Dysautonomia

Picture a giant umbrella with dozens of strings hanging down, and at the end of those strings is an array of complicated illnesses and/or syndromes. The umbrella is the autonomic nervous system, and the illnesses below cause malfunctions in it.

The Autonomic nervous system is just as it sounds- everything your body does automatically like heartrate, blood pressure, temperature regulation, etc..

I have POTS, orthostatic intolerance, and partial autonomic failure and many symptoms of others in the dysautonomia family. All of which I know probably as much, if not more than the doctors. As for the others below the umbrella, I’m not as familiar with.

There are so many different symptoms associated with these illnesses, but they seem to all be similar to each other- after all they effect the same system.

POTS is characterized as a heartrate (hr) that exceeds 30+ bpm within 10 minutes of standing or upright position. The definition of POTS says that blood pressure is not effected, as that would be orthostatic intolerance- but as they can be interconnected, I believe they shouldn’t rule out POTS if blood pressure is effected.

Orthostatic intolerance is also just as it sounds, orthostatic means upright position, therefore people who have it experience intolerance to standing     (in blatant terms). At my beginning stages of diagnoses, I had a very strong orthostatic intolerance and that combined with POTS is not a good outcome- it results in not being able to stand for more than 2 minutes without going unconscious. My heartrate exceeded 180, which resulted in scary “episodes” that would last about a hour, but I am happy to say that now my symptoms are well managed- partly due to powerchair use but also medication and infusion combinations that we are still working on.

As for Partial autonomic failure, it doesn’t have an official place under the umbrella but pure autonomic failure is basically the term, it just hasn’t taken all of the autonomic nervous system to failure, just partially.

Neurocardiogenic syncope– A loss in consciousness due to dilation of blood vessels, slow heart rate, or low blood pressure.

I have a tempered relationship with even the word syncope; all of my emerge visits have resulted in me being passed off as “its probably just a syncope episode.” I’m definitely not downplaying syncope, because it can be a very serious, scary symptom that I have experience many times, but many doctors and nurses don’t talk about it that way- they don’t understand how much it can effect someone’s life- especially if its happening 5+ times a day. They didn’t take into consideration all the symptoms I was having along with the episodes either, and how long they were lasting. Which gave me an devaluing feeling associated with neurocareogenic syncope.

*I will continue to update this post with different definitions of the dysautonomia family when I learn more about each one.


check out the Dysautonomia international page for more information, events, and research.

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