Is it just me? My Life with Postural Orthostatic Tachycardia


1985

When I was six months old I began to throw up and continued to do so until I became non-responsive.  I was dehydrated.  They admitted me to the hospital and said I’d be out in 24 hours… when my heart rate came back down.  It never really did, so they released me from the hospital with a resting heart rate of 160bpm.  Doctors didn’t want my heart-rate to go above 200, so they told my parents to keep me “relatively calm.”  My mom worried when I cried, because my heart-rate increased.  Lucky for her, and much thanks to her answered prayers for my crying to stop, I became what they called a “self monitor.”

Sus says, “At times, as a toddler, you would be playing and then just lay down and fall asleep.”

1995

During gym class at school, in Wyoming in March, which is still very much winter, they take my class outside to run the mile.  I quickly realize, as I often do, that there is little to gain by hurrying… so I take my time.  I finish with bright red cheeks that don’t fade until long after school finishes for the day.

1996

It’s spring in Idaho Falls and my class is taken outside to run the mile.  As a competitive gymnast who spent enough time in the gym to call it a nearly-full-time job, I was annoyed.  I got plenty of exercise. And I knew that, for those who didn’t, this sort of stunt was not going to inspire them to begin to.  Anyway, I remembered every bit of the horror that was running the year before… so I took my time… again.  Only to end up red as a holly berry (note festive reference) and burning to the touch.  Generic grade school teacher expresses concern, and I swear up one side and down the other… this is, in fact, normal.  For me.  So, leave me alone.  Actually, no.  I didn’t say that.  I was a very respectful pupil.  I promise.

1997

It is again spring in Idaho Falls, but it is by no means warm.  My junior high gym instructors (Are they teachers? coaches?   babysitters?) take the class outside to run the beloved mile… around the track… in the frigid cold.  After one lap I remember… there is nothing to gain in running/freezing my face off… so I take my time… yet again.  I’m pretty sure I walked the rest of the way.  I think.  But all I really remember is seeing my breath and the frost on the goal posts and Ms. Schultz screaming for us to hurry. My heart was beating so hard I couldn’t hear her.

Life goes on.  We move to Arkansas.  I grow up.  And graduate from high school.

2003

I see stars when I get out of bed, stand up from a chair, or bend over.  I notice my heart rate seems to grow more powerful and/or more rapid when I see stars.  I grow short-of-breathe when my heart rate increases.  I lose energy when I grow short-of-breath.  I visit my family doctor, who after various tests diagnoses me with Postural Orthostatic Tachycardia Syndrome (POTS).  He gives me a few tips for reducing the chance of fainting, seeing stars, and tinnitus and that’s that.

Summer ends.  I return to school.  I learn stuff.  And meet my husband.

2005

I’m home for the summer.  A friend is living with us, on and off, I’m house-sitting for a few families, work has me traveling the country, and my POTS flares up.  Talk about inconvenient timing.  My doctor refers me to a cardiologist in the area and after another round of EKGs, echocardiograms, and blood tests, I am diagnosed with Supraventricular Tachycardia.  Basically, in construction terms (which I went to school to understand), he says I have two wires telling my heart when to beat.  And, normally the signal only goes through one, but every so often the signal starts going through both wires… and my heart beats nearly twice as often.  There’s a lot more to it, but you get the concept.  They determine that at my age (20, at the time), the risks of treatment far outweigh the benefits, and nothing is said (besides what I hear every time I go the doctor*) or done.

Summer ends.  I return to school.  Get engaged.  And get married at Christmas.

2007

It’s winter semester and I am preparing to graduate from college.  My husband is applying to graduate schools, I am looking for a job, and we have no idea where we will be living in six months.  I take a nasty fall down the stairs in our apartment and go into the doctor to discuss my concussion.  While I’m there, I ‘fess up.  My heart rate has been all over the map.  My POTS or SVT or whatevertheheck it is is interfering with my schooling and I’d really like to get my energy back.  Our family doctor out at school refers me to the hospital where they assign me a heart monitor, which I wear for over a month.  Lucky for me, the foremost doctor for repairing my cause of SVT works at the hospital just down the street from my university.  Unlucky for me, or lucky for me, it is again determined the risks of treatment (sticking something through a vein in my calf, up to my heart and burning the “extra wire”) outweigh the benefits.  It is also determined that’s a good thing… my symptoms are not as bad as they could be.

I graduate.  We go to Aunt Linda’s in Mexico.  Move to Arkansas.  And start working for a living…

2009

Later this week…

*Wondering what I hear every time I go to the doctor?  Guess.  Or tell me what YOU hear every time you go to the doctor.  My answer to follow in the coming days.

5 Responses

  • Rochelle on November 17, 2009, 22:33:37

    “It’s all in your head”

    Ughhh. Sorry to hear you’re dealing with this! I have a bloggy friend whose son was born with it, it was really severe, and he had an ablation which likely saved his life. hope yours gets sorted out soon. I know what works for one doesn’t work for everyone. best wishes!

    Reply to Rochelle
  • KatherineBee on November 19, 2009, 11:00:39

    I was just diagnosed, but now that I know the signs and symptoms I’m so upset I didn’t know earlier. I “greyed out” this morning and was on the bathroon floor until my husband came to get me. It’s a real thing and it’s a scary thing and when people don’t know about it it’s super frustrating. Hope your doctor’s appt. goes well!

    Reply to KatherineBee
  • Benia Zouras on November 21, 2009, 21:19:35

    I had an atrial tachycardia episode that lasted several hours when I was 17. I went to the ER after my entire family couldn’t slow down my heart rate with a doctor over the phone. Afterwards, I saw a cardiologist who did an ultrasound and determined that my heart is fine. He told me that some folks are just born with this tendency and to avoid caffeine.

    I’d had a handful of major episodes (hours-long) since then and have not been hospitalized for any of them. Other, seconds-long or minutes-long episodes have also occurred here and there, but not with any regular frequency. My primary care doctor had an EKG done – again, everything looked fine.

    Just this year, while in the ER for unknown breathing problems, a stress test was administered, and another heart ultrasound was performed. I was told everything looked fine. (There was no conclusion about my breathing problems, by the way.)

    Just a few days ago, I had another one of those heart-pounding, hours-long episodes. I patiently waited for it to subside, while I tried to enjoy my dinner at a restaurant, then go home and retire for bed. At bedtime, I was still concerned, but really had no plan of action. I spent most of the night in discomfort and increasing pain in my left shoulder. I had determined that if my heart rhythm didn’t return to normal by morning, I would head to the ER. Somewhere around 4 or 5 am, it finally returned to normal, though I continued to feel “odd” for the whole day.

    I am planning on seeing a cardiologist, just to make sure I don’t have any serious problems or at least so I know what to do the next time (and when). I also suspect POTS, but have never been tested. I expect, however, the same old song and dance of “everything’s fine”. (Sigh…)

    You’re not alone. It is frustrating.

    Reply to Benia
  • Kate Blaylock on November 22, 2009, 19:58:07

    Rochelle, I am glad they were able to help him.

    Katherine, I hate to say welcome to the club. Have you found anything that helps you through episodes? Be sure to keep in touch.

    Benia, thank you for sharing your experience. Let me know how your trip to the cardiologist goes. Hopefully they are able to help you get comfortable.

    As always, I will keep everyone posted on what works for me. I am grateful to have POTS friends to reach out to.

    Reply to Kate
  • Nadine on January 26, 2010, 13:54:14

    Let me guess……”It should resolve on it’s own in a few days. Take it easy and call if it gets worse.?” This is often the response I got from doctors as well as friends that did not understand the ramifications of their words. (((HUGS)))

    Reply to Nadine

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