I have Dysautonomia, which basically involves a malfunction of the autonomic nervous system. The sympathetic nervous systems remains in a state of flight. This system is meant to function in an emergency situation (such as being attacked by a predator). Ultimately, the adrenaline from the constant flight causes the rapid heart rate and other symptoms to occur.

We have been told that a possible cause for this is due to traumatic experiences on my body.  Examples include Graves’ Disease, my thyroid surgery, and heart ablation.  Any surgery can be traumatic on the body which can cause this.  I may have even been born with POTS (Postural Orthostatic Tachycardia Syndrome).  The surgeries and Graves’ disease were most likely what triggered the autonomic dysfunction.  My heritage also plays a role.  I am Scotch-Irish, blonde, tall, and lean.  These are common characteristics of POTS.  That being said, I was more than likely born with this condition and it lay dormant until after my operations.

Symptoms

I experience the following symptoms everyday, sometimes all at the same time. Many occur at once, causing a “storm.”  Extreme fatigue makes day-to-day functioning and activities extremely difficult.  Exercise intolerance occurs, no matter how conditioned I am or the type of exercise I participate in. While exercising, I often feel a burning sensation throughout my body. On many occasions, I deal with light-headedness and dizziness and experience nausea almost all day, everyday.  Gastrointestinal problems occur due to blood having difficulty going to the necessary location in the intestinal area. This causes upset stomach and nausea. I have migraines every 2 weeks for 3 straight days, and medicines  do not alleviate them.  Additional symptoms consist of frequent chest pains, heat intolerance, tunnel vision, visual disturbances, heart palpitations, tachycardia (fast heart rate),  stiff neck, tremors,  weakness,  poor memory, insomnia, itchiness, restless legs, and tingling all over my body throughout the night. POTS disease also encompasses mood swings and shortness of breath while talking, moving, exercising, and sitting.   The symptoms I experience are life-altering and debilitating.  The severity of my symptoms will vary from day-to-day, and there is nothing I can do to prevent a bad day symptom-wise.

Activities that can worsen my symptoms or cause “storms”  include exercise, heat, housework, bending over and coming back up, climbing stairs, bathing (due to hot water and standing), anesthesia, blowing out a lot of air at a time such as blowing up balloons, certain foods (some of mine include sugar replacements and reduced fat/fat free foods),  dehydration, eating large meals, energy drinks, giving blood (due to complications with blood pooling and difficulty transferring blood to all the organs of my body), holding my arms over my head, and lifting objects. Many medications also bring on symptoms/”storms”, including generic medicines and several over-the-counter medicines.  These also tend to worsen symptoms: over-stimulating environments, such as stores or places with bright lights, loud noises, and busy or crowded places, singing, stress in general, especially surgery, pregnancy, child birth, and travel.

Long-term Outlook

Some people have POTS their entire lives. The doctors are not sure if I acquired this from my past operations, or I was born with it.  That being said, I may have this the rest of my life not knowing what brought it on. I have read that patients with POTS have a quality of life similar to a patient living with Congestive Heart Failure. Some people with POTS are unable to work due to severity of their symptoms. Most patients including me have to make lifestyle adjustments to live a “new normal” to cope with this disorder. POTS can be hereditary. When a patient with POTS is being treated, the medicines will not cure them, but help them cope with symptoms.

For more information:

Dysautonomia Information Network
Dysautonmia Youth Network of America
Information About Dysautonomia