My Life with Chronic Illness Part II

As far back as I can remember, I knew something wasn’t quite right with me. I was a normal kid and teenager in most ways; it was just little things. I couldn’t go without eating very long without feeling sick and light-headed. I passed out cold once when I was eight or nine—right in front of my mom—then again when I was fifteen or so. I got dizzy easily as well. At amusement parks I couldn’t ride anything that spun in circles—not even a merry-go-round—without throwing up. There were other things, but they’re not worth going into here.

When I was twenty-six, I was working as an assistant store manager for The Home Depot. I was sitting at a big table in a staff meeting one morning with the rest of the management team when I began feeling extremely dizzy and short of breath. I excused myself and walked down the hall to the bathroom. The next thing I knew, I was waking up on the floor. I went home early. For the next week or so I felt light-headed and ill. Dizzy spells came and went as well. I took several days off work. I didn’t pass out again, however, and eventually I started feeling better and things returned to normal. A couple of months later I had a similar episode. This time I was at home and I didn’t pass out. The episode lasted for more than two weeks though. I was incredibly weak and light-headed. It convinced me to see a doctor.

By the time I got in to see my doctor, I was feeling better again. He was very concerned and ran a battery of tests: blood work, ekg, echocardiogram. He found that I had a mitral valve prolapse (a heart valve abnormality that is benign in the majority of people who have it) but nothing more than that. I’d like to note here that I later found out there has been some clinical evidence that mitral valve prolapse often accompanies dysautonomia. In the end he gave me a perfect bill of health and told me to return if I experienced symptoms again.

That was the beginning of my twenty-some-odd years of searching for answers.

Although there were remissions, over the coming years my episodes slowly became more frequent, more severe, and longer lasting. Sometimes I would spend the better part of a month mostly in bed. The malaise and fatigue I felt during these times (and still do) is indescribable. My life began to become unmanageable. Other symptoms arose: my ears rang ceaselessly, the left arm and the left side of my face would go numb for entire days. Several times I awoke to find myself in an ambulance. I always recovered though. That is until about 2009. By that time my symptoms were always present, only at different levels of intensity.

I saw doctors. Countless doctors. Specialists. I was tested for everything from multiple sclerosis to Lyme disease. Every path was a dead end. There were, however, occasional blips on the radar. An ER doctor once observed that my blood pressure dropped over 25 points between sitting and standing. My electrolytes were almost always off. I had transient heart arrhythmia. There were other small clues that no one ever put together.

Finally my doctor wanted me to go on anti-depressants. His logic was that if he and his team couldn’t find something wrong with me, then it must be in my head. He was right about one thing: by that time I was pretty depressed. I refused the medication though. I knew in my heart that it was something else.

By 2010 I was really sick. I’d developed ulcerative colitis along the way and it exasperated my other (still undiagnosed) condition. I couldn’t get doctors to listen to me anymore. They treated my colitis but ignored my other complaints. In late 2010 I split my head open and received a concussion when I passed out while putting groceries in my truck. Bystanders called an ambulance. The hospital doctor was the most condescending human being I’ve ever met. In his final report, he wrote: the colitis not withstanding, I believe this is an extremely depressed individual who is seeking attention through an imaginary illness. Professional opinion: Somatoform

I was through being humiliated. As sick as I was, I became my own advocate. I did exhaustive internet searches and discovered that some autonomic disorders could cause just the symptoms I suffered with. I found a new doctor and convinced him to send me to an electrophysiologist for a tilt-table test. It was a tough sell because he wanted to attribute all of my failing health to my colitis. To his credit, he finally relented. In a tilt table test, you are strapped to a motorized table which slowly goes from horizontal to vertical (like in the classic Frankenstein film). Your blood pressure and heart rate are monitored for changes during the test. Normally, the test lasts from five to forty-five minutes. If there are no significant changes in your vitals within forty-five minutes, the test is negative. Mine lasted less than one minute. Before the table was even all of the way vertical, my heart rate and blood pressure both (dangerously) bottomed out. I immediately passed out. The medical team had to use an electric pacer machine to bring my heart back up to a normal rate. The electrophysiologist admitted to me later that it was the most remarkable tilt-table response he’d ever seen. I was later sent to a cardiologist for a stress test; a test I’d had once before with normal results. This time the results were anything but normal. During this test you walk on a treadmill which slowly increases it’s speed and incline. Your heart and blood pressure are monitored during the test. This test was also remarkable. My resting blood pressure, and my blood pressure at peak exercise, were virtually identical.

I was diagnosed with autonomic dysfunction.

I have to admit that to this day I still have to battle with bitterness toward some of the doctors I visited over the years. It’s unfortunate, because it’s not really in my nature to hold grudges. I remained undiagnosed for over two decades though. In the end I was able to figure out what was wrong with me on the internet. Go figure.

Find a good doctor, but be your own advocate.

 

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Comments

  1. Mischenko

    Thank goodness you finally received a diagnosis after all that. It’s been my experience that more often than not, doctors want to blame everything on mental illness, especially when they can’t figure out what’s wrong with a person. The doctor you had was one of the worst I’ve heard of though. To say that you are looking for attention…that really angers me. What’s wrong with people?

    Being your own patient advocate is key like you say. It’s hard to find a doctor who’s willing to listen. I’ve pretty much become my own doctor whenever possible because I’ve realized that nobody is going to help me but myself. I’m trying to manage my body holistically and so far I’m better off. After seeing countless doctors, I developed medical PTSD, and going to the doctor just makes me a nervous wreck because of the lack of trust I have in them.

    I really hope your posts will help others with your condition. Good luck moving forward.

    1. michaelamclellan Post
      Author
      michaelamclellan

      It’s definitely a tough go for people with conditions that aren’t yet widely understood by the medical community. I’ve run into a few docs along the way who will admit that there are vast numbers of illnesses they just don’t have names or diagnosis criteria for yet. My daughter, who also has autonomic dysfunction, saw a rheumatologist at Stanford who diagnosed her with an “unspecified connective tissue disorder” because what she (the rheumatologist) was seeing didn’t fit neatly into a specific diagnosis criteria though she admitted there was an issue that closely resembled other named diseases.
      I understand the PTSD, and you’re smart for being your own best advocate. I rarely see docs anymore, and I don’t take one med. I’ve found that most of the drugs do more harm than good. Healthy eating, probiotics, etc… seem to do the most good.
      Hang in there. Always here to talk.

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