This story is simply the truth of my situation. I am not a cynical or pessimistic person and I do not share this to seek pity or validation of victim status. I do not crave attention as some selfish desire to fuel self-loathing. I despise these things. I share this because I feel it is relevant to why I began writing, and because it heavily influences my work. But, most importantly, I share this because I assume many of you who also deal with Dysautonomia/POTS will be able to relate.
Not knowing why you are mysteriously ill, is invariably terrifying. It’s relieving to finally validate the presence of an inexplicable illness through clinical and professional diagnosis. But there is a special relief only enjoyed once one is liberated from the frightening solitude of lonely suffering through relatability with those who share the experience. If you so need it, I hope my story offers that relief. You do not have to suffer in isolation or silence.
To those unfamiliar with this illness, I appreciate your interest. This condition is not well known, even in the medical community. An increase in any type of awareness is helpful.
Growing up in suburban America, I enjoyed a happy life. I went to good schools and had good friends. I was a good athlete and went on to excel in collegiate athletics. I rarely became ill and had always been active. At the time, everything felt normal. But, knowing what I know now, I often look back and wonder about some seemingly innocuous indications, that perhaps something about my body just wasn’t right. It took me a bit longer than my peers to recover from workouts. My heart rate often climbed well above normal ranges during intense workouts. I was susceptible to pulling muscles; especially my hamstrings. But overall, I felt good, was strong and fit, and enjoyed a healthy young life.
Once I reached my mid-twenties I started noticing some odd problems that I hadn’t experienced prior. My healthy appetite became suppressed. I experienced severe heartburn at every meal, regardless the food or drink I consumed. I often felt anxious and panicked without the infliction of some emotional culprit. I first thought I was maybe just out of shape. I had worked out only sporadically since graduating college. But I was still quite fit, and had felt strong until this point. I decided to start working out again. Within a few weeks of running, an activity I had excelled at my entire life, I became overwhelmed with weakness and lightheadedness. The muscles in my legs, once rigid and strong, now felt mushy and soft. It forced me to stop training.
Eventually, these and other new symptoms intensified to the point where I was no longer able to tolerate any running. Within a few strides my racing heart would begin pounding rapidly in what felt like an attempt to burst through my chest. I felt my body crumbling and decaying. I had no idea why this was happening.
I went to see a doctor. She gave me a brief physical. She was not particularly thorough. After she was unable to detect anything physically abnormal, she began a not so delicate onslaught of questions presuming some sort of emotional culprit. I denied experiencing any psychological issues. In turn, she began to insist I was dealing with an anxiety disorder. In her ignorance, she diagnosed me with depression. Medical duct tape, used to hold her arrogance in place. The truth she couldn’t possibly consider, is that she simply didn’t know what was wrong with me. Many doctors used this tactic along the way. I suspect many who suffer from this have had a front row seat to this show far too many times. I wonder if they know they’re dolling out such a lazy catch all misdiagnosis? I think, unfortunately, many are simply too proud to entertain the notion that they may not know the correct answers.
But, I was scared. My body was deteriorating. I didn’t just feel ill, I could see it. It manifested in my ghostly pallor and the baggy fit, of my previously snug clothing. I felt on the verge of death. Within weeks, I had lost over thirty pounds. My body felt incapable of relaxation. Later I would learn that my dysfunctional system was perpetually stuck in the height of a panicked state. I was unable to release myself, unable to come back down. So, I relented and eventually agreed to take the medications. A low dose antidepressant (SSRI).
The medications only made me sicker. My appetite waned even further. It’s difficult to force down food into a constantly nervous stomach. I struggled to consume enough calories. I struggled to find restful sleep. Pleasures of food, companionship, sex, sunlight and so many more all became stresses I could no longer endure. Out of fear, I began writing little notes to my wife. I would tell her how much I loved her, how much she meant to me. I made sure to have one in my pocket before I left for work every day. In that frail state, I am still surprised that I made the thirty-minute drive to and from work for so many months. I was convinced I was going to drop dead.
After a few weeks, I stopped the medication. The severity of my symptoms diminished. I returned to my previous state of illness and deterioration.
I spent most of my time online, trying to figure out what was really happening to me. All my clinical tests had been negative up to this point. But, I knew they were missing something, I knew this wasn’t all in my head. Doctors, ignorant or simply uncaring, were happy to report healthy lab work. “Good news, everything looks normal.” They would say. Maybe they were genuine. But it seemed rather obvious, they felt relieved the hypochondriac would now have to leave them alone and go see a shrink. But, I had been an athlete my entire life. I knew my body. I knew it was broken.
After a few more weeks of searching, I found it. POTS. Postural Orthostatic Tachycardia Syndrome. I took notice of my elevated heart rate when standing. All the symptoms matched mine. I found similar stories through videos and chatrooms echoing near identical struggles of ignorant doctors and misdiagnoses. I quickly found a cardiologist who specializes in treating the condition. Not long after I was in his office. Within minutes of that first visit he confirmed what now had become obvious and diagnosed me with POTS. Finally, a proper diagnosis.
I was excited. He couldn’t provide a source or cause of the syndrome. But, I had confirmation. Affirmation that the know-it-all doctors were wrong. Proof that this was not all in my head. I knew what I was fighting now, so I began to strike back. I started by taking a vasoconstrictor (midodrine) to help restrict blood flow and prevent pooling to my legs. It brought headaches and muscle pain along with general tension throughout my body. But this wouldn’t stop me, I didn’t care about the pain, I wanted a cure. I pushed through the side effects, adjusted dosages, but found no success. My heart rate failed to slow and my blood pressure climbed too high. Nausea, light headedness, weakness all still accompanied me any time I stood. I could only endure this torture briefly, and continued to struggle to stay upright for longer than thirty minutes at a time. The treatment was not working. The side effects grew too severe to hope it would miraculously alleviate my symptoms after extended use. I could no longer tolerate the medication.
But, this was just the first try. Next, I tried florinef. It’s designed to increase blood pressure through decreasing natural salt loss. Instantly it made me ill. My blood pressure sky rocketed and I grew weaker. My dizziness increased and I felt generally sick. I endured its effects for a while, but on my doctor’s orders I had to stop.
The next alternative was to start an exercise program specifically targeted at boosting blood volume, general cardiovascular stamina with a specific focus on building muscle tone in my legs. I pushed the little strength that remained within me. Thirty minute sessions on a recumbent bike a few times a week, alternated by intense intervals on a rowing machine on opposite days. My experience in athletics had taught me how to endure exercise induced pain. So, I pushed through it. Probably in foolish hopefulness, in blind, desperate faith that this would be the cure. But the pain it caused quickly became more intense than I had endured ever before. My heart would pound with alarming veracity, my vision would tunnel on every session. It took hours for my heart rate to calm back down, hours before I fully caught my breath. In my agony, on more than a few occasions I had hoped these workouts would release me, finish me off. It’s a death I could have respected.
Little by little, I was forced to lower the resistance on the bike, shorten my riding times and workout less frequently. My body was no longer adequately recovering after workouts. To try and correct this, I began introducing all sorts of natural supplements. I consumed massive amounts of vitamins and minerals, protein shakes, strict diets of greens and clean proteins and all mater of naturopathic remedies. Perhaps they helped, it was difficult to tell. They certainly were not the cure.
Once eager to visit this doctor, I began seeing him less often. He was running out of ideas, and I was growing weary of the false hope I had grown to expect from each new remedy. On the final visit, he offered a different antidepressant. It worked differently than the previous one I had taken, so I agreed to try it. Upon waking the morning, after having taken the first dose the night prior, my body returned to an unpleasant familiarity of despair and chaos. I could not hold still. My guts felt full of dull needles. My head pounded with rhythmic throbbing of painful pressure. Even dimmed bulbs produced enough light to irritate my sensitive pupils. My skin, constantly covered in goosebumps, felt itchy and shined pale. I felt the urge to tear it from the flesh beneath. But, I did not panic, I knew to stop the medication. By the next day I was back to my now normal state of disease. I did not return to this doctor. I sought out a few others who specialized in my ailment, but they offered no new ideas or treatments.
I had not been ill often in my young life. On the rare occasion I visited a doctor, it involved a quick diagnosis of some innocuous affliction, followed by a simple and successful treatment. But now, amidst this despair of consistent failure, I felt no security in medicine. No relief from seeing a doctor. They had become necessary impediments. A restrictive gate keeper, blocking me from desperate and long shot attempts at finding relief. By this point, I found most to be uncaring, sometimes unintelligent and consistently inadequate. Once they exhausted the text book treatments, I was thrown away to just live with my new normal.
But, I still felt hope. I had to find relief, I couldn’t endure living like this anymore. I sought out a traditional physician who was willing to experiment with naturopathic remedies. He offered to look outside the normal treatment protocols and most importantly, he promised to seek out the cause of my illness.
He tested for anything he suspected as a possible culprit. He shipped dozens of tiny vials, filled with my blood, to the lab. We looked into rare infections, genetic disorders, nutritional allergies and sensitivities, for a start. He prescribed antibiotic regimens for suspected Lyme disease and injected me with EPO (the stuff the cheaters used in cycling), to boost my red blood count. I went in weekly, for some hour-long treatments with some new age magnetic thingamajig. It purported to be able to reset the electronic signals flowing through my nervous system. None of it worked. Symptoms only grew worse after each treatment we tried. I was sensitive to everything.
I continued receiving thorough, aggressive treatment under his care for over a year. Although we experienced no success, at least this doctor tried, at least he listened and sought the truth. I was respected for the first time by a medical professional.
By this point, it had been a few years since I first became ill. After enduring a chronic illness of this magnitude for an extended period, I forgot what it felt like to be healthy. My body had adapted, a natural survival mechanism of sorts, I had grown into this new normal. Somewhere along the way, I managed my way into a consultation with a world-renowned cardiologist. He told me: “We are still in the stone age when it comes to treating this thing.” I appreciated his honesty, but fought to deny this reality when I heard it. But, by this time, dozens of failed treatments later, I had succumbed to it. This new normal was likely to accompany me to my own perpetuity. Only anecdotal whispers, propped up by the desperate need for hope, festering in internet chat rooms, gave any indication that people had cured themselves from the illness. Everything had been tested, everything had been attempted. Either, by some miracle, I would grow out of it, or I would grow to accept it.
The next few years were the most difficult. During one stretch, of nearly a year, I was unable to leave my bed. Bedridden, apathy took aim at my legs. Their muscles withered away, too frail to support me. I kept urinals by the bed. My poor wife was forced to wash her once virile husband, in pathetic fashion, on bedsheets covered in plastic. We kept adult diapers on hand just in case I couldn’t complete the ten-pace climb to the toilet.
Now seven years into this hell, I had fallen to my most fragile. Every few weeks, my sedentary body became too restless to sleep. I was exhausted and desperate for sleep, but it would not come. Inexplicably, I felt antsy and anxious, unable to relax. The level of exhaustion that followed the following days were the worst pain I ever had to endure. It felt as though I had chugged a pot of espresso, after an exhaustive and long day. My eyes would struggle to focus. I was too wired to sleep despite my desperation for it. I’ve heard this common occurrence by fellow sufferers described as “tired but wired”. I find it a fitting description. Eventually, the next night I would pass out and slowly recover. The level of torture on those days is beyond any pain I had thought possible, without inflicting a fatal blow.
I began working with a physical therapist and a new physician, who I still see today. I began with gentle exercises in bed. It helped. I started making small improvements. But so much time had been lost. My time for children, a growing career, a new house was gone. My loving wife, my partner, my best friend, could endure no more. It’s tolerable for some to stay and fight, but not after you know that fight is lost.
I regret not pushing her away sooner. I was selfish. But, to me she was the one. And I knew that I was once that to her. I know it’s unlikely I will find anything close to what we had. I am simply happy that I ever had it.
The time alone is difficult. The loneliness is intolerable. It’s difficult to describe as a man what it is like being deprived of the intimate touch of a woman. It’s a need more than a desire. It’s absense makes a man ill.
Today, as I write this, it has been a year and a half since my wife left and about nine years since I became ill. But, the good news is that I am happy to share that I am in the best health I have been in, since the onset of the illness. I have been working with a massage therapist to reduce fluid buildup in my extremities, and my new physician has been innovative and effective in improving my condition. Through a new supplement regimen and medical massage therapy, I have developed a great deal of strength and stamina. It’s a long way from a cure, but I am continuing to improve. I am much more active and am on my feet often and for long periods throughout the day. I tolerate exercise better and my muscles are more tone. My sleep is more restorative, and I am feel greater energy than I have felt in many years.
My physician, who takes quite an interest in my condition, recently came across some promising research in the field of neuroplasticity. To oversimplify, this means rewiring of the limbic system. Through different, noninvasive, non-pharmaceutical exercises, patients have successfully treated a whole host of chronic conditions similar to my own. I will be beginning therapy soon and plan on posting my progress as I work through the treatments. I am cautiously optimistic about my future for the first time in a long time.
Prior to this affliction, I never aspired to become a writer. I worked in finance and still trade stocks actively. Now that my energy has increased, I felt a compulsion to be productive. For years I felt too ill to feel anything else. Now I feel boredom. It’s wonderful. I have found writing to be therapeutic. But I do it more so because I find it genuinely enjoyable. I get to play with my thoughts, and attempt to make sense of both logic and randomness through creative ideas. It gives me projects to look forward to and I find it incredibly challenging. I would encourage anyone who has not done so to give writing a shot. I would appreciate the opportunity to read your work.
Thank you for your time. If you are feeling so inclined, I would be honored to post your story if you too deal with this condition.