Struggling to get diagnosis... POTs?

Posted , 4 users are following.

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.

0 likes, 2 replies

2 Replies

  • Posted

    Lyrica won't treat PoTS. What country do you live in? In the UK there are a list of physicians with an interest in PoTS on the charity web site- mostly cardiologists rather than neurologist. Maybe for a second opinion.

  • Posted

    All I can say is that I'm sorry you had this bad experience.

    What happened to your heart rate during the rest of your test?

    For POTS to be diagnosed, you have to show a sustained HR increase. If it dropped after the 1-minute mark, then that might not be considered a sustained increase.

    Regardless of whether you have POTS or not, they should still be looking at autonomic dysfunction. There are many conditions "adjacent" to POTS. These are usually called orthostatic syndromes, or chronic orthostatic intolerance. These can be diagnosed by an autonomic specialist.

    Are you able to see another specialist? If you don't mind saying which country you live in, I can point you to some resources to help find one.

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.