Dysautonomia Awareness Month

After a recent emergency room visit, it truly hit me in the face just how much no one knows about dysautonomia.  The paramedic mispronounced it several times. The emergency room physician had heard of it, but he asked me to inform him on how to treat it. While I am more than willing to educate my healthcare providers on my chronic illnesses, this needs to change.

October is Dysautonomia Awareness Month. Dysautonomia (also known as autonomic dysfunction or autonomic neuropathy) is 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. For many people with dysautonomia, the most noticeable symptom is the sharp drops in blood pressure and the sudden fluctuations in heart rate. 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. For many, it takes months or even years of searching for answers before a diagnosis is finally found. The proper diagnosis is critical to effective treatment, but many have problems just getting the doctors to understand that there is a very real problem occurring. There are several promising treatments on the horizon, but without awareness and funding, research is stalling.

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 type 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 and consuming 2000mg to 4000mg of sodium a day, it is still very much uncontrolled. By being careful and getting my daily salt and water intake, I get by one day at a time. I always have to try to be in control of a body that is already out of control. I only scratched the surface of what all dysautonomia entails, so I encourage you to check out these links and feel free to ask me any questions you may have. Together we will find an effective treatment and eventually a cure!




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