K’s story of living with POTS

Pre-POTS

Before POTS engulfed my life, I was an active stay at home mother.  I ran four to six miles a day followed by yoga or pilates.  I was athletic and played numerous sports in high school.  I then went college and majored in Psychology/Sociology.  I wanted to be a counselor.  Before going to grad school, I met my husband on a blind date and married him fifty-two days later.  Three months after marrying, I became pregnant (not on purpose).  I chose to be a stay at home mom.  I lived a normal healthy life.

POTS

I developed POTS while pregnant with my daughter, but was not formally diagnosed until eight years later. I was however diagnosed with tachycardia while pregnant.  I had to take a beta blocker (propranolol) because I was considered high risk for a stroke or heart attack. During my second trimester, I almost miscarried and was placed on bed rest.  I also took numerous trips to the ER.  To say the least, she was our miracle baby.

After my daughter was born, I noticed things were not going back to normal as they did with my first child.  I was lightheaded, had blood pressure drops upon standing, and general malaise.  But I was a new mother.  What mother isn’t completely exhausted with a newborn?  So, I shrugged it off wanting to enjoy my daughter. I titrated off of the beta blocker.  Because I was breastfeeding, I didn’t want to continue treatment if I could tolerate the tachycardia naturally.  I breastfed my daughter for nineteen months and when she weaned my body went crazy.

Suddenly, I was having major hot flashes, night sweats, mood swings, palpitations, low grade fevers, and weight gain.  I thought I was entering early menopause.   My primary care physician ordered blood work numerous times.   But the only cause for concern was a low white cell count.  It was then, he sent me to a specialist.  By this time my daughter was four and my symptoms were steadily worsening.  With great hope and anticipation, I was sent to a Rheumatologist at Duke.  Unfortunately, after numerous appointments, there was no progress. I found myself discouraged and exhausted so I took a short reprieve from searching for a diagnosis.I needed to gather my thoughts and prepare myself mentally to move forward.

I decided to make an appointment with an Internist who had helped my father.  I didn’t have high expectations for this appointment.  I had experienced too many defeats, something most POTS patients feel as they search for an answer. Yet this appointment, I was given hope.  He began putting all the pieces together.  He started me on a new regimen and for a couple of years, I found myself able to do a bit more.  I still had low grade fevers that would last weeks to a month and chronic fatigue but I was able to function in society.  I could go to the beach with my family.  Even though I felt the effects of POTS daily, I was stable.  My Internists continues to be my primary care physician and has helped me physically and mentally navigate through this unpredictable journey.   I cannot express how crucial it is to find a highly qualified, informed primary care physician.  There is a vast expanse between a doctor who has heard of POTS and a doctor who knows how to treat POTS.

The Moment POTS Became Debilitating 

I was feeling well enough to accompany my husband to his 25th Class Reunion from the Citadel in Charleston(five hrs. from our home).  I was the most stable I had been in years.  After attending numerous events, we were tailgating before the football game.  My husband was introducing me to a friend and suddenly everything became muffled and overwhelmingly loud.  My knees buckled and bam…life changed as I knew it.  I thought I was having low blood sugar because I was having tremors as well. I whispered to my husband as discretely as possible I was not ok and I needed a drink with sugar immediately.  I found a seat and grabbed a piece of cake to eat the icing. My husband found sweet tea, but I was not improving.  My arms and my legs became numb and heavy, and everything was spinning and very loud(and I had not consumed any alcohol).

Still believing I was having a blood sugar drop(and I was late to take my afternoon meds) we decided to leave.  My husband basically had to carry me.  I couldn’t walk straight nor could I get feeling in my legs. I kept hitting them trying to regain feeling, but it was not working. I sat down on the sidewalk and had my husband run to get the car.  As soon as he placed me inside the car I took my meds and elevated my feet while blasting the air conditioner.  Within twenty minutes I felt some relief. I rested the entire evening and the next morning we packed to go home.  We tried to stop for breakfast as we were leaving, but I had the same thing happen again (pre syncopal episodes).  In that moment, I knew something was wrong, and contemplated going straight to an ER, but I wanted to get home first.

As we were traveling home the episodes were increasing in number and severity, but I know now traveling exacerbates my symptoms.  I haven’t traveled anywhere in almost three years except to the Duke Pots Clinic (which is a two and half hours drive).     As soon as we reached our home my husband carried me to the bed but the neurological sensations were increasing by the second.  We decided to go to the ER and I was told my blood work was fine and I had vertigo.  Over the next six weeks I took numerous trips to the ER while continuing to get worse and weaker(except when they gave me liters of fluid, I would feel slightly better).  I had to sit up when I slept.  Elevating my head and legs helped with the neurological symptoms.  I was so sick and felt completely helpless in finding answers.

Receiving A Diagnosis

One afternoon, I was having an episode and I was on my bedroom floor with my legs elevated on a piece of furniture.  Everything became numb again and I was white as a ghost. This time not only was my entire body limp, I was having trouble swallowing.  I tried to get up and I physically could not do it.  My husband picked me up and carried me to the car, drove me to the ER, and I was admitted.  I spent eight days on the Neurology Floor.  First they ruled out a stroke, then MS, and painless migraines.  Once they felt they had exhausted all options, they called for an Electrophysiologist.  He ordered a tilt table test and I failed it miserable.  My BP dropped to 56/30 and my heart rate was in the high 150’s when I passed out (around the three minute mark).

The Electrophysiologist came into my room and said, “You have POTS.”  I had no idea what that was, but I asked what treatment could I do to get better.  Were there meds I could take?  How long would this POTS thing last?  He said, “You just have to live with it.  It’s incurable.  We can try meds, but ultimately this is what your life is going to be like from now on.  There are support groups for people like you.” I was crushed.  I spent eight years searching for a diagnosis and when I finally received one, I was told I was always going to live with POTS.  I cried for hours thinking of my children and husband and what our new life would look like.  How would I ever have any quality of life if I made no improvement?

They tried numerous meds but I had adverse reactions to them.  I was informed  they could do nothing else to help me.  I knew I couldn’t go home in the state I was in so they called Duke and I was transferred via ambulance.   Duke is POTS heaven.  I ended up having to stay there ten days.  We experimented with numerous medications but I could not tolerate almost all of them. Beta blockers, blood pressure meds, florinef, steroids, and salt tablets are some of the medications I cannot tolerate.  I do remember they had to give me ten liters of fluid along with me drinking nonstop to get my blood volume where it should be.  I learned a great deal about POTS during my stay at Duke.

Life After Diagnosis

I would be lying if I said this journey has been easy.  It took many months for me to gain the strength to walk across the house without having to hold onto something. I dropped weight rapidly and worked hard to eat because I had no appetite.  My days consisted of me in the bed or on the sofa because the neurological symptoms were too extreme.  Just having a conversation was too much stimulation.  The sound of my own voice made me sick.  We had to keep everything in the house quiet. Even watching TV triggered the neurological symptoms.  Especially a news channel, because there was so much going on at once.  My brain couldn’t translate it in time.  A person was speaking, while a video was playing, as breaking news scanned across the bottom of the TV screen.  It felt like my brain could process only one thing at a time. That continues to be the case even now, but some days are better than others. We purchased a mechanical mattress to sleep with my head and legs elevated(the best POTS investment I have made by far).  We also purchased a shower chair.  Although the movement of the water is too much for me some days and I have to wash my hair in the sink and take a warm bath instead.  I found when I do shower, if I keep my compression hose on until the very end, I recover quicker.  I also make the shower cool for about ten-seconds at the end and I literally can feel my body temp regulating.  There are also days where a shower is just not happening.  Baby wipes and dry shampoo are my best friend.

I also developed food intolerances I had never experienced.  I had already removed gluten and dairy from my diet years before my POTS worsened.  I credit these dietary changes as to why I didn’t have more severe episodes already.  I had a rash that would go down the sides of my face and neck.  After removing gluten and dairy, my rashes disappeared and my joint pain lessened significantly.  I also currently have to follow a low histamine diet which is unfortunate because most of my favorite foods have high histamine levels (such as spinach and tomatoes).  At one point, I had six safe foods that did not give me a reaction.  They were grilled chicken, pretzels, cashew ice cream, marshmallows, protein powder, and apple sauce.  I have recently been able to expand the number of foods I can tolerate and have been able to gain weight as well.

Compression hose are a must for me!  I wear them every single day.  I purchase the thigh highs with open toes(and with rubber dots not rubber bands to hold them up).  Knee highs do nothing for me while compression pants press too hard on my stomach.

As far as quality of life,  I am still homebound 90% of the time.  I lost the ability to drive but as time has passed, I can drive within a two mile radius of my home on good days(good being relative).  I use a wheelchair when we do go out.  I wear noise silencing headphones in loud spaces.  For example, I wanted to go to the Christmas Parade with my daughter.  The only way I could tolerate the noise was by wearing the headphones.  Obviously, drinking fluid is my day job.  It seems to be all I do some days.  But remaining hydrated is key to gaining stability.  Bottom line is I plan every move I make.  I have to choose what I spend my daily energy (or lack thereof) on.  I pay a price for every activity I choose to do, so I choose wisely.

My Symptoms

Tachycardia

Low Blood Pressure

Tinnitus 

Pain (especially coat hanger pain, shoulder blade pain, and chronic costochondritis)

Dizziness

Brain fog

Shortness of breath

Tremors

Constipation

Migraines

Zaps that feel like electricity from my head to my toes

Heat intolerance

Numbness in my extremities

 Feeling of heaviness of my entire body

Exercise intolerance (I realize this is a controversial topic in the POTS community)

Low grade fevers

Extreme nausea 

Heightened senses (I can smell everything. Noise is exaggerated in my head. Sometimes it hurts to be touched. Visually I struggle with focusing in on movement.  I become very dizzy from trying).

I also get this sensation as though I am in an airplane and the pressure is changing or when you are swimming and you go under too far.  While I am feeling that sensation, I tend to have tremors, extreme dizziness, and heaviness in my arms and legs. 

Episodes where it feels like my chest is on fire.  And it’s shooting heat through my body.

Remaining Hopeful

Through it all, I have found you have to remain positive, find hope, and keep a sense of humor.  Pots is a cruel and debilitating illness.  Finding a support system is vital to your mental health.  I started a page(with a POTS friend) on Facebook called Potsies Unite.  It is a space where we can support one another.  I have made incredible friends that I love dearly.  We text, message, and sometimes FaceTime.

I believe it’s also important to remind yourself what you CAN do instead of focussing on what you CANNOT.  That only leads to depression, negativity, and hopelessness.  Finding new hobbies helps fill the empty spaces of your old life.  I do puzzles when my neurological symptoms aren’t too bad.  I bought a keyboard and I play by ear (very softly) and I find it to soothe my anxiety.  I also started blogging.  It was a way to express myself, share my story, raise awareness, and to encourage others (www.lilyingrace.com).

Although ultimately, it’s my faith that has brought me this far.  Hope is key!  When we lose hope, we lose our motivation, our relationships, and even ourselves.  Take POTS day by day, and sometimes moment by moment.  Don’t sweat the small stuff.  You quickly find out what is important in your life when you become sick. It’s imperative to remove as much unnecessary stress as possible.  If something is toxic in your life, you have to remove it.  Your health depends upon it.  I could say so much more, but I encourage anyone reading this to not give up hope! I do believe there are better days ahead.  I believe we will see better treatments as we continue to raise awareness.  It’s unacceptable that it took eight years to receive my diagnosis.  I share my story in hopes someone else won’t have to wait that long.

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