Living with Dizziness: My Struggle with the Tilt-A-Whirl Called BVH

At one time or another, I believe that each and every one of us has experienced dizziness. We may have felt it as children, after spinning in a circle with our friends. Perhaps we felt it after riding a playground or carnival ride. We may have felt it, as adults, after imbibing too much alcohol. We may have been dizzy with pain after injury or trauma to our body. Dizziness may occur if we are not getting enough oxygen to our brain, due to a variety of reasons.

We might have felt it after hearing some emotional news. Some of us suffer with it every day, through no fault of our own. We feel it because of disease, injury, or other afflictions, that affect the function of our inner ear. I am going to focus on my own personal dealings with the condition, as each who suffers may have different experience.

In April of 2004, after several weeks of feeling dizzy, nausea, migraines, and actually falling, I was diagnosed with Bilateral Vestibular Hypofunction (BVH). As a Registered Nurse, I understood what that meant, but really did not know what my options for treatment and cure were. I decided that I would just take off my "nurse's cap" and have everything explained to me, as if I were someone without a medical background. I also decided to go back to my first human biology classes and begin with what was NORMAL function, and then push on from there

Simple Anatomy and Function of the Ear
In returning to the basics, I recalled my lessons about the ear and it's function. I knew that the ear functioned for hearing AND balance. This essential organ is divided into 3 parts:

1. The Outer Ear is comprised of the pinna or auricle, the ear canal, and the eardrum. This is the portion that is visible, or can be seen with an otoscope at the doctor's office, and is responsible for gathering all of the sound waves and moving them into the Middle Ear.
2. The Middle Ear contains three bones - the hammer, the anvil, and the stirrup - as well as the Eustachian tube. The three bones convert the sound waves that hit the eardrum into vibrations and move those vibrations into the inner ear. The Eustachian tube facilitates the drainage of any fluids, in addition to relieving pressure within the ear.
3. The Inner Ear is made up of two sense organs - one that deals with hearing and one that deals with balance, motion, and gravity. The hearing portion is called the cochlea, and the balance portion consists of the vestibular or semicircular canals. Both organs are connected to either a hearing or a balance sensory nerve, which receives the impulses and sends them to the brain for interpretation.

It is all pretty simple when it works as it is intended to. However, why would anyone have a problem with balance? What can be the cause of dizziness, and what can one do to treat it? It sounds extremely straight forward. I found out, however, in my experience, that sometimes medicine and various disease processes and conditions can be quite a bit more complicated than you would think.

Bilateral Vestibular Hypofunction
I visited my primary physician with the complaints of dizziness, nausea, migraines, fainting and falling in mid-March of 2004. She, in turn, sent me to a specialist - an Ear, Nose, and Throat (ENT) doctor. He determined that I needed further evaluation, and referred me to an Audiology (hearing) and balance specialist. It was in this office that I had the appropriate testing that led to my diagnosis of BVH.

I was happy to go through the testing process because I could not work while suffering with this condition. As an RN, I could not trust my balance to assist patients in changing positions or while walking with them during recovery from procedures. I could not ensure that I could maintain balance during emergency situations, running to rooms to help the staff, or for performing CPR. I certainly could not stand at an operating room table and assist the surgeon with the delicate sewing during heart surgery.

I was not able to drive in for emergency surgery, while on call, in the middle of the night. This condition made it impossible to drive at all, as peripheral movement from passing cars and various objects along the road would send me into a horrible bout with dizziness and motion sickness. It was particularly difficult to do anything at night, driving or walking, as there was no frame of reference to the horizon to help me maintain a sense of balance. My life as an RN Consultant and Educator traveling to teach my peers was put on hold, as my independent functioning became virtually non-existent.

I was also suffering from a type of forgetfulness and confusion that is common with this condition. I was always such an organized and regimented individual who could multi-task as an Olympic sport. With this situation, I could not do that. I understand now, that this is due to the brain's heightened struggle at trying to maintain balance on it's own. In expending all of that effort, there was no energy available for anything else. I looked forward to diagnosis, and hopefully, resolution. I wanted to regain my independence and my identity as a productive member of society. I desperately wanted to function, without help, in my own home, as a wife and as a mother, caring for my own young children.

Testing for BVH
The testing was quite easy, and not too uncomfortable. I had my hearing checked first, and then went into the balance testing. The balance testing is done to determine if the problems are due to the inner ear. The test that I had done was called an ENG or electronystagmography. Nystagmus is involuntary, rapid eye movements, and the ENG measures these involuntary eye movements that result from position change. The reason that this is an important test is due to the fact that the control of one's eye movements is directly affected by impulses from the vestibular bodies in the inner ear.

My ENG test was divided into three parts, with each portion testing a different component of balance and the brain's ability to compensate for dizziness. For all of the tests, I wore a specialized set of goggles that was equipped to measure my eye movements. These goggles could be opened to light or closed off, creating total darkness, depending on the needs of the test.

1. The first portion of the ENG test involved my tracking an object as it moved slowly or quickly across a screen. I also had to concentrate and count numbers and/or letters that would move or appear on the screen in varying speeds. In both cases, I had to keep my head steady and move my eyes only.
2. The second piece required that my chair be moved in various positions, to see how my eyes would react to the change of position and plane of my head. I completed this test with the goggles both opened and closed.
3. The third segment was a called a Caloric Test, and was done with my goggles closed. The specialist measured my eye movements after instilling warm, and then cold water into each ear canal.

Based upon the results of these tests, the diagnosis was made. I understand that my hearing was within normal limits, however, my responses to the ENG were extremely low. This, obviously, was not normal.

Causes of BVH
After being diagnosed, my initial question to my physician were, "What is BVH and how does one get it?" BVH, defined in simple terms, is a condition where both vestibular canals are not working, as they should. The reasons for this dysfunction, however, are varied, and they include:

1. Trauma to the inner ear
2. Infection - including meningitis
3. Gentamycin (antibiotic) toxicity
4. Meniere's Disease
5. Unknown Cause - About one-third of all cases are attributed to unknown etiology. (Retrieved on January 14, 2007 from http://www.dizziness-and-balance.com/disorders/bilat/bilat.html)

My physician explained to me that I fit into the latter case. He could not tell my why I had it, and he could not tell me if I could be rehabilitated. He said, instead, that we would commence with the treatment he was about to prescribe, and hope that the symptoms could be alleviated in time. His lack of certainty did not inspire hope within me.

Treatment, Prognosis, and Evaluation
In most cases, you treat BVH by treating the cause of it. For me, with an unknown reason for acquiring this condition, Gaze Stabilization Therapy (GST) became my prescribed method of treatment. GST involved a series of eye movement exercises, as I laid down, rolled over, sat up, and stood up, in order to induce dizziness. The theory behind this was that by making myself dizzy, I would gradually make my brain compensate for it, bypassing the vestibular bodies within my inner ear completely. Making myself nauseous and dizzy twice a day did not make me happy, but I did it to try to get back to functioning normally.

This condition changes your life, and how you function within it. It can also be permanently disabling. My physician informed me that the percentage of recovery is directly related to the amount of damage incurred. As the numbers on my tests were extremely low, I could only imagine the extent of injury that I had suffered. I was heartened by the information that the condition could not get worse, however, the slow pace of any type of recovery was depressing.

I would experience a lessened sense of dizziness each month, however, the dizziness would return, and I would feel as if I had gone back to square one. I felt as if I was fighting a never-ending battle. I was still having motion sickness and dizziness in the car, and would frequently spend my time as a passenger with my head down and eyes closed until we reached our destination. After two and a half years of trying to rid myself of this disease, I have finally
resolved myself to living with it ... and despite it.

Life finds me today, essentially the same as I was in 2004, with the exception that the dizziness is not as severe as it initially was. I do not fall as often as I did before, but I do sometimes. I still cannot drive. Peripheral motion still sends me into nauseating swirls of vertigo. I still do not work outside of my home. I use a cane - not only because of pain in my back and knee from previously existing conditions, but also for balance. I find it helps to hold on to something. My lifestyle has changed, and despite the challenges of this condition, I remain hopeful that I can get back to a productive way of life in the future. I am still seeking ways to fit this condition into a life that includes work. The prospect looks bleak at times, but I am still hopeful.

I have changed my goals. I am looking to remain a nurse-teacher, however, I probably will not teach in the traditional sense. I will not be in the classroom, standing in front of nursing students, and making a presentation. I will not be able to facilitate training in a hospital setting, assisting my peers with their work and providing knowledge and information in order to make their work lives easier. I will not be able to scrub in with the new operating room staff to orient them to the unit. Instead, I look to the written word. I can still think, and I can still write. I can maintain my equilibrium by keeping still, and pouring out my thoughts and knowledge on a piece of paper. I know that I can find opportunities with that ability. In fact, I embrace that possibility.

BVH is not a fatal disease. It could be easy, though, to give up and withdraw, slowly dying due to the severe limitations this may put on the quality of life expected. I know how easy it could be, as I contemplated and lived the same thing. I chose, however, to pick myself up and find another way. It is my hope, as a nurse and as an educator, that I can inspire those who suffer with this. I hope that we will find the strength and courage to look forward to another day ... to find our voices to rally for improvements in treatment ... to encourage additional research for a possible cure ... to see hope for the future ... and for a better quality of life for us all.