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  • The Member Stories section of our site is a place where members can submit the stories of their experiences as a person living with dysautonomia.  We also link to member stories that have appeared in our newsletter.  Please note that Member Stories are not edited by DINET and the views and beliefs expressed in the articles are strictly the views of the member.   Please note that the stories submitted are reviewed for content and should follow the guidelines of the site.  We do our best to publish each story submitted,  but publication is at DINET's discretion. If you would like to submit your story, please write to webmaster@dinet.org - include "member story" in the subject line. 

No, Your Machine Is Not Broken, My Heart's Really Beating That Fast


By Lauren Mitchell
October 2005

It began suddenly. I had the summer off from school and had begun riding horses regularly at a nearby stable.  I was jumping a course when all of a sudden I felt like I couldn't breathe.  My heart was racing, and I felt dizzy.  I hopped off my horse, sat down in the shade and drank a bottle of Gatorade.  After a few minutes of sitting down, I felt a little better, so I untacked and went home.  I assumed it was dehydration and decided to drink more before I went riding again.

On the drive home from the barn, the dizziness returned.  There were times I thought I was going to pass out at the wheel.  When I got back to my apartment, I took a quick shower and went to bed.  The next day I called my doctor.

By the time I saw him the next week, I'd already started having these "attacks" several times a day.  I'd quit riding, quit smoking and developed an aversion to caffeine, sugars and dairy products.  I'd also lost five pounds.  He did an EKG (I’d also begun having heart palpitations).  He decided after listening to my story that I was having panic attacks and referred me to a psychiatrist.  The psychiatrist put me on Xanax. This made things much worse.  Whenever my heart raced, I would take a Xanax, but the pills made me feel dizzier and more out of breath.  I was unable to get out of bed for the week I was on the pills.  I called my doctor and explained what was happening, and we decided to stop the Xanax.

School started the next week.  I resolved that whatever was going on would just have to wait and decided to pick up a large course load.  I was standing in line at the bookstore when I had another "attack."  I decided to ignore it just to see how bad it would get.  My heart was racing, I was panting, then the room went gray and I fell.  A friend convinced me to go to the campus clinic to see a doctor, so we walked together.  The whole time my head was pounding, and I felt like my heart was going to beat out of my chest.

The campus doctor did a blood pressure series and discovered that when I was lying down, my pulse was in the 50's and my BP was in the 120's.  When I sat, my pulse went up into the 80's and my BP dropped to the low 100's.  When I stood for a few minutes, my pulse would soar to the 140's and my BP would drop to the 80's.  He told me that he didn't know what was going on, but that I needed to go home and get some rest and to make an appointment with a cardiologist and an endocrinologist.

I drove home, and things became much worse.  I fell while walking from my car to my front door and again when I was walking to my bedroom.  The second time, I was unable to get up off the floor for nearly twenty minutes.  I called the campus doctor back, and he told me to call 911.  I was admitted to the hospital and spent a week in the cardiac ward.  I had a cat-scan of my chest, several EKG's, a holter monitor, and so much blood work that I began to look like a junkie; but everything kept coming back relatively normal.  I did have a pronounced sinus arrhythmia and PACs (premature arterial complexes), but those weren't the cause of all this trouble. The only evidence I was sick at all was my plummeting BP and soaring heartbeat. I was eventually sent home by the stumped doctors and told to "take it easy."

I had to wait another month before anyone ventured a diagnosis.  By this point, I was almost completely bedridden and had lost nearly twenty pounds.  (I went from weighing around 130 to 112.)  Finally, I went to see an electro physiologist who told me I have orthostatic intolerance (which anyone could have guessed). He also told me to eat more salt and drink more fluids.

Now, a month after the "diagnosis," I've learned coping mechanisms on my own to make this thing more manageable.  I've cut down to three classes, and try to stay in bed most of the time with my legs propped up (the way you posture someone who is in shock).  I try to eat 10 grams of salt a day and try to drink no less than 1 1/2 liters of water a day.  When I do get out of bed, I sit for five minutes before standing, and have begun using a cane to help me keep my balance.  If I'm able to go to class, I've learned that sitting with my knees to my chest (fetal position) helps with the dizziness, and if I sit like that, I can usually make it through an entire lecture.  I've completely cut sugars, caffeine, and dairy out of my diet, which seems to help.

The doctors still don't know what to do with me.  And I'm still looking for someone who will try to treat this, rather than scratch their head at it.  I think that's been the most frustrating aspect of my illness: no one knows how to help or even what's causing this.  They just shake their heads and refer me to another specialist.

Before getting sick, I operated under the naive assumption that doctors cure illness. Now I know that they cure some illness, but there's a vast sea of information about the human body and its workings that they don't know. This website has helped me immensely though.  I know now that I'm not alone, that this happens to other people. This makes it easier to live with OI.   By taking things one day at a time, I feel as though my life is tolerable, although far from perfect.

Note: I live in the Honolulu area, so if anyone knows a doctor who has experience with POTS or OI who doesn't require a plane ride to go see, please email me at laurenem@hawaii.edu  Thanks.

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