Dysautonomia... What Is It, Anyhow?

Many people have asked us exactly what is wrong with Kayleigh. It does have a name, although it is hard to explain.

Dysautonomia is a dysfunction of the autonomic nervous system in the body. The autonomic nervous system regulates the automatic organ functions of the body that occur on their own... things like heart rate, blood pressure, your temperature, your respiration, your digestion, etc. In Dysautonomia, some of these things don't function properly sending the body into chaos. Often, the symptoms are so unrelated to each other that it's tough to diagnose.

There are 4 types of Dysautonomia and Kayleigh has been diagnosed with 3 types as of the time of discharge from Duke Med! Lucky her!

Postural Orthostatic Tachycardia Syndrome - basically it is when the body is unable to adjust blood pressure and heart rate when a person goes from sit to stand. In Kayleigh's case, when she is sitting and stands up, her heartrate goes up by about 50 beats per minute and her blood pressure drops drastically... all within seconds of standing up. Kind of like an orthostatic hypotension to the max! There are also other things involved in POTS that aren't understood that make one fatigued, weak, and unable to function.

Neurocardiogenic Syndrome - This is characterized also by a rapid drop in blood pressure, but also a rapid drop in heart rate causing the person affected to pass out and sometimes even become asystolic (not have a heartbeat at all for a period of time). Asystole is what the doctors believe has happened to Kayleigh on at least 2 occasions - once when she collapsed on April 12th at school and once during a test they performed at Duke Med on July the 5th.

Primary Autonomic Failure - This is kind of the biggie that lumps everything all together and caused her spiral downward. PAF is a degenerative disorder of the Autonomic Nervous System where her ANS just slowly started to shut down. In Kayleigh's case specifically, it started with a slow decrease in heart rate and blood pressure over a period of time that was so subtle that it went unnoticed because she was functioning pretty well, just got tired easy. As it progressed her ability to eat a normal meal became a problem. She would get hungry, start to eat, and then become very nauseous because her digestive system wasn't responding properly. Eventually, it got to a point where she wasn't eating hardly anything other than things she knew would not make her sick. The worse it got, the less she ate, and her heart rate and blood pressure drastically started to drop, then her heart wasn't able to sustain a normal sinus rhythm. This eventually left her very lethargic, weak, fatigued, and unable to function at all. This, ultimately, is what took us to the Emergency Room on July 11th.

We are very grateful to the team at Duke Medical Center for putting ALL of the pieces of the puzzle together and being able to treat all of the symptoms involved. She will remain on a slew of medications to keep her heart beat and blood pressure where they need to be, allow the nausea to remain at bay and keep her appetite up, and help her maintain her energy and ability to live a normal life.

So blessed to live in a time where modern medicine can give her her life back!