A Trip to Georgia for Intensive Brain Rehabilitation

In February of 2019, four months after sustaining my brain injury, my uncle who lives in Georgia and works in the sports industry called my Mom to tell her about a doctor in Atlanta who was treating concussion with great success, especially with many big-time athletes. My mom and I called the office for a consult. It sounded unlike any treatment I had already tried and seemed promising.

Despite the fact that it sounded promising, I was hesitant and nervous about it. My bills were piling up from all of the treatments I had sought out which had become an additional stressor. I was nervous about traveling and experiencing the busy environment of the airport. I was nervous that the flight would exacerbate my symptoms.

It happened fairly quickly and the next day, with a push from my Mom, we were booking flights to Georgia for a week for an intensive neurorehabilitation program at Innova Brain Rehabilitation, now called Plasticity Centers.

I had looked into the treatment further which had received a lot of press over the past several years after Sidney Crosby of the Pittsburgh Penguins credited his concussion recovery success to Dr. Carrick, the founder of the Carrick Institute, which trains providers in clinical neuroscience and rehabilitation such as the doctors I would work with at Innova. Crosby had suffered several concussions and missed nearly a year of hockey as a result and in that time period, he had received treatment with Dr. Carrick who founded the field of functional neurology, also referred to as chiropractic neurology. Many other NHL players and professional athletes have had success with this treatment for their concussions.

What Is Functional Neurology?

Viewed by some as controversial or unorthodox, functional neurology combines neurology with chiropractic care. Functional neurology is a holistic approach, focused on the rehabilitation of the nervous system by identifying specific areas of miscommunication and dysfunction in the brain and treating those areas with a rehabilitation program. This treatment is deeply rooted in the process of neuroplasticity.

Neuroplasticity is the brain’s ability to reconnect dysfunctional communication systems or form new neural networks. This involves an in depth evaluation of the various systems of the brain. By using repetition exercises of the dysfunctional areas, the goal is to either strengthen or grow new networks within the brain. This is similar to exercise and using repetition to increase the strength of a muscle. In order to get bigger muscles, you must use and train them. The same concept flows into neuroplasticity and with repetition and exercises, the areas in the brain that may be weak or not communicating properly can strengthen connections and begin to work effectively again. This is the same concept used in neuro-optometric rehab.

The Carrick Institute is a postdoctoral education program where Dr. Carrick’s method of brain rehabilitation is taught. This is an additional three years of studies beyond chiropractic school completion. While many chiropractors go through this program, it is available for other providers too. This extra specialization allows a deeper understanding of the nervous system and how to treat problems that may arise. The goal of this treatment is to get the systems working together again. This involves waking up the deficient parts of the brain and also strengthening the communicating parts of the brain to make them more efficient, increasing endurance and then getting them to work in harmony again.

Using various tools and types of stimuli, these areas of the brain are strengthened. These tools include but are not limited to: whole-body gyroscope (GyroStim), which is a rotating chair that spins in various directions to stimulate the brain (picture and video of this later), electrical stimuli, laser therapies, light therapies, visual input, proprioceptive therapy, balance exercises and multi-tasking.

Touch Down in Atlanta

After an exhausting and symptom-provoking airport and flight experience, we made it to Georgia. I knew day one was going to be long and draining. I caught up with family which was wonderful. I was and am still so grateful I had a very welcoming place to stay. I got to bed early in anticipation of day one. It was nerve-wracking.

The familiar questions before new treatments scattered through my mind. Could they help? What if this is another dead end? Would it be worth the expense? At the end of the day, I was so desperate for something, anything, to work. The smallest chance that this could help was enough to propel me forward.

Innova Brain Rehabilitation

From the start, we were met with open arms. Literally. I received a big hug from Leslie, the care coordinator. She definitely made up for my lack of energy, in a good way. I then met Dr. Duffy and Dr. Patterson. I knew we would have a special bond and this group would soon feel like family.

I had to fill out forms including a symptom checklist with a scoring system of 0 (none) to 6 with 5-6 being severe. My severe symptoms included: headaches, pressure in head, dizziness, sensitivity to light, feeling slowed down, feeling in a fog, don’t feel right, fatigue or low energy, more emotional, sadness, trouble staying asleep, eye pressure, tinnitus, jaw pain. Moderate symptoms included: neck pain, nausea or vomiting, blurred vision, difficulty concentrating, irritability.

We wasted no time and got to work. I sat down with Dr. Duffy in an exam room where we went over my injury, symptoms, imaging results and treatment modalities tried up until that point. This was the first time the reality of the situation started to settle in. He was the first provider to tell me that I absolutely could not afford even one more hit to my brain. I think somewhere within me I knew this was the case but I wasn’t willing to accept it just yet.

The reality was hard for me to accept but I was somewhat relieved to hear a strong perspective on the issue that was tormenting my mind. At this point, I was still holding on to the thought that somehow it would be worth it for me to play hockey again. The truth is, I really wanted one of my providers to make the decision for me so I could be done with it. I wanted them to make it for me because I wanted to be reckless. And really, I had been reckless for the majority of my hockey career. It was as if I needed protection from myself. This was a start, though I continued living in denial for quite a bit longer. It still seems silly in retrospect that I held on to that idea for so long even though I was never even close to having the opportunity to play again.

I have come to realize that sometimes the idea of something is so much more appealing than the reality. I had come to love the idea but not the reality. And this was a hard truth I had to grow to recognize on my own. I wrote this in my journal during my recovery:

When will reality become better than my dreams?

I took the recommendation from Dr. Duffy where it would marinate for quite some time and we moved along.

Comprehensive Testing and Results

The exam was long and grueling. While I summarize a lot of it here, there was so much more conducted and assessed that I have not included. We first started with my vital signs – blood pressure and heart rate. My gait was then assessed. I walked down a long hallway and then making things a bit more complicated, he had me complete random tasks such as saying the alphabet, then saying the alphabet backwards while walking. I didn’t realize this could be such a difficult task.

My gait demonstrated no left arm swing. Arm swing during normal walking can indicate how well the brain is functioning. By adding dual tasking or asking me to say the alphabet while walking, the doctor assesses for any change in arm swing. This is a useful assessment for persons with neurological disease.

Luria’s test is a test that assesses frontal lobe damage or dysfunction. It involves the performance of three different hand motions. My result showed the movements were decomposed on both sides, suggesting I suffered frontal lobe damage of my brain.

Perfusion index is a measure of blood flow to peripheral tissues and can give a look into the autonomic nervous system. This is measured with a sensor on the fingertip similar to that of a pulse oximeter which measures heart rate and blood oxygen levels. It is supposed to be between the ranges 1.5-4. My PI was 0.32, suggesting dysautonomia, along with many other findings. As a reminder, dysautonomia is a dysfunction of the autonomic nervous system.

A bruit is a vascular sound heard through a stethoscope that is a result of turbulent blood flow. Bruits were present over the left subclavian and both carotid arteries, suggesting dysautonomia.

The pupillary reflex is a look into the function of cranial nerve III. The findings suggested decreased brain function. My left pupil was fast to fire and fail. The right pupil demonstrated hippus, which means the pupil constricts and dilates back and forth. Interestingly, this term is rooted in Greek origins from the word hippos which means horse so it has been suggested the name was given as the fluctuating movements of the pupil resemble that of a galloping horse. This fluctuation in the pupil reflects varying signals from the nerves responsible for autonomic functions. Again, this points to dysautonomia and an imbalance of the sympathetic and parasympathetic nervous systems.

Several movements were performed and assessed which evaluated fine motor skills and function of the cerebellum. Rapid alternating movements of the arms were slower on the right, suggesting decreased cerebellar function on the left. Finger-thumb tapping showed sluggish action on both sides.

The Maddox rod test is a test used to evaluate the diplopic function of the eyes, or the eyes functioning together on a target. One eye visualizes a line while the other visualizes a light. In normal functioning of the eyes, the line and light should overlap. When I did this test, the line was many inches away from the light. What they found on exam was exodeviation or the deviation of the eye outward. They also found hypotropia which means one eye drifts downward. The result of this is each eye is seeing a target at different points in space which can lead to double vision and other visual symptoms.

Convergence testing which measures how the eyes come together to focus on a target at near showed failure at 9 inches with both eyes shifting to the right. For reference, normal convergence in healthy eyes should be around 3 inches.

Further assessment of the cranial nerves showed a low hanging palate on the right, representing dysfunction of cranial nerves IX and X. My balance was tested which actually wasn’t too bad.

Then things started getting complicated. By complicated, I mean exceptionally difficult and draining. Visual eye tracking via video-oculography was performed, assessing eye reflexes and movements. Sitting in the chair not focusing on any target in pure darkness, my eyes demonstrated right beating nystagmus. Nystagmus is an involuntary, quick rhythmic movement of the eyes.

Focusing on a stable, non-moving target in various gaze positions, my eyes showed square wave jerks. These jerks are also involuntary movements of the eyes but consist of an initial sudden movement from the intended fixed target followed by a second quick movement in the opposite direction. On the video and graph result of my eyes, it looked like tiny, spastic movements that I named tiny eye earthquakes.

Pursuits were assessed, which are large fluid movements of the eyes to track a moving object. Again, with these movements, I experienced the tiny eye earthquakes. This threw off my tracking of the object and I was left feeling dizzy, nauseous, off balance and with an increased headache.

Quick eye movements between targets called saccades showed a prolonged latency, which is the measure of time it takes for the nervous system to trigger this movement. My latency was prolonged, which is a typical finding after brain trauma or neurological conditions.

The hardest part of the testing was when we got to the optokinetic reflex (OPK). The OPK is the reflex that allows us to follow objects in motion while our heads remain stable. An example of this is when you are driving down a tree-lined street or a construction zone with orange cone after cone. As you pass each tree or cone, this reflex allows you to stabilize the image and still allow you to recognize where you are at in space by the quick adjustment of the eye as the tree or cone moves out of your field of vision. In a healthy pair of eyes, they will quickly jump back to the original location of target. My OPK was egregiously off as shown by my results but also the test itself left me so dizzy, nauseated and almost to the point of vomiting. This would explain my issues with tracking moving objects, sickness in the car and inability to scroll on my phone.

The vestibular ocular reflex (VOR) was also deficient. This reflex is used to stabilize your gaze while moving the head due to activation of the vestibular system which allows you to maintain balance and equilibrium if working properly. This gives you an idea of how the visual system is working with the vestibular system. As a matter of demonstrating why the OPK and VOR can give such an indication of brain function is how many areas it takes to stimulate these reflexes. Both reflexes are stimulated by neurons located diffusely in the brain.

The results I received made me feel validated. Having no objective data of my deficits leading up to this point was difficult for me to understand. I struggled to understand my brain and body and having nothing to show why I was feeling the way I did left me feeling invisible.

In short, my results showed major short circuiting in various areas of my brain. My eyes were the most troubling. My autonomic nervous system was in a state of fight or flight. I could not hold a stable gaze on a target that was not moving and my eyes were spastic even when not focusing on any target. How would we get all of this to start functioning properly again?

Rehabilitation/Treatment

My rehab was intense and grueling, with each day being eat, sleep, rehab, repeat. Rehab consisted of starting with the basics and fundamentals which was gaze stabilization and getting the eyes to be able to focus on a non-moving target. As time went on, we added movement of my body while my eyes continued to focus on the target.

Chiropractic manipulation was used to not only get my body in balance but to also give my brain good positive reinforcement and feedback. Proprioceptive feedback is important for the brain and body because it allows you to sense your position in space. My brain needed repeated positive feedback because it was constantly out of equilibrium. It was determined that my first left rib was stuck which improved with manipulation. Interestingly, my left jaw had begun popping and clicking since my injury and this was the first time it was suggested that the neck should be looked at more closely as that was most likely where it was originating from. My shoulder was a mess from my surgery just two months prior due to failure of rehab, so manipulation of the shoulder was also done.

Electrical stimulation was used to stimulate the second branch of cranial nerve V. This would stimulate the nuclei located in the pons, the largest part of the brainstem that houses a group of nerves. This is important for sensory and motor communication in the brain.

The GyroStim machine became my best friend. I felt like I was preparing for a NASA takeoff to outer space. The GyroStim is a multi-axis rotational chair, invented by an engineer in his basement, desperate to find a way to help his daughter who had suffered from cerebral palsy. The movements of the chair were theorized to stimulate the vestibular system, motor control areas in the brain and wake up dormant neural networks. When he noticed major improvements in his daughter, this device slowly made it into the medical community. Interestingly, the first sale of this chair was to the Air Force Academy.

The chair even does flips! No flips for me, though. Flips did eventually occur later that year when I completed another intensive rehab program in functional neurology, but that’s another story. During this treatment at Innova, I moved slowly left to right in the machine as I fixated my eyes on a little smiley face sticker. It was difficult for my eyes at first but became easier each time and my autonomic nervous system seemed to love it too. My perfusion index which again is supposed to fall between 1.5-4 improved to 1.8 from a whopping 0.32. It continued to rise the more we did it, maxing out at 2.3. Attached at the end is a video showing this futuristic device.

Passive figure 8 movements called complex proximal joint movements of the right leg and arm were done in opposite directions to stimulate the left cerebellum. Attached at the end is a video showing this.

The last day consisted of repeat testing, one last hoorah in the GyroStim and education on my home exercise program.

Major Improvements and Home Assignments

By the end of the week, I was feeling improvement which was amazing. I remember being so happy to feel some relief, I couldn’t help but cry. While I was still far from “normal,” I was sleeping better, my pain had decreased and many of my other symptoms had improved too. The initial symptom checklist I had filled out showed many of my symptoms decreasing to the mild or moderate range rather than severe.

Home assignments were given. With the repetition of the exercises, this was supposed to stimulate my brain to make new connections. This was also supposed to help stabilize my vision which was so terribly wrecked at this point. The improvements and gains I made in Georgia came home with me.

Very religiously each morning, my Mom or Dad would assist me with my home exercise program. Two of the exercises were called sinusoidal pitch movements which were to mimic the same movements in the GyroStim. My parents would push me in a rocking chair, slowly forward and back as I stared at a sticker on the wall to stabilize my gaze. We would then move over to an office chair, where I would be rotated slowly side to side as I stared at a sticker on the wall.

We were to continue the complex proximal joint movements or figure 8 movements at home. Lastly, I was also given breathing exercises and stretching exercises to open up my chest. All of these exercises would be repeated and done twice a day.

The Inevitable Decline

As I continued the home exercise program, I was feeling hopeful but after about two weeks of being home, things started to reverse. Despite religiously doing the assigned exercises, all of my symptoms came flooding back to the intensity they were prior to my trip. I was disheartened, devastated, hopeless, and again could feel myself being drawn back into the dark place I had become so familiar with.

It was hard for me because I again took it as a reflection of me. I was trying my hardest with the exercises and it still wasn’t good enough. Why couldn’t I make it stick? I decided maybe if I just increased the exercises and did them three times a day instead, the gains would come back. They didn’t. I lost them. I could not understand why.

I understand now. While they did a deep investigation of identifying the areas of my brain that were not functioning properly and assigned the rehab exercises for those specific areas, it was not sustainable. It was not sustainable because of the underlying problem of rampant inflammation and neurosteroid imbalance. My brain could not hold on to the gains because it was simply not prepared to receive or keep them.

I’ve discussed previously that maybe the timing of a treatment is just as important as the treatment itself. I truly believe there is major benefit to functional neurology, but I don’t believe I was at a point where my brain was ready to receive it and hold on to it. How could those improvements thrive in a brain riddled with inflammation? And one without the proper levels of neurosteroids, potent regulators of neuroinflammation.

It was a safe space for my brain that made it feel good. But once I left that space, my brain faced that familiar reality – the perception that everything was a threat and inundated with inflammation. The intensive positive input I received day in and day out from rehab was gone and so those connections became weak and lax, falling victim to the diffuse inflammation throughout my brain. There was nothing to combat it.

While at Innova, I thought, this is the missing puzzle piece. This is the thing that will get me better. While it didn’t turn out to be that, it did bring me a little hope to keep going and it brought me a reprieve from my symptoms for even a brief moment, which was more valuable to me than anything leading up to that point. It also opened my eyes to the deeper issues within my brain and my vision, which ultimately led me to find a neuro-optometrist which has been a huge, much needed resource. It also led me to explore the role of my neck in my recovery which had been neglected up until that point. I truly believe functional neurology can help patients whose brains are ready to receive the benefits and hold on to them.

By the end of day one, the Innova staff felt like they were family. We still keep in touch to this day. They treated me with kindness and care and brought me much needed hope. That is something that I will be forever grateful for.

Sources

Chiropractic Functional Neurology: An Introduction, 2017. PMID: 30881237.

The Fainting Disease: POTS

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.

Sources

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

Tag: dysautonomia