My POTS Story

An alternative title for this post could be "How a Parking Lot and Some Goats Led Me to a POTS Diagnosis."

For over a year-and-a-half, I had been dealing with a variety of vague and sometimes debilitating symptoms that I wrote off as fatigue, side effects from medications, or incorrect dosing of my thyroid medication.  During June and July of this year, I underwent a variety of tests that led to a definitive diagnosis of POTS: Postural Orthostatic Tachycardia Syndrome.  My symptoms seemed to have awakened one day and progressively gotten worse with time.  When I reflect back on this year and last, I can recall particular days where my illness was becoming more and more evident.  I am thankful that a diagnosis came quickly.  And I am thankful for my parking lot at work and some goats at a local barn for leading me in the direction of a fairly fast diagnosis.

My first memories of POTS symptoms started early last year.  In 2016, I had decided to begin taking antidepressants for episodic hormone-related depression.  I tried a handful of medications at the end of that year, and finally began the medication I am currently taking at the beginning of 2017.  With that new medication came some nausea and appetite loss.  Some mornings I would feel sick to my stomach like I was going to vomit, and there were days I actually did vomit.  Around this same time, I noticed that I was experiencing increasing pain in my hands and wrists, particularly with gripping or over-use.  I found that if I minimized time on my iPhone, it seemed to reduce the pain.

Moving towards March, I began to experience debilitating fatigue.  I have to get iron infusions periodically because I am chronically anemic and my body doesn't absorb oral iron.  I thought that perhaps my iron levels were running low again.  What I came to find out is that my body had decided to suddenly stop processing my thyroid medication--which is extremely rare and had only ever happened in one other of my endocrinologist's patients.  For a person without a thyroid, hormone replacement medication is necessary in order to live.  My blood labs reflected a total lack of thyroid functioning in my body, which explained the debilitating fatigue.  Around this same time, my morning vomiting became worse, to the point that I was in my doctor's office one morning for an appointment and they had to give me a B6 injection because I couldn't stop throwing up.

Looking back, I think that March of 2017 is probably when my autonomic nervous system broke--the beginning of my POTS.  As the year went on, I continued to face nausea and vomiting, as well as the migraines that had become the norm over the past year or so.  I only needed to use five sick days during 2017, but I did need to go to work late or leave early at times due to my symptoms.  Towards the end of the year around November, I found that it had become increasingly difficult for me to wake up in the morning.  By that time, my iron and thyroid levels were in appropriate ranges, but I found that I would be running late to work every day.  Because I already started work later that the majority of campus staff, I had to park in a lot that was about a half-mile from my department.  In the morning, I would rush to my building and arrive to my office out of breath, sweating profusely, dizzy, nauseous, and feeling like I was going to cry.  I also began to notice how difficult it was for me to walk up the stairs in the building to my office, as I experienced heavy legs and a racing heart.  I blamed anxiety and depression.

Because of my challenges arriving to work on time and needing to park so far away from my department, I decided to pursue disability-related accommodations through our HR department.  I was approved for an even later start time so that I could walk to my building without having to rush, and also an extended lunch break so that I would have enough time to walk to my car, go home for lunch, return to campus after lunch, and walk back to my building.  The walking felt extremely challenging to me, but I didn't entirely know why.  I was a mostly healthy 31-year-old woman that should be able to walk the equivalent of two laps around a track, but why did walking make me feel so ill?

The accommodations coordinator with HR encouraged me to explore a disability parking placard with a physician.  I contacted my endocrinologist and was told that they have an office policy against approving disability placards.  I avoided talking about my need with my psychiatrist because I was having a hard time finding a reason why I needed assistance with walking.  My pain and exhaustion and weakness felt so real, yet there wasn't a clear explanation for my symptoms.  They seemed to be getting worse.  In fact, I remember being on the verge of tears on Christmas morning in 2017 while my family was opening presents because I felt so unwell.

Early in 2018 marks another moment in time that I can now look back on and recognize the increasing severity of my condition.  In early January, I felt like I had come down with the flu.  I felt more run-down than I ever have in my life, and that is a significant statement for someone with multiple chronic conditions that cause debilitating fatigue.  My glands felt swollen, I felt weak, my body hurt, my cognition suffered, I struggled to participate in work meetings.  The thing was, I was still able to go to work and appear fully functional, but internally I felt like I was slowly dying.  My endocrinologist suggested I might have the flu without a fever.

My symptoms started to resolve a bit the following month, and I discovered that I had been getting cross-contaminated with gluten and possibly dairy from a local pizza place.  I assumed that the symptoms I experienced for all of January were the result of my autoimmune response to gluten and dairy, and I thought that avoiding eating out would help my symptoms to resolve.  From March through April, I used three sick days at work, but in May is when my body finally said, "Enough."

I was at work on a Wednesday, three days before my birthday, and beginning to feel like I had during January.  I felt dizzy, feverish, sore, and unable to concentrate at work.  I called my fiancé in tears because I wasn't sure I was going to be able to drive myself home.  I stayed on the phone with him until I did get home, and he rushed over to pick me up to take me to urgent care.  The doctor I met with at urgent care tested me for strep and mono, but both came back negative.  She told me that I likely had some kind of virus and that I should stay home from work until Monday.  I e-mailed my supervisor and explained that I would need to take some time off, and that I wanted to discuss modifying my student caseload because I thought work-related stress might be negatively affecting my health.

I slept for the better part of the next two days, and on Saturday, my birthday, my fiancé and I went to a local farm so that I could feed goats.  I still felt fatigued, but improving, and knew I could handle a brief excursion.  However, what I didn't anticipate was that I wouldn't be able to move my dominant wrist by the end of the afternoon.  We had gotten groceries the previous day from Costco, so I thought perhaps I had injured myself while lifting something.  However, in the days that followed my pain continued to get worse rather than better.  I began to experience numbness and tingling from my hands up to my shoulders, and there were days at work that I couldn't do anything with my hands during my last two hours in the office because I was in excruciating pain.

At this point, I had continued to put off pursuing a disability parking placard because I couldn't mentally justify my need for it, even though walking some distances had become a challenge.  I also noticed increasing pain in my legs in the evenings after a walking-heavy day.  It felt like my ankles, knees, and quads were on fire.  I would cry after work when I got home because the pain was so unbearable.  So, between my leg pain and hand pain, I finally sought to find a primary care doctor in town.  At my first appointment with the new doctor, I broke down into tears describing to her how much pain I was in from walking and how ill I felt when I arrived to my office after the half-mile trek.  Without my asking, she immediately said she would approve me for a disability parking permit.

In the following weeks, I was given an ultrasound of the veins in my legs and arms and referrals to an orthopedic surgeon and a neurologist.  The orthopedic surgeon ordered an x-ray of my hands, which showed no osteoarthritis or evidence of anything abnormal.  The neurologist performed a nerve conduction test to check for carpal tunnel, but my nerves were functioning normally.  I described my symptoms to the neurologist's physician's assistant, and when she and I and the neurologist were meeting to discuss a course of action, the physician's assistant asked me to stand up and then attached the blood pressure cuff to my arm.  She shot the doctor a knowing look and then said to me, "You have POTS."  Apparently, when I had first come into their office, my blood pressure and heart rate were in perfectly normal ranges.  As soon as I stood up, my blood pressure remained about the same but my heart rate shot up 37 beats per minute.  The neurologist said they would continue with standard POTS testing just to be certain, but that it meant at some point my autonomic nervous system broke and that there would not be a way to fix it.  He also said he suspected fibromyalgia and chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), but that further testing would be needed.  I was referred to a cardiologist and pulmonologist and ordered a variety of blood labs and an MRI of my cervical spine.

Testing with the cardiologist included an EKG, echocardiogram (heart ultrasound), Holter monitor, and tilt table.  The testing led to a definitive diagnosis of POTS.  The pulmonologist will be performing a sleep study, and he will be exploring sleep apnea, periodic limb movement disorder (PLMD), and chronic fatigue.  The MRI revealed a herniated disc in my cervical spine at the C5/C6 vertebrae, which has likely been the cause of at least some of my upper-body pain.  As for the POTS, that at least in part explains the pain in my lower extremities.  Essentially, my body has challenges with gravity, and so when I move into a sitting or standing position, blood pools in my legs and doesn't reach my brain quickly enough.  In response, my heart rate elevates significantly in order to get the blood moving as quickly as a possible.  When I am doing normal, non-strenuous activities, my heart rate might be the same as it would be for an adult of my same body composition doing vigorous aerobic exercise.  Essentially, my body is in an all-day workout.  At the end of the day, I find that my lower limbs tend to be uncomfortably hot and swollen.

As has been the case for the entirety of 2018, my symptoms seem to be progressively getting worse.  I have had three instances of near-fainting, one of which included a visit to the emergency room for IV fluids.  My body is happiest when it is laying down.  It struggles the most when I am standing for too long, walking for too long, in heat, walking upstairs, rushing, dehydrated, on an empty stomach, or not laying down periodically.  My doctor has asked me to increase my electrolyte and water consumption and wear compression garments.  I will be starting POTS medications in a few weeks.

I wanted to capture the challenges of the past year-and-a-half so I don't forget what my lowest POTS moments have felt like.  I am hopeful that with treatment there are better days to come.  But I also want this to serve as a reminder that it can be dangerous to write off symptoms.  I didn't realize what I was doing to my body until I was given a label.  Blood deprivation of the brain is serious.  I am so grateful that the physician's assistant had the wherewithal to check my standing heart rate.  My constellation of symptoms seems unrelated and random; they could have easily been the result of my pre-existing conditions and side effects from medications.  I feel validated.  My body is sick.  There are treatment options.  There is hope for the future.

My primary care doctor suspects that I may have an underlying connective tissue disorder, so more testing is on the horizon.  We also both suspect I may have mast cell activation disorder (MCAD), which would explain my frequent hives, copious food sensitivities, and general system-wide sensitivity to every environment, which has been getting progressively worse.  There are treatment options to help regulate my autoimmune disease, manage my migraines, and promote hormone balance.  I am moving towards healing.  But, that doesn't diminish the fact that these past many months have been hard and exhausting and at times I didn't think I could push forward.  I know many people wait years for accurate diagnoses.  I know I should count myself lucky to have doctors who believe me and are doing everything they can to help me.  It has taken a certain level of bravery to entrust myself to this process, and there are moments that I wish I could trade in my body for a different one.

But, the reality is that I struggle daily with chronic illness and that makes me who I am.  I do the work that I do with my students because of who I am.  Other people might be diagnosed with these illnesses and then not choose to do this work.  For me, I willingly accept these diagnoses because with them I choose to do the work that I do.  And it makes it okay to face these challenges because they are what allow me to help my students best.  And so I say to all of this, yes.  Yes.  It's okay.  This is okay.  I'm okay.  I'm okay because I can help others because of this.  I'm okay because I can better understand others because of this.  I want to help and understand.  I want to affect positive change for people.  And if that means being on the front lines of the chronic illness battle, I give my yes.  Yes, yes, yes.  I take this cup.  This is not easy, but I will let it be my truth and path and purpose.