For Balance Awareness Week 2014: 15 September through 21 September
Ever have an MD tell you that your symptoms you describe are impossible? That you are faking being sick? As part of Balance Awareness Week, the latest piece on vestibular disorders and other invisible illnesses with links to other personal experiences.
Balance: A state of equilibrium
Equilibrium: A stable situation in which forces cancel one another; a sensory system located in structures of the inner ear that registers the orientation of the head
To maintain balance, so simple yet highly complex, often taken for granted, never thought about, until…
I’ve been active since childhood. When I started kindergarten my days before the school bell began with some responsibility out in the fields, in the packing shed, or if Grandpa didn’t have a chore for me, Mom or Dad certainly had at least one. Those morning duties have never stopped regardless of my physical location.
In elementary school we always played some type of game, basketball, football, kickball, softball, before the bell summoned us for homeroom. If we didn’t have a ball or something to serve in that capacity such as a pine cone, we played “chase” and what we called “team chase” which was a freeze tag game with two teams instead of individuals. We played these games on a lot larger than a football field and probably ran the equivalent of miles just participating in before school fun.
I remained active in my 20s and continued studying various styles of martial arts even though graduate school required a lot of time which decreased my activity level to that of a weekend competitor. Landing a tenure track position and the related responsibilities lessened even the grad school decline. Still I could complete a 10K without any difficulty. I just needed 2 weeks to get my shins and feet acclimated to not experience real soreness the next day. I could lie on a flat bench and do multiple sets of 10 with about 50 pounds more than my body weight. Due to a shoulder issue from competition, I never maxed out as weights above 4 plates caused pain. I might not have always looked the part, but I had never failed to do the walk.
Really, I was in my 30s, and I never imagined having to relearn how to walk at that stage of life.
I was not involved in an accident. I had no visible injuries or even an illness.
Suddenly, however, I felt as if my body was in a state of irregular but constant motion 24 hours a day, 7 days a week. That sensation subsided occasionally but always remained present, and then it worsened to the point of having no control. I first noticed it while delivering a lecture to an 8:00 AM class. I thought a truck or maybe a plane had struck the building. The students, however, felt nothing as I stumbled and caught myself on a table which kept me from hitting the floor.
I looked “normal.” I was still as ugly as heck with my large prominent nose, but I’d been ugly and big nosed since birth. Despite the outer appearance, the new normal of what I felt compared to having to balance myself on top of a small piece of plywood bobbing in 4 to 6 feet wake in the Gulf of Mexico. I had previously experienced that type of wake more than I few times when caught in a squall on a small boat in open water, and the influence on my body back then was nothing compared to what I felt inside my head while looking “normal” on steady dry land.
A family practitioner MD diagnosed an ear infection, but I did not improve. An internal medicine MD reached the same diagnosis but also checked my cardiovascular system as my BP was elevated into that pre hypertension range. His treatment did nothing to help my condition. An ear, nose, and throat MD said that I had no fluid in my ear, had good hearing and my problem should take care of itself and later I might consider doing something for my deviated septum. The subsequent visit to the internal medicine MD resulted in a lecture. He claimed that what I felt was not possible and that I was faking. That was his learned opinion based upon his schooling and experience.
Well Doc, everyone in the room at that time, you, me, and my wife, each had a similar amount of schooling. You did have more experience but only because you were born years before the two of us.
Not having your level of experience, I must acknowledge today that I picked a bad time to “fake.” We were between semesters and even if we had been in session during my short time at the school I had accrued enough leave time to sit out well beyond a semester and receive full pay and benefits.
In addition to time I had in reserve, I had access to additional time. A few years earlier at the urging of senior faculty I presented and helped get a plan implemented at the campus which created “sick leave banks.” The impetus for the plan involved a faculty member in another discipline who was severely injured in an accident. His time on the job combined with his accrued leave fell just short of the time he needed to receive his retirement pension. One could “buy” service time with any unused leave time to retire early if they desired. Some of the most senior faculty members who were retiring that year had years of unused leave time. The adoption of this plan allowed for them to donate a portion of their leave time to our colleague. It was another reminder of the unexpected at the time. I didn’t know the man well, but the semester prior to the auto accident he chaired my tenure review committee which issued a glowing endorsement for me to receive tenure the following academic year.
My wife and I had decided to leave the institution prior to my complete debilitation. That’s rare since we would both be tenured at the end of the next academic year, but honestly we just could not see ourselves in that location for the remainder of our careers. Of course I have no clue as to what, if anything would have happened if we had planned to remain, but a number of tenured faculty members throughout the campus offered to donate their unused leave time to me once they saw my physical demeanor firsthand. Who knew at the time that our decision to leave turned out for the best professionally for her and probably saved my life.
The MDs accused me of faking. Some members of the administration and colleagues did not believe me. Even a few people I considered friends with to great lengths to avoid any contact or communication. That was rough. Some friends, colleagues, my wife and her family along with my Dad back home in Louisiana, and a number of former students did believe that something was wrong with me. They just didn’t know what and neither did I.
How did I feel? Let’s say that at times I moaned in agony as I tried to brace myself from sliding off that piece of plywood. I knew that I was still. I knew that I was on a solid surface. My body, however, felt otherwise.
The nausea was unreal. I kept a journal of everything I ate and things that happened to try and discover the cause of this motion. Peppered throughout those listings is a code, “UC,” which referred to “upchuck” or vomiting as my Grandparents used to say or “throwing up” as my Mom and Dad referred to the action. For more than a calendar year, few days were without multiple UC entries. Phenergan and similar anti-nausea remedies actually made me feel worse and increased the number of those UC entries.
My other senses reacted differently as well. On more than one occasion it felt as if someone had poured gasoline into my ears and set them on fire as someone else dropped a wood splitting maul repeatedly on both temples. I experienced hyperacusis, an over sensitivity to sound. As my wife remarked, I had never heard of it until Richard faced it. I still remember trying to watch television in another room with the volume at level 1 and having Richard ask me to stop blaring the TV. She even underwent a hearing test because she couldn’t hear half of what I heard.
That’s a brief glimpse of how my life spiraled. Our move to Maryland did not bring immediate dividends in regard to my health. I became bedridden while doing vestibular rehabilitation exercises prescribed by yet another ENT, and an assortment of medication prescribed by a neurologist. It required the research skills of a compromised history professor and an overly stressed political scientist to lead us to getting an appointment at Johns Hopkins with an MD, PhD, who is the current Director of the Johns Hopkins Vestibular NeuroEngineering Laboratory. It was the first time that I encountered a medical professional who believed my description of my symptoms. He not only listened to what I said, but he described other symptoms before I related them to him.
He then referred me to his friend and colleague, another MD, PhD, and a neurologist who is the Founder and Chief Medical Officer at NeurExpand who confirmed the vestibular issues present.
I knew that I had not been faking. It shocked me, however, to discover that my problems were hereditary and that I had actually dealt with them since possibly childhood. As a kid, teen, and adult, I honestly believed that everyone felt like they were still moving immediately following a long car ride. I thought that it was just my reaction to the pressure of grad school when I became nauseous after reading microfilm for about 15 to 30 minutes. Given the area of my so-called “expertise” in Southern (the New South) and US Political History, I often put 10+ hours a day into reading microfilm and my breaks took place when I went into a restroom or outside to vomit. It was not stress creating the physical reactions.
Balance is something I used to take for granted. Dizziness and the accompanying discomfort are things that I once felt had to occur with certain activities. Neither should be taken lightly.
Please consider that…
Meniere’s Disease, Vestibular Migraines, other atypical migraines causing Migraine Associated Vertigo, Mal de Debarquement Syndrome, Ototoxicity, Acoustic Neuroma, Labyrinthitis, Vestibular Neuritis, Perilymph Fistula, and so many other conditions are more common than we think. Dizziness can be caused by any number of conditions. Some studies suggest that more than 33 percent of Americans over the age of 40 have experienced at least some type of Vestibular dysfunction.
If that person knows the cause, they are in fact lucky. Not lucky for whatever is causing the negative effects, but lucky in that they have a legitimate diagnosis that so many lack. That’s not a dig or criticism at MDs and the medical community. It’s an acknowledgment of how complex the vestibular system is and that recognizing many of the root causes of various symptoms requires specialized training and knowledge. It’s tough to say, but expect to see more than one MD. Expect to have at least one MD accuse you of faking. Expect at least one MD to offer some “quick fix” that only makes the condition worse.
Your friends and colleagues may have difficulty relating to you. It isn’t easy to comprehend if you have not experienced it. It’s not a broken leg. Often it’s not a condition that people have heard about at some point in their lives.
Invisible Illnesses are real. You might feel alone and helpless, but you aren’t alone. It’s hard to believe that at times, but look around, read, and you will reach that conclusion for yourself. That’s what happened to me, and it seems to be the case with many.
Make a list of your symptoms and detail every activity no matter how mundane or unimportant it might seem. Determine if specific things make your symptoms worse or better. Something minor could be the key to getting an accurate diagnosis.
Seek out support groups. Do not be afraid to pose questions to your healthcare professionals. Seek second, third, fourth, fifth opinions and continue until you receive some answers and find a treatment plan that helps.
Brutal honesty here, but the road can be long and difficult. There are many potholes and obstacles that may appear to be insurmountable. I can still hear Charley after the long hours of tests and examinations at Johns Hopkins. He said that it would get a lot worse before it got any better. He wasn’t lying. At the time I wasn’t sure if I could handle any worse. It did get worse, but I also persevered. When it finally stopped getting worse, it felt like I was just spinning my wheels in the mud without anyway of hooking up a winch.
Majid told me that I would recover, and I believed him then and still do today. The road has not been smooth. The pace has not been consistent. At times I have taken a step back in order to move that step plus an inch forward. When I look back, I see considerable distance that I have travelled along this trail over the course of five years. That trail is cluttered with various obstacles, pits, and other hazards. The path ahead appears to be in better condition. It’s still uphill, but I have made it up steeper grades. There is a bend in the pathway up ahead that I see. I won’t know what is on the other side until I reach it.
Now I want to reach it. I want to see what is beyond. There are no doubts like I harbored before, earlier on this journey. I believe that I can reach this bend and adapt to whatever rests on the other side of the curve. The trail might continue indefinitely. I might encounter a fork with options, or I could be at the conclusion.
To me Balance Awareness Week helps to bring needed attention to a journey most do not choose or wish to embark upon. There are a seemingly infinite number of routes of varying distances with both similar and unique challenges for any and every individual. The goal is to discover which path is yours, and then for each path to conclude at its desired location.
- Let’s raise awareness and decrease the time it takes to receive an accurate diagnosis for vestibular disorders.
- Let’s raise awareness and decrease the time it takes to receive an accurate diagnosis for vestibular disorders. provide better maps and markers to make the trails less intimidating and the potential obstacles easier to spot and avoid.
Strangely enough I now think that my journey is a blessing. I did not always feel that way, but now I appreciate so much that I rarely, if ever, gave a second or possibly even an initial thought. To be able to do something, have that ability stripped, and to regain that ability is a mysterious miracle in its own right.
My best to all as you travel your respective paths along your own journey.
Below are links to 2 organizations with research information which you may find beneficial
For anyone not familiar with hyperacusis, this ABC feature provides an all too true experience.