How I came to realize I may have a form of dysautonomia known as postural orthostatic tachycardia syndrome (POTS)

It’s hard to pinpoint exactly when I started experiencing symptoms of dysautonomia.

What is dysautonomia, you ask? It’s an “umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the ‘automatic’ functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems…” Excerpt taken from dysautonomiainternational.org.

Throughout college I was a full time student, I worked part time, and still took part in activities I enjoyed like trying new restaurants and playing tennis. I did experience occasional anxiety but it didn’t severely affect my quality of life.

I graduated from college in December of 2011 and then started noticing changes in how I was physically feeling throughout 2012. I would have infrequent episodes of anxiety, racing heart, and difficulty sleeping. I just figured I needed to take better care of myself, clean up my diet, and take stress management more seriously. Enter The Paleo Diet and the reason I started this blog! 🙂

I significantly reduced my consumption of gluten, processed foods, and refined sugars. Did it help? Yes and no. I think everyone has different needs when it comes to nutrition. I personally had to add some carbs and starches back to my diet, like brown rice, quinoa, and potatoes. Eating well helped but unfortunately may not have been the answer to my unresolved problems.

While I was on The Paleo Diet throughout 2013, I continued to experience episodes of “feeling off” but they were still infrequent and I didn’t believe they would worsen or become chronic.

I did see a Cardiologist for the tachycardia (heart racing) I was experiencing, but my EKG and echocardiogram results were normal. They said it was most likely stress or anxiety.

Fast forward to 2014 when my symptoms became more persistent and couldn’t be ignored anymore. In April of 2014 I went on a trip to Arizona. I’d taken trips out of state before with no problem but this time it was different. I remember getting on the flight to leave for Arizona feeling tired, lightheaded, and like I was going to have a panic attack, but there was no emotional component behind it. I wasn’t afraid to be on the plane. These feelings seemed to come out of nowhere.

We got to Arizona and I thought I should focus on relaxing and just enjoy the fun company and beautiful scenery. A few days into the trip we decided to go to an outdoor mall. I was extremely excited because I love shopping and the mall had some stores that we don’t have in Milwaukee. So there I was, feeling in my element with a couple of new outfits in my possession. After walking around for a couple of hours, I started to feel really tired. Honestly, there isn’t an accurate word for this type of fatigue because “tired” just doesn’t describe it. A more accurate description would be the overwhelming need to promptly sit or lie down and cease all activity. Our shopping trip was almost over though so I tried to push through it. On our way back to the car, I started to feel really sick. By the time I was able to sit down my heart was racing, I felt hot, I was shaky, and I felt like I was going to faint. When we got back I lied down for awhile and the symptoms eventually passed. I decided it would be best to take it easy for the rest of the trip and ended up relucantly skipping another trip to the mall.

When we got back to Wisconsin, I was surprised by how wiped out I felt. I ended up taking a sick day the Monday upon my return to work in an attempt to restore my energy. When I went back to work on Tuesday, I knew something was wrong. Despite an entire day of resting the day before, I was still tired. I remember getting up from my desk in the early afternoon to stretch and take a walk to the restroom to “wake-up.”

By the time I got to the restroom my heart was racing and I felt like I was going to faint. I got light-headed and my vision started to “grey out.” When this happened, my sympathetic nervous system kicked in with a rush of adrenaline and I instantly went into panic attack mode. I made my way back to my desk, which thankfully wasn’t far from the restroom, and told my supervisor that I felt like I was going to faint. I sat down at my desk shaking from head to toe, hyperventilating, fearing the worst because I had no idea what was happening to my body. After several minutes of strange heart palpitations, vision grey outs, and feeling like I couldn’t get enough air into my lungs, she asked if I wanted her to call an ambulance. I said yes and off to the ER I went.

At the ER they ran all of the usual tests (thyroid function: normal, iron levels: normal, blood cell count: normal). They also did a chest X-Ray and everything looked normal. The only thing that didn’t seem to be normal was the heart monitor I was hooked up to. Whenever I went from lying to sitting up, my heart rate increased enough to set off the monitor alarm. It wasn’t a major cause for concern because my heart rhythmn was technically normal, it was just elevated to a peculiar level upon minimal exertion.

The ER nurse said it wasn’t dangerous but something they’d refer me to a Cardiologist for because it was a little unusual. When I asked what was causing it no one really knew. They seemed to shrug it off and say it may be anxiety and recommended I try an anti-anxiety medication if I felt these symptoms again.

So I did. Unfortunately I felt these symptoms almost every single day, so I took an anti-anxiety medication to cope. It didn’t fix the problem, but after eight difficult months my level of functioning had improved by about 65%. I had a bit more energy, I was sleeping a little better, and I felt much more optimistic and like myself.

By this time it was December of 2014 and the busy holiday season was upon us. I think even healthy, normal people are at risk for “burn-out” this time of year. I’m no exception and probably should have been more mindful of my seemingly limited energy supply. After several weeks of decorating, buying presents, baking, and traveling, I ended up majorly crashing on December 26th. This was my worst crash to date and I was in bed for several days.

This is when I stopped accepting that “anxiety” was the root of all of my problems. I became extremely frustrated and started keeping track of every symptom I experienced, including fluctuations in my heart rate and blood pressure.

I went to see my primary doctor and showed him my detailed journal. While the symptoms aren’t pleasant, I’ll list them because maybe someone may be experiencing the same thing and looking for answers.

(Note: These symptoms vary from day to day and fluctuate in intensity.)

-Fatigue that worsens after exercise, activity, or a busy day
-I can experience an energy crash for several days
-Sleep doesn’t seem to be restorative or refreshing
-I feel best when lying down, okay when sitting, and worst when standing or walking
-When I stand up, my heart rate consistently rises by a minimum of 30 beats per minute
-My blood pressure rises when I stand and walk
-When I stand and walk I often feel weak, tired, and short of breath
-I get a burning feeling in my arms and legs even though I’m not exercising them
-Symptoms are aggravated by heat and hot showers
-I sometimes have random adrenaline surges or “panic attack” symptoms in the middle of the night after waking (my highest recorded heart rate was 199 beats per minute lying down)
-Trembling or shaking even though I’m not cold
-Raising my arms high above my head causes my heart rate to increase

My primary doctor referred me to a Cardiologist who, after reviewing my symptom journal, suggested I may actually have a form of dysautonomia called postural orthostatic tachycardia syndrome (POTS). Finally! Someone who didn’t think it was just anxiety!

Just to break it down, postural= posture, orthostatic= upright position, tachycardia= faster than normal heart rate at rest, syndrome= set of symptoms.

He prescribed me the beta blocker, Atenolol, to keep my heart rate and blood pressure down. I’ve been on the beta blocker for about 3 weeks and it has helped but not eliminated my symptoms (particularly the fatigue and un-refreshing sleep). There’s still work to be done with restoring my level of functioning and quality of life. I would love to get to the source of what’s causing the dysautonomia. That’s what I’ll write about in my upcoming blog posts! Also, if you’ve made it this far, thank you for reading this long post! 🙂

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