P.O.T.S. & Our Struggle

You may ask, “What is POTS?”  It’s an acronym for Postural Orthostatic Tachycardia Syndrome, a disorder of the autonomic nervous system.  This medical term was coined in 1993, however has been around for hundreds of years under other names.

Our world changed last August when our daughter, Sarah, (17 at the time) began experiencing seemingly random, debilitating symptoms.  Her symptoms began as daily migraines, feeling like she’d pass out, severe fatigue, sleep disturbances, joint pain, muscle twitches and g.i. issues.  They have now evolved into cardiac symptoms, such as heart palpitations and heart racing even when at rest, brain fog, memory issues, slower speech and being primarily home bound.

Before I go any further, let me back up the train to state what I think were contributing factors to our daughter contracting POTS.  If you’ve read my blog, you may recall our family was hit by a drunk driver back in May 2014.  We were involved in a traumatic 4 car accident at a red light and rear ended at about 70 mph.  We all endured four months of physical therapy subsequently.

Sarah had an appendectomy in February 2015 and then had all four wisdom teeth extracted in August 2015.  We also moved five states away and Sarah was under pressure to perform well on her ACT test.  It has been said that surgery and major stress on the body can be triggers.  I definitely believe this to be true.

She’d been seeing her primary care doctor regularly post appendectomy, primarily to address her raised white blood cell counts, who referred us to a hematologist to further investigate.  We saw the hematologist a number of times, who referred us to a neurologist concerning Sarah’s massive headaches.  During this time, she was tested for Leukemia, Lymphoma and other markers in the blood that may indicate disease.  I cannot tell you the intense stress our family endured waiting for the blood results when a hematologist is concerned about potentially deadly diseases for your child.  Our stress level was off the charts.  We are strong believers in God’s healing power and the fact that He walks beside us, but our faith was greatly tested and tried during these hours.  It wouldn’t be the last time either.

Praise the Lord, those tests came back negative!!  While we were greatly relieved, it still remained a mystery as to why Sarah’s white blood cell counts and lymphocytes were elevated beyond a normal range.  Our hearts and prayers go out to the parents whose children are battling cancer and other diseases.  It is the worst feeling in the world for your child to be sick and you can’t do anything to make him/her better.  But pray.  And pray we did.  Sarah is on so many prayer lists at so many churches.  Our friends and family have remained faithful in prayer on her behalf and for that, we are ever grateful.  We are convinced that it is due to their prayers that we were sustained during the darkest of hours.

In September 2015, the neurologist diagnosed Sarah with POTS and prescribed Florinef.  As with any new diagnosis, we were overwhelmed with questions.  So, we studied.  Between Sarah and I, I’m pretty sure we could write a small book.  Sarah is a bright girl and curious by nature, so she immersed herself in articles online.

The Florinef helped a great deal in the beginning, but by November and December, Sarah’s symptoms were worsening by the day it seemed.   I felt like I’d lost my baby girl.  Sarah turned 18 in November and could hardly make it out of bed for dinner.  This was our new reality.

She would have begun attending the community college in September 2015 but was not well enough to do so.  She wants to become a nurse, which I think suits her personality and gifts very well.  We’re looking forward to the day she can begin classes.

We switched primary care doctors after we received news that her former doctor was no longer participating with any insurance.  She saw the new PC in early November, who referred us to a GI doctor for her stomach issues as well as a cardiologist for the racing heart symptoms.  By now, our heads are just spinning because we’ve seen more doctors in 2015 than imaginable!

We saw the GI doctor who recommended a colonoscopy and upper endoscopy, so she had that done at the end of November.  The results were very good.

Side note:  Sarah eats a very clean diet and is very disciplined.  She’ll be the first to say not to applaud her too much on that note because she does so more so out of necessity than discipline.  She knows what upsets her stomach and which foods sit well and has learned over the years to adjust accordingly.  Sarah primarily drinks water and occasionally herbal tea.

We finally saw the cardiologist (took a while to get in with this pediatric cardiologist) last week.  I finally feel like we are on a good path!!  Praise the Lord for that!  Because Sarah’s symptoms revolve greatly around the tachycardia, I believe the cardiologist is in the best position to treat her at the moment.  He prescribed Atenolol (which, ironically, my father also takes…for other reasons, of course) to regulate her heart and after being on that for 6 days now, I have to say, it has helped greatly!  She is able to get out of the bed more and I feel like we’re getting our Sarah back.  It isn’t a miracle drug, however.  She still feels the extreme fatigue and other symptoms, but it has helped the tachycardia (rapid heart rate).

Sarah is still unable to do much of anything, aside from lay around and fix her meals.  Part of the treatment for POTS is to increase salt intake and water consumption.  So, she does that.  Even prior to the diagnosis, she drank a lot of water.  She drinks probably 2-3 times the amount she used to.  The reason for the larger salt intake is it helps to increase blood volume and blood pressure, which aids in treating the symptoms.  The underlying issue with POTS is lack of blood flow, which is why she often feels like she will pass out.  (lack of blood flow to the brain)  This is also why she feels so poorly after eating.  Apparently, after you eat, your system is hard at work digesting and diverts extra blood flow to the digestive system.  This is terrible for POTS patients as they need all the blood flow they can get under normal circumstances.  Sarah would have to promptly lay down after eating and fight not to pass out.  As if the symptoms could not worsen, a woman’s monthly cycle exacerbates  the situation.  Again, it all goes back to blood flow and its affects on the entire body.

Because POTS is a disease of the autonomic nervous system, it affects all the body’s systems one cannot control, such as: sleep, heart rate, digestion, respiratory, etc.  In the beginning, we questioned how Sarah could be experiencing the myriad of symptoms she was.  I must admit, I often thought she was a hypochondriac and we tired of hearing about all of her woes.  What a blessing it was to receive the diagnosis, so then we could work toward treatment and hopefully her full recovery one day.  We have heard that others with this illness go undiagnosed for years and that is heartbreaking.

Where are we now?

The cardiologist referred Sarah for physical therapy, which was a godsend!  Physical exercise is very useful.  Strengthening of abdominal and leg muscles is beneficial to the POTS patient because it helps the body effectively and efficiently pump blood upward toward the brain.

Sarah begins meeting with a sports therapist this week and we will keep you posted.  Sadly, she strained her wrist while exercising last week and has it wrapped in an ace bandage, applies Arnicare gel regularly and soaks it in Epsom salt.  Hopefully, she’ll be okay to do the therapy.

One of Sarah’s POTS’ symptoms is “exercise intolerance” and that means that if she exercises, it can wipe her out for days afterward.  It’s awful.  Even a short walk exhausts her for days.  So, the idea with the therapy is to build her tolerance slowly.

I plan on writing further about POTS and how Sarah is doing, so check back for updates if you’d like.  Do you know anyone with POTS?  They say over 500,000 Americans have it.  Not sure how accurate that really is since often it goes undiagnosed.  Many doctors have no clue as to what it is.  How can one expect a diagnosis if they have no knowledge of it?

We covet your prayers for Sarah – that the Lord will touch her body and restore her health.

We know God has great, big plans for her!

 

{Medical Disclaimer:  I am not a doctor.  I don’t even play one on t.v.  I am a mom.  A very loving and dedicated one at that.  The information contained in this blog and any other article on my page are based on our experiences, what we’ve read and our opinions or understanding of POTS.  Please consult a licensed physician for advice and conduct extensive research on your own.}

 

 

 

 

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