Neurologist appointment conclusion: Hyperadrenergic Postural Orthostatic Tachycardia Syndrome

Today was my 6-month-long awaited appointment with the Neurologist, Dr. Barboi, in Illinois!

I’ll be honest, discontinuing some of my medication for the neurological tests was difficult. As excited as I was for the appointment, I was also looking forward to completing it.

We started a series of four neurological tests at 10:00 AM. The first test was a sweat test where they hook you up to a few electrodes to stimulate nerves to produce sweat. For the most part, it was quick and efficient, although the sensation was similar to being stung by a bee. The result of that test was slightly abnormal. Apparently, my right foot had a slow response to the stimulation.

The next two tests determined heart rate variability, which, if I’m not incorrect, is measured by how you breathe. So I had to breathe in and out for long periods of time and then continuously blow out air for about 15 seconds. I thought this would be a piece of cake, but it was a clear indication that I have to work on my deep breathing. The doctor said my breaths were shallow and my heart rate was elevated.

Then for the fourth test, I did the tilt table. Basically, you lie down on a table, they strap you down because they’re going to tilt the table upward, and then they measure your heart rate and blood pressure.

When a person with a normal functioning nervous system is tipped up, their heart rate will only increase to about 30 beats per minute. My heart rate increased by about 70 beats per minute! My blood pressure also increased. After being in an upright position for several minutes my heart rate stabilized at 120 beats per minute, which the doctor said is still too high. A “healthy” person’s stabilized heart rate would probably be in the 70’s.

Basically, he said everything in my body is going too fast. My nervous system is in overdrive and he concluded I have a form of autonomic dysfunction (dysautonomia) specifically known as Hyperadrenergic Postural Orthostatic Tachycardia Syndrome (or Hyper-POTS). If I’m upright for too long, feeling symptomatic, and do not address the situation, then fainting is not just a possibility, it’s imminent. It’s just a matter of time before your brain will take control and drop you to the ground in order to stabilize your body.

So, why does this happen? What’s the source? That’s the million dollar question. He feels it may be a genetic pre-disposition. He acknowledged it could be others things too, like the Lyme test results I recently received (I’ll write another post on that later).

This is what bothers me most. If I knew the source, then I could potentially fix the problem. I don’t know if I’ll ever find the source though. I may just have to manage this like a person manages diabetes or a thyroid disorder.

The good news is there are ways to manage it (and possibly even go into a somewhat “remissive” state).

The doctor confirmed there are many things that my particular form of dysautonomia is not:
-It’s not a terminal illness.
-My symptoms will not necesarrily be this extreme for the rest of my life. There’s potential for them to change and improve.
-It’s not an anxiety disorder. I loved that he really drove this point home. There are chemical and physiological reactions happening throughout my body and brain that account for the “panic attack-like” episodes I experience. Can someone with this illness be anxious though? Yes. If your body is interpreting sensory input incorrectly, producing excess stress hormones, and your heart rate is crazy elevated- you will most likely feel anxious.

So how can it be managed?
-Medication
-The doctor stressed that I need to slow down, keep my external stress to a minimum, and listen to my body when it needs to rest
-Maintaining a proper sleep regimen (this is huge)
-Re-conditioning my body physically by doing “slow” exercises, such as: yoga, elastic band exercises, stationary bike, and walks. He said I should start doing these for 10 minutes at a time and work up from there minute by minute
-Re-conditioning how my body emotionally reacts to stress (deep breathing, mindfulness, meditation)
-Eating well and staying hydrated
-Avoiding exposure to excessive hot or cold temperatures outside

At least, it’s just one aspect of my life and it’s made me learn to appreciate everyday things on larger scale.

Overall, the appointment was a good experience. I’ve built a small team of doctors who I genuinely feel want to help me and I believe things will get better as time goes on (or at least I’m going to keep telling myself that everyday)!

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