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And Then You're At Jax » April 14, 2018

Daily Archives: April 14, 2018

Dysautonomia

My diagnosis of neurally mediated hypotension

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If you’ve been following me for a bit, you know my cardiologist referred me to a wonderful physician who specializes in dysautonomia. He ordered some tests and I just completed one- the tilt table test.

POTS suspicion

My doctors had originally diagnosed me with POTS. POTS is a relatively easy diagnosis to determine- your heart rate increases by 30 beats per minute/reaches 120bpm within 10 minutes of standing.

Three different doctors recorded my pulse increasing at this level in their offices. But the tilt table test showed that my pulse only increased by 20bpm within 10 minutes of standing.

According to my doctor, he suspects I still have POTS but I’m skeptical- I like concrete evidence (which with these disorders isn’t something I should expect to get- more to come in another post about what causes dysautonomia).

Tilt table test

After standing for 45 minutes and starting the second phase of testing, I vomited and passed out.

My blood pressure had dropped significantly throughout the standing portions of the test (more than a 25 point systolic decrease) which gave me the neurally mediated hypotension (NMH) diagnosis.

The NMH diagnosis makes sense

This diagnosis makes sense- I initially noticed my symptoms when I would stand for a long period of time, talking to a coworker for example, and would feel as if my blood sugar was plummeting (it wasn’t).

It wasn’t until I began having GI symptoms that I spoke with my PCP who started this process.

Next steps

In the past 24 hours I’ve learned a lot- one of the most important things is that I need to take this seriously.

Treatment involves increasing fluid and salt intake, moving slower and smarter, regular exercise with a dedicated extended recovery time. It involves compression wear. It also involves finding out what foods might be triggering my GI issues.

If I can’t get my symptoms under control with these measures, including a medication I’m already taking, I have to consider twice weekly fluid infusions.

I’m so used to heavy prescriptions (Rituxan) or new devices (insulin pump) that I honestly haven’t taken the recommendations my doctor originally gave me, months ago, seriously enough.

Now that I have a concrete diagnosis that makes sense, I feel ready to make significant changes.