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.

TOPICS
JOIN THE CONVERSATION

Related to Postural Orthostatic Tachycardia Syndrome

woman in heavy clothing backpacking in grand canyon

What Hiking the Grand Canyon Taught Me About Living With Illness

Mountains to Climb A Facebook memory popped up this week with a picture of me smiling and hiking down a mountain with a pack on my back. This was me seven years ago, embarking on a four-day hike down the Grand Canyon. My first thought as I looked at the picture, as with many of [...]
sad girl with hand on head on black background

3 Things I Get Tired of Hearing About My POTS

I want to start this post off by saying I know most of the time people are only trying to help, and that these words come with the best intentions. However, that’s also why I’m writing this, because while things do come with the best intentions, they can be really hurtful, too. 1. “You’re being [...]
college student laying in bed and reading a book for class

When POTS Challenges Your Identity as an Academic Overachiever

POTS and I have a complicated relationship. Here’s the thing: I’m an over-committer. Like, the kind who is utterly convinced that there are infinite hours in a week and continues to take on more things until they crush me. I’ve done this since before chronic illness, when I could bounce back quickly. I don’t particularly [...]
man standing in front of lake and mountains

The Relief I Find in Sharing My Story After Years of Misdiagnosis

Being able to tell my story has been a sort of relief valve, allowing me to talk about the frustrations of a misdiagnosis and then living with an “invisible” illness on a daily basis. It is comforting to know I am not alone struggling through each day, yet my heart breaks for each and every [...]