Your Mobile Phone as a Tool

As I learn to cope with POTS, I find that it helps to let someone else do the reminding for me.  Taking different medications throughout the day presents a challenge, and tracking blood pressure presents another one.  And what if you are caught in an emergency situation – let’s say you were out at a picnic and had a little more direct sunlight than intended – and you feel faint and your heart pounding, like you’re about to pass out?  It would be good to have your emergency instructions and contacts in one place where you would have it close by at all times.  My mobile phone has turned into a valuable tool to help me manage and store this information and I feel I’ve just scratched the surface.

Apps to try (for Android):

In Case of Emergency

Blood Pressure Trackers

Heart Rate Counters

Pill Reminders

I will be updating this list as new apps and tools are discovered.  Have you tried an app that has made your POTS management easier?  Please share ones that have worked for you below.

Heat – Enemy #1

Coming into POTS, there were several aspects of my care I had to learn to manage.  This syndrome teaches you, by trial and error, how to balance what your autonomic nervous system can no longer balance on its own.  This year, the summer in Southern California  was a late summer marked by record-breaking temperatures and humidity to match.  Before the heat hit mid-July, my POTS symptoms were so serene and undetectable that I was only reminded of POTS when I pulled a pill out of my pillcase.  Mid-July to now (the temperature records continue to be broken), I have had significant flare-ups and had to quickly get on board with hydration, electrolyte balance, and temperature-reducing gear.

When exposed to heat, the body’s blood vessels dilate and in POTS patients this dilation is exaggerated and can initiate the cascade of symptoms leading to tachycardia and in extreme cases, syncope.  The bodies of POTS patients have lost their ability to regulate heat properly so POTS patients must take key measures to help it regulate itself.

Although I was drinking the requisite 2 liters of water per day, my salt intake was variable.  I had a difficult time measuring and adding salt to my food meal after meal – even though I love salt. I tired of the saltiness after a while and slowly my salt additions dwindled.  After the heat spike, I tried to strike a balance between adding salt to my food and taking salt caps.  I also got some clearer guidelines for salt intake so I upped my salt intake by about 1,000mg between sea salt and salt caps per day.  Now, this made my body retain the water I was drinking more effectively and as the heat grew relentless, I added a full liter of water daily without even noticing it.  This improved my symptoms dramatically and I experienced a period of serenity once again despite the heat and humidity.  Then we had a dip in temperatures…and then a spike again and my symptoms returned very dramatically which taught me that even though I can do everything right, this syndrome can still be a roller coaster ride.  Regardless, protecting yourself against heat is critical.

Travelling with adequate water, salt, and cooling products (in my case, a large gel ice pack) is key even for short journeys out in the heat.  Plan ahead and avoid heat altogether when you can – I found that any temperature beyond 85 degrees Fahrenheit was intolerable.  Even hopping into a hot car waiting for the air conditioning to turn on could bring on symptoms.  This is from a girl who was raised in Sacramento and did long distance running in the 100+ degree weather every Fall year after year.  I hardly thought about weather before POTS!

Key Takeaways:

  • Heat can lead to serious symptom flare-ups and put you into a heat exhaustion state if you are not adequately prepared;
  • Hydration with water (in my case 2-3 liters per day) and electrolytes (salt) is a daily must but in hot weather it must be increased;
  • Plan ahead and avoid heat altogether when you can;
  • When you can’t avoid heat, always travel with adequate water, salt, and a cooling product (even cooling vests sound like a good investment);
  • Even for the most hydrated, electrolyte-d, ice-packed POTS patient, heat exposure can still bring about symptoms – fluctuations in symptoms are the nature of the syndrome.

 

Postural Orthostatic Tachycardia Syndrome (POTS) – The Invisible Illness

Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia, a disorder of the autonomic nervous system, that affects blood pressure which in turn makes it difficult or impossible for people to maintain normal heart rate when they stand upright.  Because most symptoms of POTS are not usually visible (except if the person faints which does not happen to a majority of patients), and the fact that you will not likely see a POTS patient on a bad day, POTS can indeed be referred to as an, “Invisible Illness”.

“But You Look Just Fine”

Most of the symptoms of a POTS episode are simply invisible.  In fact, all or most POTS patients have heard a well-meaning person say to them while suffering an episode (me included), “But you look just fine.”  During an episode, I experience an overall feeling of malaise and many systems being affected by the autonomic nervous system dysregulation simultaneously. Limbs will grow very cold, muscles in my upper body will grow tense and weak at the same time, my heart will begin to race.  On the exterior, I really do look fine; maybe a little tired, but there are no obvious external signs as to something going wrong inside.  POTS patients struggle with maintaining credibility with those around them, or feel that their credibility can be called into question.

I Become Invisible

It is rare that you will see me on a bad day because a POTS flare-up or episode can require me to rest at home with my legs elevated.  This can limit my ability to run errands, attend functions, or make dinner.  Not to overuse the term, but even I become invisible during my most trying moments with POTS except to my loving family with me at home.  During moments of remission, I’m out and about.  I can plan a birthday party, attend parties, go shopping, do step aerobics, take a hike, attend a concert, and take a short weekend trip away (of course not all at once).  Therefore, you will only see me on a good day – when the POTS is fully-controlled or away.

Why the Invisible Illness Blog?

Through sharing my story with POTS, I aim to make POTS less invisible.  To survive POTS, you need the support of those around you – not only by qualified medical professionals – but your family, friends and colleagues. My mission is to provide a resource for other POTS Survivors and the people in their lives so that they know they are not alone in dealing with this.  I invite you to share your questions and experiences here on this site.  If we combine our efforts, we can raise awareness of this disorder, and improve the quality of our lives and others with compassion and credible information.

Please note: no content on this website should be treated as medical advice or be used for diagnosis.  POTS affects patients differently, and the severity can be across a wide spectrum.  POTS is a serious medical condition that requires thorough evaluation and diagnosis by a licensed physician.