fbpx
And Then You're At Jax » Blog Archives

Tag Archives: neurally mediated hypotension

Hope

Hitting the reset button for your body

Published by:

Today isn’t a Monday. It isn’t New Year’s Day. It isn’t even the first of a month. It’s Saturday, May 5th. Regardless of how insignificant today may be to make a change, I’m starting something new today. I’m hitting the reset button.

Over the past few years, I’ve tweaked with my diet and exercise. I was off gluten for awhile (and felt noticeably different), killed it at the gym. But no “plan” stuck with me.

I’ve realized that lately, I’ve been pushing and pushing my body to accomplish things despite it repeatedly telling me “no”. I’ve gone to the gym and boasted about my hour long workouts, only to not be able to move for two days after.

At a conference last weekend, my body repeatedly tried to tell me to slow down in the form of nausea and dizziness. I pushed on until my body had me hurrying up to my hotel room so I could vomit and lay down, mid session.

When I met with my rheumatologist this week, we discussed the recommendations my dysautonomia doctor had made in regards to POTS and Neurally Mediated Hypotension. She asked how fluid intake was (good, I’m at least very good with that!) and exercise.

I explained my frustration with going to the gym and not being able to function for a few days after. I couldn’t figure out how I was supposed to do an hour of exercise every day. She told me I needed to start over and that it was unacceptable for my body to feel so awful. She advised me to go to the gym, get on the recumbent (ughhhh) bike for 20 minutes and then leave.

Regardless of how good I feel, I have to stop as soon as my time is up. She said I can add on a bit over time, including resistance and strength training, but only after I see how I feel the next day or two.

I wasn’t sold on her idea but as I went for my Rituxan infusion, it started to consume my thoughts. As I pumped this nasty drug into my arm for hours, I thought about how much I am doing against my body. I am constantly pumping it full of drugs, like methotrexate and Rituxan. I eat basically whatever I want because it’s easy or I don’t want to put energy into preparing food. I push myself with the promise of “resting later”.

There are things I can’t change and I know my diagnoses aren’t going anywhere. I’m still going to have to work, raise teenagers, battle the cat for part of my bed to sleep in, and deal with traffic.

But. What if I can be a little more intentional with my body?

I can give it more quality food, the rest it is so desperately begging for, movement that is helpful not hurtful? Maybe will I feel a bit more at peace with my body and not at odds? And how will that peace come through in my interactions with the world around me?

So today, I’ve hit the reset button. I’m still my old self but with a few pending updates to install. This may take awhile.

Dysautonomia

My diagnosis of neurally mediated hypotension

Published by:

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.