5 doctors and 3 ½ years later, my medical mystery solved: I have Postural Orthostatic Tachycardia Syndrome. Here’s my POTS Syndrome diagnosis story.
I remember so clearly the first moment it happened. I was standing at the kitchen counter, chopping carrots, onions, and celery. My darling boy playing at the table nearby.
Suddenly all the energy drained out of me, as if all the blood had fallen to my feet and now weighed the same as, as much lead.
The crushing fatigue and shortness of breath seemed to confirm that indeed my body was staging a revolt. Enough was enough. It was giving me no choice but to lay down.
In that moment I went from being a vibrant mother of one, nurturing her young family, to someone struggling to do even the basics of daily life.
But I had no idea at the time how those same debilitating symptoms would haunt me for years to come.
I was about four weeks pregnant, just before my 29th birthday. As soon as I got a positive pregnancy test, I started in on making freezer meals, trying to get a jump on first-trimester nausea and fatigue.
As I prepared for Baby #2, I knew what to expect this time around, and even more, since now I had a 1-year-old to take care of as well.
Wouldn’t it be great, I thought, to have a stash of freezer meals stored away so I didn’t have to worry about what my family would eat, even if I didn’t feel like touching a bite.
But I never got quite as many completed as I hoped.
By the time I was 15 weeks along, I would report to my midwife that I was thirsty all the time, dizzy when standing too long, and tired.
At 19 weeks: very tired and experiencing loss of appetite, and heart palpitations.
All of this seemed to me at the time to be normal pregnancy symptoms, and my midwives apparently agreed.
It’s only in retrospect that I can see the significance. This is where it all started.
Three Years of Testing
By the time my baby was a few months old, I was still feeling awful. I’m not one to rush to the doctor at the slightest sniffle, but I could hardly make it through the day.
I arranged to have my parents come help with the kids, so I could visit a local naturopath. This would be the first of many doctors appointments.
Along the way, I was tested for dozens and dozens of possible causes including Autoimmune disorders, RA, Lupus, MS, Hypothyroid, Diabetes, and Lyme disease to name a few.
Each time I went for another blood draw and awaited another round of test results, someone would say something encouraging like, “I’m praying you don’t have [insert serious disease I was being tested for here]”.
Don’t get me wrong, I treasured all of the kind words and prayers.
But at some point, I started hoping for a positive test. Because the fact was, I was already sick. And at least a positive test might bring me closer to a treatment and some level of relief.
I’m thankful that my doctors never questioned my symptoms or tried to ascribe a bogus psychological cause to them.
But there were the days where I started to wonder. Am I going crazy? Seriously, could this all be in my head?
Every time my heart was racing and I could barely breathe as a was doing dishes or standing in the shower, I thought maybe I was having an anxiety attack.
I was always wondering why I was failing so miserably to do the most basic chores around the house, and feeling guilty for not being able to get it all done.
When it was too exhausting to get the kids shoes on, let alone take them outside to play, I thought, Am I just a tired mom? Maybe this is what life is like for everybody.
The Hardest Part
In those times, I would give up and try to push through with normal life. Inevitably, I’d end up even worse off than I was before and I’d head to yet another doctor for more tests. More shaking of heads. More I-don’t-knows.
I had to keep trying for my family. If it were just me, I might have given up long ago, but those tiny darlings of mine needed a healthy Mama.
I wanted to be there for them 110%, not the meager 25% I was capable of giving them.
They kept me going every single day. Dragging myself out of bed. To every doctor’s appointment. To every blood draw.
The effort of searching for answers was physically and mentally grueling, let alone keeping up with daily life.
Yet, what choice did I have but to keep searching?
One morning, my daughter (Baby #2 now almost 3 years old) with her petite features and blond curls crawled up next to me on my permanent spot on the couch and pleaded in her sweet voice, “Mama, you not tired, come play with me.”
I’m a strong person. I have demanded a lot of myself in my life and succeeded in meeting my goals.
But no matter how much I wanted to acquiesce to her request, and oh do I want to give her everything her little heart could want, I didn’t have the strength or energy to do anything but let her snuggle next to me while I rested.
As I conveyed the story to my doctor through gasping sobs, she gave me a look of genuine concern and decided to throw every last test at me. We were both determined to figure this out.
Famous Last Words
About the same time, I met my friend Amy for coffee. This was one of the first times I had seen her since her big health crisis as neither of us were able to get out much.
As she shared with me about her new life with a diagnosis of a serious chronic illness called POTS Syndrome, I found so much I could relate to.
Fatigue, dizziness, insomnia, pain, check, check, check, and check.
Apparently so did a lot of people.
She explained that although these are all symptoms many people experience, and so feel they can relate to her suffering, they don’t experience them with the intensity or consistency as someone who is sick with POTS.
I agreed. “Yeah, totally, I have those symptoms all the time, and I don’t have POTS.”
Or, maybe not…
In the meantime, I was taking a comprehensive tour through the medical literature and watching every expert lecture on YouTube related to Chronic Fatigue Syndrome (which was my only diagnosis up until that point) and I soon discovered my own answer.
I learned that Postural Orthostatic Tachycardia Syndrome affects from 25 to 60% of people diagnosed with CFS.
As I read through the list of symptoms and stories of POTS patients, I could almost hear an important puzzle piece click into place.
Some of the most common POTS Symptoms include:
- Tachycardia (rapid heart beat)
- Heart Palpitations
- Fainting or near fainting (about ⅓ of POTS patients faint)
- Exercise Intolerance
- Blood Pooling in Hands or Feet
- Heat Intolerance
- Shortness of Breath
- Chest Pain/Discomfort
- Abdominal Pain
- Myofascial pain
- Delayed gastric emptying/ Bloating after meals
- Bladder dysfunction
- Excessive Sweating or Loss of Sweating
- High or Low blood pressure when standing
- Low blood pressure after meals
- Brain Fog
- Sensitivity to Light and Sound
- Excessive Thirst
- Weight loss or gain
While not all POTS patients experience all of these symptoms, I would say I worked my way through most of this list on a daily basis and a few of the others more sporadically.
POTS Symptoms may be triggered by:
- standing up after lying or bending down
- sitting for longer periods (about an hour for me)
- exposure to heat (for me this is anything above about 72 degrees)
Good thing, since we all know moms of small children never need to stand for long periods of time or frequently bend down. Not!
Home Test for POTS
Lucky for me, POTS is also pretty simple to diagnose.
POTS is defined as an increase in heart rate of 30 beats per minute for adults when going from laying to standing (or anything above 120 bpm) within 10 minutes of standing.
For reference, a healthy individual would typically have an increase of 10 or 15 beats per minute.
This situation is often simulated with a Tilt Table Test to diagnose POTS, but it can also easily be diagnosed with an active standing test within 20 minutes in any doctor’s office.
In an active standing test, the patient first lays down in a quiet room for about 10 minutes. They should not have recently eaten or had any caffeine, so it’s easiest to do in the morning.
Their heart rate and blood pressure can be taken manually while lying down and then 3 times while standing still for 10 minutes at the bedside.
I wouldn’t recommend anyone do this at home, especially not if you’re alone, and definitely not if you think you might faint!
But of course, as desperate as I was for answers, that’s exactly what I did.
The first time I did this, my heart rate shot up 75 to 158 bpm!
Bam. I had my answer.
POTS Syndrome Heart Rate
I began to use my Fitbit to track my heart rate as I did normal tasks around the house, and it became obvious why I was exhausted all the time.
115 beats per minute while sitting eating a meal.
125 bpm while doing laundry.
135 bpm while doing dishes.
145 bpm after giving the kids a bath.
No wonder I crashed for a week or more after attempting exercise: It was like I was jogging while I was standing still doing the dishes!
At my last doctor’s appointment, after the final round of tests came back normal again, she broke it to me (and my husband, as by now he was having to drive me to appointments) that she had done everything she could.
I would need to be referred out to some other specialist, though which, she wasn’t even sure.
But we were pretty sure, and asked for a referral to a cardiologist, hoping to finally find some effective treatments and an official diagnosis.
My POTS Syndrome Diagnosis Story: ‘D’ Day
At my first appointment with the cardiologist (ecophysiologist to be precise), I was put through a similar test as the active standing test I mentioned earlier, where I went from laying to sitting to standing.
This time not only was my heart rate monitored but also my blood pressure. I learned that my blood pressure dropped significantly when I stood up in addition to my heart rate sky rocketing.
This never got picked up in my regular doctor’s appointments because blood pressure is always taken when sitting, not standing. Throw in a little white coat hypertension, and everything looked normal.
If doctors rely on the typical resting blood pressure and heart rate screening we all get at every doctor’s appointment, POTS will be missed.
In real life, I was walking around barely conscious.
A few more tests needed to be done to rule out conditions that cause similar symptoms like adrenal exhaustion or Addison’s disease, hypothyroid, and anemia.
More normal test results, which in turn confirmed what I already suspected.
On September 14, 2016, I was officially diagnosed with POTS syndrome, approximately 3 years and 9 months after my symptoms started.
I’m one of the lucky ones, though. Many POTS patients aren’t properly diagnosed for 5 years or more!
What’s the POTS Prognosis Doc?
At the same life-changing appointment, my electrophysiologist estimated that I’ll be able to get back to 40-60% of normal functioning.
I know it doesn’t sound like much, but that would be a huge improvement from what I’ve been living with for the last several years and especially the last six months.
Of course, I want to be the exception, the one who beats the odds and comes back for my follow up in a year back to full health.
But in all likelihood that won’t be the case. Most POTS patients do improve with treatment but few ever achieve complete freedom from symptoms.
Quality-of-life with POTS has been compared to patients who are on kidney dialysis or who have heart failure. Many “Potsies” are unable to work or are on full disability.
My next great challenge is to learn to live well with chronic illness.
I’m doing absolutely everything I can to support my health, and continue to pray for complete healing. My extremely supportive family is helping to give me the best possible chance to get healthy.
No matter what happens, though, things will only get better from here. I have many more resources and treatment options available to me now that I have a diagnosis.
I Have Postural Orthostatic Tachycardia Syndrome
After 5 doctors and 3 ½ years, everything finally made sense.
I had my answer.
I’m not crazy. I’m not lazy. It wasn’t anxiety.
I’m not just a tired mom.
I knew my symptoms weren’t normal. Year after year, I fought for my health, and now I know…
I have Postural Orthostatic Tachycardia Syndrome.
POTS Syndrome predominantly affects women ages 15 to 50 years old. Symptoms often first show up during adolescence, pregnancy, or after a viral infection.
If you or someone in your life has been suffering from unexplained fatigue, I hope you’ll share this information with them.