing options...
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