Struggling to get a diagnosis... POTs?

[penguin2]

For the past several months, I've been dealing with POTs symptoms.. lightheadedness, pre-syncope when standing, exertion, or in heat, frequent headaches, tremors, abdominal pain, chronic pain, chest pain, heart palpitations, fatigue, shortness of breath, brain fog, exercise intolerance, reddish/purple color (blood pooling) in legs and feet when standing, and the biggest thing: my heart rate increases by 30+ bpm when I stand up from resting supine, and it sustains for at least 1 minute.

I was initially referred to neurology by my PCP for new and sudden neuralgia pain and palpitations. The nerve pain has since gotten better after a short stint of gabapentin and chiropractic care. They also had me wear a heart monitor for 6 days due to the palpitations - the Ziopatch results showed some tachycardia (my hr went up to 175 even though I had not been exercising), and some PVC's, but was noted as "fairly benign". At my follow up with neurology, when they wanted to prescribe me long term Lyrica, I declined the drug and decided to push for a tilt table test regarding my other symptoms. They performed a poor mans TTT (they called it orthostatic test), and confirmed my resting heart rate was 73 bpm and at 1 minute standing my hr was 109 bpm. This led them to order autonomic testing where they did the QSART, breathing exercises, Valsalva Maneuver, and the TTT. A technician performed the test, who is familiar with POTs, but I have never seen the doctor who read the report from the test. The technician wrote on the report my lowest heart rate was 63 at rest, my 1 minute standing heart rate was 100 bpm. I waited over 1 month for the results of the test, which indicated the test was "normal." They do not want to do any further testing or care for my symptoms. When I read the report from the physician, he wrote my heart rate range was 63-83 bpm, not 63-100 bpm. When I asked for the reason for the discrepancy, he responded:

"The measurements reported by the technician and by myself are measured in different ways. The technician measures HR as a general guide during the test. The range I use for interpretation is as measured automatically by the equipment during specific parts of the test and those are the readings used for formal diagnosis."

This tells me the doctor is allowing a computer system to make his diagnoses, and not his skills and education as a doctor. I am wondering if anyone else has had something similar happen, and how you may respond to this? I am also curious if and how they used the information from my other tests (the ziopatch and the poor mans ttt) to make this call.. it appears they haven't even considered the other results, nor my symptoms. I just want to get proper diagnosis and treatment for my symptoms as it is affecting my life, work, etc.

[MomtoGiuliana]

My EP has told me he bases diagnosis on symptoms as well as a Tilt Table Test.  I am wondering if the dr you saw is an expert in autonomic dysfunction?  I would recommend looking for a EP who treats patients with autonomic dysfunction for another opinion.

[penguin2]

Thank you for your reply. The provider I saw is not an expert in autonomic dysfunction.. when I looked at the dysautonomia international website, the closest provider to me is about 3 hours away.. Though I do know of other people in my area who were diagnosed with POTs by a cardiologist at the same organization I am going to. I wonder if it's worth it to consider asking them or my PCP for a referral to cardiology, or if I should just cut my losses and travel the 3 hours?

[MikeO]

I would at minimum get a second opinion. Keep in mind that most of the clinics that specialize in Dysautonomia have long waits to get in. 

[TCP]

I saw one cardiologist who was clueless about POTS. I had two tilt table tests but the results were interpreted by a doctor who sat on the fence and wouldn’t commit to a POTS diagnosis. Finally I saw a cardiologist electrophysiologist and he looked at both TTT results and diagnosed POTS straightaway. This particular doctor was highly skilled in arrhythmias and knew even from my clinical symptoms I’d got it. 

[Pistol]

I had 2 TTTs done by two different cardiologists. One was positive for NCS ( I passed out ) and the second was determined to be normal. The EP that did the second TTT was extremely rude and ignorant about POTS. He claimed the increase in HR during the test was due to "hysteria" --- could you imagine? Well, needless to say I then saw an autonomic specialist ( after 1 year waiting ) who diagnosed me with hyperadrenergic POTS ( conformed by blood test ) and said the second TTT was clearly and blatantly positive for POTS. 

@penguin2 I definitely would see another doc right away. A three hour drive to see a specialist is not too bad, that is how long I drive to see my cardiologist, and my autonomic specialist is an 8 hour drive away. 

[penguin2]

9 hours ago, Pistol said:

I had 2 TTTs done by two different cardiologists. One was positive for NCS ( I passed out ) and the second was determined to be normal. The EP that did the second TTT was extremely rude and ignorant about POTS. He claimed the increase in HR during the test was due to "hysteria" --- could you imagine? Well, needless to say I then saw an autonomic specialist ( after 1 year waiting ) who diagnosed me with hyperadrenergic POTS ( conformed by blood test ) and said the second TTT was clearly and blatantly positive for POTS. 

@penguin2 I definitely would see another doc right away. A three hour drive to see a specialist is not too bad, that is how long I drive to see my cardiologist, and my autonomic specialist is an 8 hour drive away. 

Hysteria ... Wow! That is awful. Sounds archaic. Thanks for the advice, yeah I suppose it's not too terrible of a drive, it's just hard to justify spending the money when I can probably start treatment on my own with salt, compression, and chop protocol. I am having a hard time deciding if it's worth it. I've also considered functional med since allopathic med seems to be a dead end for me. 

[Pistol]

3 hours ago, penguin2 said:

, it's just hard to justify spending the money when I can probably start treatment on my own with salt, compression, and chop protocol.

Many people with POTS symptoms do improve with salt/fluid and compression. It is usually the recommended first-line treatment, so I dont think it would hurt for you to try self help first. ( Please refer to our information section for further info on this ). However- it is always Best to seek medical advice first, we should never assume we know how to treat ourselves

[penguin2]

I was thinking about going that route as well. Just sent a request to the neurologist's office to ask to send me to cardiology. If I get nowhere with cardiology I am going to pursue functional med.