Life With Dysautonomia: Miss Amy’s Story, Part 1

Hello there!

My name is Amy. My friends call me Miss Amy. I’m 42 years old and I have a 21-year-old son who also shares the same diagnosis as me. Originally from Oklahoma, I’m now living in Amarillo, Texas.

I grew up in a military family. If you know anything about those who grow up in this environment, you know that we are adaptable. I love change. I thrive on it and always look forward to a new challenge. I’m the type of person who fixes things, a perfectionist. I was always searching for ways to improve my work, parenting, finances etc. Stubborn. Unstoppable. Nothing could set me back– or so I thought.

In 2015, my son became very ill with a mystery illness that no doctor that we visited over a period of two years could diagnose or treat. After spending hundreds of hours researching, looking for an answer, I finally thought I was onto something. I read an online article about a singer, Solange Knowles. She was suffering from a condition that was not well known. The condition was called ‘dysautonomia.’ Dysautonomia is a dysfunction of the autonomic nervous system. I forwarded a link of the article to my son. No response. This was not unusual, as he had grown tired of me going down rabbit holes looking for an answer.

Several months later, we found ourselves in a cardiologist’s office at the request of a local hospital. My son had experienced several instances of SVT while being monitored. The TV screen in the waiting area was advertising different medications for various conditions. My son said “Mom, watch the screen. I think this is what I have.”

POTS

After so much prior research and countless dead ends, we both knew not to get our hopes up. We began researching online the terms ‘dysautonomia,’ and ‘POTS,’ trying to find out to which far off location we would need to travel for a consultation. My son had already been to two nationally known clinics and we were told that the illness was ‘psychosomatic.’ We had one doctor flat out tell us he was making it up for attention.  My son had graduated high school a year early and was in the process of selecting which college to attend when this hit out of nowhere. There was no way he was making symptoms up for attention.

On the internet were videos of a doctor giving a lecture about dysautonomia. We typed the doctors name into the search bar to learn more. The doctor was from OUR town! There are not many doctors that are knowledgeable about this illness and the odds were stacked against us of finding one within driving distance. This was our saving grace.

When my sons ‘dysautonomia – postural orthostatic tachycardia syndrome’ diagnosis was confirmed, I began remembering that my mother suffered from similar symptoms. She frequently regurgitated food, frequently vomited, was fatigued, suffered from insomnia, brain fog, memory loss, and anxiety. She’s no longer with us as she passed away in 2004. The evening prior to her passing, she spoke about a throbbing pain in her leg and wasn’t feeling well so she went to bed early. She did not wake up. She was 51. This got me to thinking there may be a family connection with all of our symptoms.

Prior to this last year, I was very active and physically fit. I visited the gym almost daily, practiced yoga, and enjoyed hiking at the nearby canyon. I enjoyed working in Human Resources for over 20 years. I also loved to read. That is until the brain fog and lack of concentration decided to infiltrate my brain. I was once socially active with friends, enjoyed girls’ nights out, trying new restaurants, and traveling. I was bursting with energy and kept myself busy.

My Symptoms

The ‘urge to flee’ kicked in during my twenties. Now, I know this is the permanent fight or flight mechanism that so many others with dysautonomia suffer from. Apparently, I run away. Any minor uncomfortable situation or conflict and I would promptly remove myself. When I felt anxiety or adrenaline, my chest would break out into hives and the flight (or in my case…RUN!) response followed. I could be in a dressing room, in line for coffee, or planning to meet friends for dinner; the circumstances varied. But when that feeling kicked in, I had to book it to my safe space. My home.

Working in Human Resources, I was often required to sit for long periods and my rear end hurt to sit on. It seems like a minor complaint; however, I now know the familiar pain was caused by blood pooling and poor circulation.

I started experiencing neck, shoulder and back pain. Excruciating. The pain caused anxiety. Or anxiety caused the pain. I wasn’t quite sure which way it occurred, but they went hand in hand. The pain could last days, weeks, or months. There was no rhyme or reason for this. I visited a chiropractor regularly for years because I have scoliosis and although we worked to align my spine, it didn’t reduce the pain and anxiety that I was feeling. Now I know that these systems were caused by fibromyalgia. Being in pain all the time is exhausting!

This brings me to the insomnia. Oy vey! Not being able to sleep while working and raising a child did not fare well for me. Often, I could count the hours of sleep I got each week using both hands. Insomnia is the worst.

I was not one who complained often about how my body felt. What I felt was normal for me. When I did seek medical care, I was told that I suffered from anxiety or depression. I could live with the labels, but no prescription or amount of counseling seemed to ease all the ailments that were affecting me. I put on a happy face because that’s all I knew how to do. Yet, underneath, I was in physical pain, tired, and looked forward to the days ending so I could rest and be alone.

I found solace in the bath tub. Hours upon hours, each evening I would read, balance my checkbook, make to-do lists and just clear my head and mentally prepare for the next day. I would drain the water and refill with hot water over and over. The bath tub was my place of solitude and the hot water provided relief to my aching body.


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