Why I Like Seeing Doctors Who Are Unfamiliar With POTS


I know this sounds strange, because so often it is frustrating when medical professionals are unfamiliar with a condition. I recently saw a doctor who had never heard of POTS (postural orthostatic tachycardia syndrome).  Whenever this happens I start by explaining my condition simply as “my autonomic nervous system is faulty.” I then add in the symptoms I have and how they can become more dangerous or severe. I then usually talk about what medications I am currently using. Once the facts are out there I will usually take one symptom first and ask if that doctor has any ideas to treat that specific symptom.

Here is where the magic happens. Doctors who are unfamiliar don’t automatically revert to “well, these three medications are the basics and that’s all there is so learn to deal with it.” For instance, I asked my newest doctor about my extreme fatigue. His first suggestion was, of course, something that elevates heart rate, so I had to remind him we needed to avoid that. He then had ideas of some different medications, as well as natural herbs and supplements that can help. He suggested Ashwagandha root, which is an adaptogenic herb, meaning it will work more over time.  The dose he put me on was three times the dose recommended on the bottle, and honestly it did raise my stamina for standing and activities by at least 10-15 minutes. Any additional elevated time is golden for someone on full disability.

This doctor was also interested in genetic testing to check and see how quickly I metabolize medications, which proved to be very informative and useful. None of my other specialists had ever suggested that type of testing.

I explained that it was unknown what caused POTS to activate in my body, and that it could be any number of things. He decided to order a 24-hour urine test to rule out heavy metal poisoning as well. The results of this test did nothing other than rule out heavy metal poisoning, but isn’t that still useful? If the test had shown anything we may have been able to make some big changes in my health.

I like seeing doctors who are unfamiliar with my condition because they often use their knowledge of symptom treatments and occasionally suggest something that another doctor might not think of since they already know the protocol thus far for treatment.

However, I always have to remember to check my medications through a drug interaction checker online before trying anything new, especially since the new doctor may not be looking at my current medication list when prescribing another medication.

It shouldn’t be scary to see a doctor who is not familiar with your condition. If a medical professional has a heart to help, they may suggest something useful or helpful that another doctor missed. I believe that it’s worth a try. There’s always the chance I might gain some pain relief, get help with sleep or even find something that can treat the condition itself.

Follow this journey on POTS: Finding Smiles in the Trials.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via utah778.


Find this story helpful? Share it with someone you care about.