What It’s like to Survive an Electrical Injury

In my ongoing series of articles, which I call the “What isâÂ?¦” series, I describe all sorts of medical tests and experiences from a layman’s point of view. I was inspired to start this series by a wry moment in which I was pondering the amount of money I have paid in HMO co-payments over the past year, and figured I could just write about the experiences I have been having during this incredibly expensive and frustrating year until I was even. The website Associated Content offers (a little) money for such articles, and thus, I decided that I would allow Associated Content help to foot my medical bills, albeit slowly, while I exorcised some medical demons. It was a tiny little justice, but it was mine.

But writing the “What isâÂ?¦” articles have become something more to me in recent weeks. I have been living with a confounding hodge podge of symptoms, diagnoses, and misdiagnoses for many years, and the more I have attempted to solve the puzzle, the more confusing my medical stateÃ?¯Ã?¿Ã?½has become. I would have one test performed to dispel one diagnosis and get a new one thrown into the mix out of the blue. As my host of Ã?¯Ã?¿Ã?½ologists became more frustrating and frustrated, and my primary care physician admitted to feeling “in over her head” with my case, I began to research my symptoms as thoroughly as I could on my own. No one else would ever be as inspired to devote the time and attention, and certainly the interest, than I would. I decided to become my own test case.

I am fortunate, more fortunate than most experiencing a confusing illness, that I work in a major medical center in the city of Boston, which is one of the most prolific cities in the world for medical research. Due to the nature of my job, I have access to a database of medical journals that is second to none. I also possess the knowledge of how to conduct a thorough search of medical papers and gain access to information about studies performed on specific conditions. Still, I kept striking out. My array of diagnoses just didn’t seem to fit any sort of pattern that I could detect.

But, most frustratingly, as tests and studies were ordered for me, I had a terrible time finding information about what I was in for with each of these experiences to come. When my former primary care physician informed me that she wanted to order a test called and “EMG” for me, she responded to my inquiries about what the test would entail by stating that the test was not “exactly torture.” In subsequent internet searches I was able to discover that an EMG was a test that utilizes electrical shocks to determine the muscles’ and nerves’ responses to electrical stimulation, followed by a procedure in which a charged needle was inserted into the muscles of the arms or legs to determine impairment of the nerve response. What I could not find were any case reports from every day people who had been through this test, and who could simply share what they’d experienced. Frankly, I wanted to know how bad it was going to be. And, thus, my “What isâÂ?¦” series was born.

So, what is wrong with me? Simply put, I am a survivor of an electrical injury. I have always known this, but because I walked away from the incident, and it occurred so long ago, it never occurred to me to look into the aftermath of electrical injury as a possible cause of all my problems. It is a condition about which there is very little understanding or study because there are so few survivors that fit into my category, and, much like myself, those that do generally live out their lives scratching their heads over the strange confabulation of seemingly unconnected maladies they possess and never discover the source. I was very fortunate that a particular conversation I had with one of my physicians in the department of Behavioral Neurology just happened to contain enough phrases and juxtapositions that it provided me with an “Ah ha!” moment. I was even more fortunate that this particular physician was savvy enough recognize that although she had never heard of such a thing, it would require looking into. Without that one conversation, I would still be biding my time in the Purgatory of the undiagnosed, fearful, confused, and exhausted.

When I was five or six years old, I snuck into the kitchen of my suburban, Southern Californian home and decided to do something I had never done before. I had just hit that age where the desire for independence was a few steps ahead of the tools I actually possessed to execute that independence. And so, when it occurred to me that what I would really like more than anything was a nice English Muffin, rather than ask Mom to make it (and run the risk that she might inform me that it was too close to lunch time for a snack), I figured that I could just slip in and make it myself. Hey, I was a big girl, and I’d seem Mom do it countless times.

Well, as English Muffins, with all their nooks and crannies are wont to do, my muffin got stuck in the toaster. I problem solved (still feeling pretty good about the new skill I was acquiring), grabbed a knife and stuck it down into one of the slots in the old toaster to pry the muffin free. The next thing I knew I was crumpled in a ball on the floor against the wall at the other end of the kitchen. I had hit one of the electric coils with the sterling silver knife and had been blown straight through the air across the kitchen, stopping when I hit the wall on the other side of the room. My sobs brought my mother running. She picked me up, checked me over, and upon discovering that there were no burns or broken bones, brushed me off and gave me a scolding for sticking the knife in the toaster. And that was that. What has now become one of the most significant experiences pertaining to health of my adult being, was for many, many years nothing more than a family anecdote.

Now, I will preface the report of the onset of the various symptoms I have experienced throughout my life by sharing that I am an adopted child. As my body became quirkier and quirkier, my family and I were content with the knowledge that we did not have a reliable medical history for me, and therefore found it easy to shrug off certain occurrences of symptoms as possible inherited traits.

The first problem I experienced was the onset of migraines at the age of about twelve. Migraines are fairly common, and adolescence is a typical time for them to begin to occur, and so nothing much was made of them. The only significance of my migraines when compared to so many peoples is the severity. The stabbing pains in my head fall right up at the top of the severe range. Without the proper medication, and there is only one that works for me, I vomit until I end up in the emergency room for pain control and IV fluids. However, as I am hardly unique in this, no special investigation into the source of the migraines seemed warranted. We did the usual checks- an MRI of the brain to rule out tumor, checking for allergies or sensitivities to foods (certain foods like chocolate and aged cheeses are the culprits in many migraine cases), biofeedback therapy to help me to gain some control over the tension in my muscles. In the end it was determined that I suffered from migraines, etiology unknown.

Many years later, when I was in my mid twenties, I began to have some trouble with my arms. They grew progressively numb over a period of days until it reached a point where I could not hold a pen. I saw my doctor who decided that it was probably a pinched nerve, and as it resolved itself in time, nothing more was made of it. Over the years the numbness would return and disappear, and soon my feet and legs were involved as well. I continued to see my doctor about this, but she did not know what was causing it. I also relayed to her that I had very little sensitivity in my hands and feet, and that this had been the case for as long as I could remember. Growing up, I just thought that I had very strong skin. I was the girl who could run around barefoot over black asphalt in the hot Southern Californian sunshine and remove things from the oven without an oven mitt. As I grew, I began to suspect that perhaps these abilities were a little more than “strong skin,” and when the numbness began, I was more suspicious, still. After a few tests, including another MRI, it was determined that I suffered from peripheral neuropathy, etiology unknown

And then the problems with my memory began to grow evident. Having always been considered a little bit absent minded, despite a high IQ, problems with my memory were always just chalked up to lack of attention or possibly to a side effect of the medication I must take for my migraines. As I aged, however, I noticed that the short term deficits I possessed were beginning to effect my daily life, and I ruled out the absent mindedness I had always been accused of, as I was trying everything I could to compensate. I saw my doctor again, and another negative MRI later it was determined that I suffered from short term memory deficits, etiology unknown.

Then one day, just over six years ago, everything became very confusing and scary. I was hit by a migraine that was nothing like anything I had experienced before. I can always depend on experiencing what is called an aura before the pain hits. During the aura, I experience blurry spots in my vision, sensitivity to light and sound, a general cognitive “fuzziness”, and a tingling sensation in my skin. These auras will last anywhere from ten to forty-five minutes, and although they are disconcerting, it is a good warning sign that I need to take my medication before the pain comes on (taking a dose once the migraine is in full swing is never anywhere near as effective for pain management, as the pain becomes what I call “entrenched”). Then I simply get to where I need to be for the duration of the migraine (preferably home, work is out of the question). But that morning I woke up, stood up to go to the bathroom and was suddenly struck by an abrupt surge of all the symptoms I typically feel during an aura and then immediately was hit by a crack of pain so severe I had to be taken directly to the emergency room. I was experiencing what is called a “flash migraine”, which had never occurred to me before.

At the emergency room, it was decided that I would need another MRI to rule out any physical problems in the brain. As the doctor was taking my history, I related the problems I had been having with the peripheral neuropathy and the memory problems. He informed me that I would need to see a neurologist because it sounded to him like I should be examined for Multiple Sclerosis.

And in that moment, I felt like my world was falling apart. I had just met the man who would later become my husband, I had an incredibly busy and active job managing group homes for people with developmental and physical disabilities, and frankly I was spread a little thin to be considering the possibility that I had a demyelinating, progressive disease that would likely leave me disabled. Compounding matters, my new life partner, whom I was (and remain) absolutely crazy about is blind. I was the driver. I was the shopper. We had come up with a beautiful division of labor in the relationship and I was, quite frankly, freaking out.

So, I saw the neurologist who looked me over, played with his tuning forks and pointed sticks and said the magic words “this is not MS.” I was overjoyed. When he told me that I was suffering from another disease called Charcot-Marie-Tooth, I could not have cared less, I was just so relieved. Charcot-Marie-Tooth, or CMT, is also a progressive disease, in the same family of neurological diseases as MS, and involves numbness (neuropathy) of the limbs and appendages, and wasting (atrophy) of the muscles and soft tissue, but none of the cognitive impairments, paralysis, or sudden attacks that MS can cause to occur.

I walked out of that office a happy woman, and decided not to think too much about the fact that while I certainly had well documented neuropathy, my muscles and soft tissue were hearty and hale- showing not even the slightest sign of atrophy. I also ignored the fact that by this time I had come to know my biological mother, and had known my biological father for a short time in the past, and neither of them had ever mentioned CMT, which is exclusively a hereditary disease. I chose, instead, to assume that I had inherited the disease from my father’s side of the family, and that it had never occurred to him to disclose that there is a progressive, highly inheritable (50% chance) neurological disease running through my gene pool. It sounded right to me.

And I tried not to dwell on the fact that each time I saw another health care provider who works with CMT patients (podiatrists, adaptive brace specialists, even my primary care), they would remark on how “atypical” my case was. Hey, I had a diagnosis I could live with, and nothing was going to take it away from me.

Or so I thought. Over the last two years there have been evolutions in my symptomology that have forced me to take an honest look at my happy little CMT diagnosis. Added to the problems I was already struggling with, about 21 months ago I began to experience dizziness and vertigo, which in its acute state was severe and then settled into a mid line, persistent, chronic state. I saw my primary care, and once again she was baffled. Back into the MRI machine I went. I was seen by an otolaryngologist and an audiologist to rule out vestibular problems, and also had extensive vestibular testing performed (the testing is not pleasant if you’re already dizzy), saw the world’s leading specialist in dizziness and vertigo, and once again, nothing was determined. Possibly converted migraine? That was the closest the specialist could come. Essentially it was determined that I suffer from dizziness and vertigo, etiology unknown.

And then my biological father chose to drop back into my life, once and for all extinguishing my last drop of hope that I suffered from (relatively) benign little Charcot-Marie-Tooth. He had never heard of the disease, which is virtually impossible if there was a history of it in his family. I was a bit desperate. Could I be a spontaneous mutation?

And then my arms began to experience severe pain and numbness at night. I had lived with the neuropathy for years and thought I knew all its tricks, but I had never experienced the excruciating pain I was now experiencing, which seemed to come up out of nowhere. I was prescribed a muscle relaxant called Flexoril to calm any muscle spasms that might be causing the pain.

Two days later, I was driving in my car and was suddenly overcome by dizziness so severe that I thought I would pass out. I pulled over until I was able to see straight and drove myself to the emergency room of the hospital that is responsible for my care, which was thankfully less than a block away. After a thorough examination, and reaffirmation that I needed to be once again evaluated for MS, it was discovered by an EKG that I possess something in my cardiac electrical system called a “short pr interval.” This short pr causes my heart to experience arrhythmias, which would finally explain my dizziness. I was immediately taken off the Flexoril and all caffeine and any other medication that might be stimulating, and I noticed a decrease in my dizziness within a few days.

Now, besides needing a good Neurologist, I needed a Cardiologist as well. My body was seriously starting to piss me off. How could one basically healthy person have so many unconnected things wrong with her?

Once again, I was back in the MS dance. I was set up by my primary care physician with the EMG, which could definitively diagnose or rule out Charcot-Marie-Tooth (and which was not ordered by my first neurologist who had diagnosed the CMT). The EMG did rule out CMT, but threw Carpal Tunnel Syndrome into the mix. Another malady, apparently unrelated to my other problems. Just throw it on the junk pile. The Carpal Tunnel was considered very advanced in a woman my age, and was not due to repetitive stress injury. It was spontaneous and unexplained. And it was definitely responsible for the advancement in arm pain I had been experiencing.

I then saw a neurologist at the MS Center in Boston, and he felt, like the neurologist before him, that I did not have MS. He ordered another MRI of my brain and spine, which confirmed his findings. This time I was not able to feel the elation I felt the first time I was told that I did not have MS, there was just too much going on. It appeared that my body was falling apart piece by piece and no one could figure out what was happening.

Fortunately, the next step taken was to set me up with some cognitive testing to find out what sort of deficits we were looking at in the old noggin. The results of those tests were the first illuminating bit of information I had ever received during this decades long odyssey. The cognitive impairment I was experiencing and had been experiencing for so many years were determined by the testing to be caused by impairment to the frontal lobes and to the white matter tracks.

I sat quietly for a moment, absorbing what my doctor was telling me. I just looked at her and said “I don’t know what Ã?¯Ã?¿Ã?½white matter tracks’ are. Are they some sort of information conduction system?” She responded that they were. And so I added “there is a problem with the conduction system to my heart, and to the conduction system of my brain? Are you telling me that I am basically short circuited?” She smiled and shrugged and said that my phrasing was probably not an inaccurate characterization.

And then everything just opened up inside my brain and a strange calm, calm that I had not felt in almost two years, settled in. It was the “Ah ha!” moment, and I knew the answer before even I posed her the question. “Could this have anything to do with the fact that I was electrocuted (sic) as a child?” And I saw a knowing look pass over her face as well. “That is a very interesting question,” she said. “I am going to need to look into this.”

Well, that was all I needed to hear. I returned to work, logged into my database of medical journals, and let some steam out of those search engines. What have I found as documented results of electrical injury? Well, let’s tally it up. I have found papers about the relationship between electrical injury and severe migraine, peripheral neuropathy, short term memory loss and confusion, Carpal Tunnel Syndrome (occurs in 10% of cases of hand-held electrical injury), and disruption to the electrical conduction system of the heart. The documentation is challenging to find, as I mentioned earlier, there are very few cases documented. Also, correct phraseology has to be discovered before a search can be successful. For instance, until I began my research, I was ignorant of the fact that the word “electrocution” referred only to cases in which the electrical injury resulted in death. Therefore, there is very little literature available to be discovered from a search on the phrase “symptoms of electrocution,” as the only symptom would therefore be death. The phrase “electric shock” brought up scores of papers on Electro Shock Therapy, but was not helpful to my endeavor.

So what’s it like to live with the aftermath of an electrical injury? It’s frustrating. It is ever changing. It’s hard to trust your body, as you’re never sure when new impairments are going to present themselves as the body ages. And there is definitely a feeling of insecurity whenever you have to explain your problems and their causes to a new doctor who has never heard of anything like it.

But, it’s fine. I am now able to take my symptoms apart one by one and determine which are treatable. The neuropathy is not likely to go away, but now that we know that there is Carpal Tunnel going on in there as well, some of my pain and numbness will be relieved as we treat that part of the equation. With the aid of braces that I wear at night, I have already been able to reduce the pain significantly. The dizziness is also very much improved now that we know that it is cardiac in nature, not vestibular, or the result of “converted migraine” for which we found no successful treatment. The impairment to the frontal lobes and white matter tracks are not likely to improve, but there is nothing that suggests that they will degrade, either. I’ve been compensating for those problems all my life, and I was clever enough to marry a man with a photographic memory.

So here it is, my magnum opus, the completion of my “What isâÂ?¦” series. I have tried very hard throughout this article to use both clinical and casual terms, so that anyone searching while struggling to find out what is wrong with them will be able to find some results, or at least some input on how to go about getting an answer to the seemingly unanswerable. And I will say this, it is dangerous and counter productive to try to diagnose yourself for any kind of illness or problem, but there is nothing that says that you can not work in partnership with your physicians, sharing with them the information you are able to obtain and receiving their feedback. You are your own best advocate and certainly your most interested party.