Dysautonomia Awareness Month 2018

October is Dysautonomia Awareness Month. Dysautonomia is the umbrella term for the dysfunction of the autonomic (involuntary) nervous system. The autonomic nervous system controls almost all involuntary functions including breathing, digestion, sweat production, blood pressure, heart rate, and pupil dilation and constriction to name a few.

I have a few different types of dysautonomia making my case challenging to treat. They are Postural Orthostatic Tachycardia Syndrome (POTS), orthostatic hypotension (OH), vasovagal/neurocardiogenic syncope (VVS/NCS) and generalized dysautonomia (because some of my symptoms don’t fit with some of the known conditions of dysautonomia.

For many people with dysautonomia, the most noticeable symptom are the sharp drops in blood pressure, chronic pain (migraines, “coat hanger” headaches, chest pain, abdominal pain, muscle pain, joint pain, nerve pain, etc.) and the sudden fluctuations in heart rate and/or blood pressure. This causes dizziness (often extreme) and syncope. It affects more than 70 million people worldwide and while it can be treated, there is no cure.

In my opinion, the most annoying part of this condition is having to constantly make sure that my heart isn’t beating too fast or too slow, as this can easily make me pass out. I also have to be very careful that my heart rate doesn’t go too fast during any kind of physical activity, as it can make me very sick. Despite everything I do to manage the symptoms of dysautonomia, which includes drinking at least 3-5 liters of water a day, consuming between 4000mg and 10000mg of sodium a day, taking the maximum amount of a low dose steroid called Florinef to help me retain salt and water, and a high dose of a medication called Midodrine to raise my blood pressure, it is still very much uncontrolled. Because I have both the tachycardia and the bradycardia, I am unable to take the beta blockers that many people take to control their POTS symptoms and currently, there is no FDA approved drug to treat POTS.

According to researchers at Vanderbilt University, Mayo Clinic, and the University of Toledo, dysautonomia has been compared to having COPD and congestive heart failure. Quality of life for patients with dysautonomia can be compared to patients in end-stage renal failure that require dialysis.

Because of the complexity of the case, I am on the waiting list to see Dr. Blair Grubb at the University of Toledo; one of the leading experts in dysautonomia who happens to have POTS himself.

I’ve only scratched the surface of what all dysautonomia entails. Please ask if you have any questions.

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