Is it just me? My Life with Postural Orthostatic Tachycardia

Topics: Is it just me?, My Life

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.

Existing Comments

    Comment by Rochelle on November 17, 2009 @ 10:33 pm

    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!

    Comment by KatherineBee on November 19, 2009 @ 11:00 am

    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!

    Comment by Benia Zouras on November 21, 2009 @ 9:19 pm

    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.

    Comment by Kate Blaylock on November 22, 2009 @ 7:58 pm

    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.

    Comment by Nadine on January 26, 2010 @ 1:54 pm

    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)))

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