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Living With Chronic Orthostatic Intolerance

Updated on April 23, 2016

How Does OI Feel?

I was playing outside the first time I noticed the symptoms. The world seemed to spin in a long, slow circle around me. Noises that had been normal and close were muffled as if I had dunked my head underwater. Walking the few steps to my mother, my legs felt heavy and didn't want to move. I told my mother I felt sick. Before I heard her response, my vision grew dark on the edges, and then I went blind.

I woke up on the ground. Two men I didn't know stood over me. I was wearing a mask over my face. My clothes were soaked through with perspiration. One of the men pointed at my mother and asked me if I knew who she was. When I opened my mouth to answer, they told me not to speak. They carried me into the back of an ambulance, and my mother came in as well. There were tears on her face but she was smiling. She held my hand and told me that we were in an ambulance, which was really cool because it meant we could drive through red lights.

I was three years old.

By the time we got to the hospital, I felt fine. They weren't letting me sit up, but I wanted to. When the doctors checked me over, they couldn't find anything wrong with me. They told my mother I'd probably gotten a little dehydrated and not to worry.

As the years went on, this became common. I would pass out a few times a year, but by the time we got to a doctor, I was always fine. Eventually we stopped going to the doctor, knowing they wouldn't be able to find anything wrong with me. I wasn't diagnosed until I was thirteen years old.

Source

What is Orthostatic Intolerance?

Stories like the one above are not uncommon with Orthostatic Intolerance, which is caused by a quick drop in blood pressure which typically occurs when a person stands up. Other triggers can include:

  • Climbing a Flight of Stairs
  • Running
  • Heat, or Sudden Changes in Temperature
  • Staying in the Same Position for Too Long
  • Dehydration
  • Stress

Most people have experienced some form of orthostatic intolerance. For example, standing up quickly after sitting for a long period of time can cause a feeling of "head rush" and in an extreme situation a person might pass out. This is called acute orthostatic intolerance. However, for people with chronic orthostatic intolerance, these situations occur a lot more often.

Treating Orthostatic Intolerance

The doctors told me to lay down whenever I felt dizzy. When I was fourteen years old, my family went on a Caribbean cruise. As I tried to get back onto the ship from a port, the combination of the Caribbean heat and the tight crowd made me dizzy. I began to lose my eyesight. I told my mom that I wasn't feeling well, and she told me to lie down right there. The guards didn't know what was happening and were concerned, as I lay down in the middle of the terminal, that my family was trying to distract them so that we could do something criminal.

Although Orthostatic Intolerance can be treated, and treatment options are relatively simple compared to those of a lot of chronic illnesses, the condition can still have a dramatic impact on a person's life.

Medications can help. Common medications include:

  • Fludrocortisone
  • Midodrine
  • Pyridoscimine

Your doctor can best help you determine if medication is right for you.

Changing behaviors can also help people with orthostatic intolerance better live full lives with the condition. Some tips include:

  • Drink plenty of water
  • Lie down when you feel dizzy
  • Keep your feet propped when you're sitting at a desk
  • When standing up, do so slowly
  • Exercise, but pay attention to your body when doing so
  • Communicate with friends and family about the best ways to handle things if you do pass out

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