November 17, 2018 – My First Syncopal Episode
It was about five weeks post-concussion when I started to experience another issue which was quite frightening. At that point I really didn’t think I could develop any new issues. I woke up at 0700AM one morning after tossing and turning all night. I got up to walk to the bathroom and collapsed on my bedroom floor.
I don’t know how long I was out but opened my eyes to find myself lying on the floor. My body felt tingly and numb. My legs felt very heavy. I laid there like a pretzel, terrified. I didn’t have enough energy to scream for help. Eventually, I crawled back into bed and called my Mom on the phone. She came up to my room to check my blood pressure. It was 80/60, very low. My heart rate was 160, very high.
After the syncopal (fainting) episode, I didn’t feel right and was very fatigued. I began to experience heart palpitations and started to experience chest pain. My head hurt but also felt like it was floating. I laid in bed for the rest of the day because I was too weak to move. I thought maybe this was just due to dehydration or lack of sleep. I hydrated as much as possible throughout the day.
I saw my concussion specialist and explained the event. He was concerned that maybe this was HCM (hypertrophic cardiomyopathy) which is the cause of sudden death oftentimes in young athletes. He referred me to a sports cardiologist for further testing. The soonest I could get in was almost a month away.
December 4, 2018 – Three Weeks Later
I thought that maybe I should see a chiropractor and have my neck adjusted. Maybe this would help with the headaches and neck pain. He was booked for months and so I was on the waitlist. I got a call that morning that he had an opening and I was so thrilled to go to the appointment and hopeful for relief.
I checked in to my appointment and started walking over to the waiting area when I suddenly felt very hot and started profusely sweating. My head started pounding and my stomach was in knots like I was being stabbed. My vision started to tunnel, my lips went numb followed by my arms and then my legs. I started seeing spots and felt like I was going to pass out. No one was near me for help. I thought, okay I just need to make it to the bathroom to splash cool water on my face. It’s not far.
I didn’t make it and must have passed out because I woke up in a hallway somewhere along the way to the bathroom. I felt so weak, like I could just sleep there for days. I needed to find help but the nurse’s station seemed so far away. I got up to walk to the nurse but I started feeling like I was going to pass out again. The nurse saw me and started walking towards me but my vision started to go black and I told her I thought I was going to pass out.
At that point my vision was black and I was leaning all of my body weight on the nurse. I didn’t know what else happened between then and lying on an exam table with my legs propped up. There were five doctors standing around me. My blood pressure was 70/40, again very low. For the rest of the day I had a headache, fatigue, chest pain and heart palpitations. I felt more fatigued than I ever had in my life.
This was a new issue that I wasn’t really aware of following a concussion. I was eager to see the sports cardiologist and hoped that I wouldn’t have another episode before then.
December 11, 2018 – Sports Cardiology Appointment
My Mom and I made the trip to the city inside of a city, Cleveland Clinic Main Campus, for my sports cardiology appointment. This was an all-day event, starting with an EKG and then an ECHO (echocardiogram or ultrasound of the heart) to look for any structural abnormality. Both were normal. The cardiologist took a very thorough history and physical exam and determined I should wear a heart monitor for two weeks to rule out any arrhythmias. He anticipated that would be normal and suspected I had some form of dysautonomia secondary to the brain injury and so referred me to the syncope clinic the next day. My visit to the syncope clinic would also contain a lot of testing and I was there for almost the entire day.
I had a lot of blood work done and had undergone an autonomic tilt table test. This is a test that determines how well a patient’s autonomic nervous system controls heart rate and blood pressure by recording these measurements in different positions. I was strapped to an exam table while hooked up to a heart monitor, a blood pressure cuff, and pulse oximeter (measuring oxygen levels). The test was conducted over 90 minutes and in increments the table was lifted while recording my heart rate and blood pressure on a minute-by-minute basis until the table was completely vertical. A risk of this test is fainting on the table but thankfully this did not happen to me!
I then had an exercise stress test to record my heart’s electrical activity while active. This was normal other than a weakened response which could be due to deconditioning. I then saw an exercise physiologist who went through the results and gave me restrictions on types of activity and also maximum heart rate cut off for exercise. They also recommended I begin using a heart rate sensor.
After all of the testing, I was diagnosed with a form of dysautonomia called postural orthostatic tachycardia syndrome (POTS). POTS is termed “the fainting disease.” For me, this condition was caused by the TBI and later I would find out that it was complicated by chronic infections.
I will do my best to explain what all of this means because these systems in the body are very complicated.
What Is Syncope?
Syncope is a brief loss of consciousness triggered by a sudden decrease in blood flow to the brain. Lay terms of syncope are fainting or passing out. The person regains consciousness when blood flow adequately returns to the brain. There are various causes of syncope and in my case this is why I had so much testing to identify the cause.
What Is the Autonomic Nervous System?
The autonomic nervous system (ANS) regulates various processes in the body such as breathing and blood pressure. This system works without a person’s conscious effort and works automatically or autonomously. The number of systems the ANS is involved with is phenomenal – heart, lungs, blood vessels, stomach, pancreas, kidney, adrenal gland, bladder, small and large intestines, liver, gonads, mouth, eyes, nose, throat. With that said, the ANS controls so many body processes: heart rate, breathing rate, blood pressure, metabolism, temperature, digestion, urination and defecation, sexual response, production of body fluids, balance of electrolytes and water.
The ANS has two divisions – the parasympathetic system and the sympathetic system. The ANS receives information from the body and either stimulates certain body processes via the sympathetic division or inhibits certain body processes via the parasympathetic division.
The sympathetic system is activated under stressful circumstances and is referred to as the “fight or flight” system. This system increases heart rate, increases breathing, increased blood flow to muscles, causes the pupils to dilate and for you to sweat. This is all activated to escape danger or withstand stress. Because it turns on in emergent situations, other less important functions like digestion and urination are slowed down to allow the energy to be placed where it is needed the most. Through clustered nerves in the cervical spine, this system connects to various parts of the body.
The parasympathetic system controls body processes under normal circumstances and is referred to as the “rest and digest” system. It helps conserve energy, slows heart rate, decreases blood pressure, and stimulates digestion. Through clustered nerves where they connect from the spine into the skull, also known as cranial nerves, this system connects to various parts of the body. If there is dysregulation of any of these clusters of nerves for both systems, unpleasant symptoms can occur.
What Is Dysautonomia?
Under normal circumstances, both of these divisions of the ANS are in perfect harmony and synchronize simultaneously throughout the day to maintain a balance. When the ANS loses this balance and one division becomes inappropriately dominant, this is called dysautonomia. There are several different medical conditions that fall under the term dysautonomia, but all of these conditions are a result of some malfunction in the autonomic nervous system. People with dysautonomia can experience a multitude of symptoms which can be vague but often disturbing.
There are many causes of dysautonomia: neurological conditions, trauma, toxic exposures, viral infections. There is no cure for dysautonomia but symptoms can be managed; this usually takes a lot of time to find a treatment plan that works for each individual.
What Is POTS?
Postural orthostatic tachycardia syndrome (POTS) is a blood circulation disorder characterized by a very fast heart rate that typically occurs during positional changes like when a person stands after lying or sitting. The heart rate can speed up by 30 beats or more per minute. Along with the abrupt increase in heart rate, there can be a drop in blood pressure and ultimately syncope. This condition is more common in women than men.
The structure of the heart, as in my case, is typically normal. For unknown reasons, the blood vessels do not respond efficiently leading to pooling which can then result in syncope because of the lack of blood getting back up to the brain.
POTS symptoms might include but are not limited to: headache, fatigue, flushing, shortness of breath, chest pain, lightheadedness, syncope, tachycardia (rapid heart rate), GI upset, temperature sensitivity, exercise intolerance, cold extremities, high or low blood pressure, sensitivity to light, mood issues, neck tension, sleep disturbance, unexplained aches and pains. The symptoms can be very disabling and diminish quality of life. I have struggled with every symptom listed above.
The disability that can result from POTS has been compared to the disability caused by conditions such as congestive heart failure and COPD.1
There are some very alarming statistics related to this condition. Because POTS is not well understood in the medical community and there is such a prevalence of vague symptoms, there is typically a delay in diagnosis which on average is 5 years and 11 months. Within the first year of symptoms, only about 25% of patients were diagnosed with POTS. About 59% of patients prior to proper POTS diagnosis were told by a doctor prior that their symptoms were “all in their head.” Before properly being diagnosed with POTS, 27% of patients had visited more than 10 doctors. 69% of patients with POTS were initially misdiagnosed with an anxiety disorder before being properly diagnosed.2 Peer-reviewed research has shown that the prevalence of anxiety disorder in POTS patients was not significantly greater than the general public.3
Thankfully, my diagnosis was made promptly after symptom onset.
How Might A Brain Injury Affect the ANS?
The physical trauma from a traumatic brain injury alone can lead to dysautonomia. This isn’t fully understood yet by the medical community and ongoing research is being conducted for more understanding. POTS actually wasn’t found to be a late complication of TBI until recently. Specifically following a TBI, if dysautonomia occurs it almost always involves sympathetic system dominance: this means that you are stuck in this fight or flight state. The body thinks that by doing this it is protecting itself but in reality, this ends up harming you and leading to many problems. This response would be great if I were evading an attack by an animal while hunting for my next meal like our hunter-gatherer ancestors!
What Has Been the Most Helpful POTS Treatment For Me?
Due to the fact that there are so many symptoms one can experience with POTS, there can be an overlap in what exactly is causing them. Unfortunately, there is no way to know with certainty if the remaining symptoms are directly being caused by POTS or just the aftermath of the TBI.
With that said, while I still experience a multitude of symptoms which may or may not be related to POTS, the syncopal and collapsing episodes are finally at a point where I can say they are well controlled. My heart rate has also been better controlled. I have finally been able to identify some triggers for me; some are still unknown. It took over a year from my diagnosis to get to the point where these syncopal episodes are controlled for the most part. While I still do experience moments where I black out, actually fainting and collapsing has become less and less.
We tried countless medications in an attempt to control my heart rate and blood pressure but unfortunately, I was refractory to treatment and experienced a lot of side effects. Some medications I tried without success: nadolol, metoprolol, midodrine, duloxetine, fluoxetine, fludrocortisone, desmopressin. There had been several times where IV fluids had helped provide some temporary relief but this was not a long-term solution.
In addition to the medications I was advised to try compression stockings but unfortunately, they didn’t provide relief and putting them on was a strenuous workout! Something very beneficial has been closely tracking my heart rate. I track my heart rate with a few different devices but the most accurate and useful has been the Polar H10 Heart Rate Sensor, which has been researched extensively.
Under the care of a functional medicine doctor, I was treated for underlying inflammation and chronic infections that I wasn’t even aware of having. I didn’t arrive at a stable point until after I received treatment for these infections so I would like to believe this did have a positive effect on my syncopal episodes. This is why I think it is critical to have a provider who is willing to look intricately to find the root cause of illness.
Anything that adds stress in your life can cause the sympathetic (fight or flight) system to dominate. I have incorporated meditation into my daily practice. Though I am not sure how much of an impact this has had in controlling these symptoms specifically, I believe it is providing positive benefit in other areas of my recovery.
I was advised to increase sodium in my diet to 5 grams a day. It is impossible to eat this much sodium in diet alone so I had to try a few different companies that make sodium packets or tablets that dissolve in water. After trying several, I found a company called Nuun that makes clean electrolyte tablets that dissolve in water and they actually taste good. I drink 1 or 2 tablets a day in my water. I do notice a difference if I don’t drink this on a given day so I believe this is helping.
The most influential and helpful treatment for my POTS diagnosis has been physical therapy, specifically focusing on core and leg strengthening. These strengthening exercises increase muscle mass, directly leading to better blood return to the heart and brain. It was a challenge at first to find a balance at physical therapy because increasing the heart rate is good for concussion rehab and the brain, whereas increasing the heart rate too much can worsen POTS symptoms. After many months, we found a balance and it took about 5 to 6 months to notice a positive change in my POTS symptoms. While I know there is a long road ahead, I am grateful for this progress and the team I have at physical therapy.
- What is dysautonomia? Dysautonomia International: http://www.dysautonomiainternational.org/page.php?ID=34. Accessed February 11, 2021.
- Dysautonomia International: Diagnostic Delay in POTS. http://www.dysautonomiainternational.org/page.php?ID=184. Accessed February 11, 2021.
- Raj V, Haman KL, Raj SR, et al. Psychiatric profile and attention deficits in postural tachycardia syndrome. J Neurol Neurosurg Psychiatry. 2009;80(3):339-344. doi:10.1136/jnnp.2008.144360