In early January 2007 I packed my suitcase for a grant review meeting held annually at a hotel on Key Biscayne, Florida. I didn’t really spend much time on the beach at those meetings, since nearly all of our time was in a hotel conference room, discussing research proposal. Nonetheless, it was always nice to escape from Minnesota’s minus 20 degree temperatures for a couple of balmy days in Florida. I had written drafts all of my reviews and settled in to get a good night’s sleep before heading to the airport the next morning. Around 4am I awakened. When I sat up in bed the room was violently spinning. I felt a sense of panic, wondering what in the world was happening to me. I tried to stand but immediately fell, fortunately backward into bed. Within minutes vomiting began, which lasted all morning into the afternoon. My wife called the Sonesta hotel and left the message for the Committee Chair that I was ill and couldn’t attend the meeting. So much for warm gulf breezes and seafood salad with iced tea under palm trees.
After recovering from the acute episode, I saw my physician who initially said it was probably caused by a virus that affected my inner ear, but he acknowledged it could also be an uncommon type of vertigo caused by a problem with crystals falling into the canal of my inner ear. That seemed far-fetched at the time. Six months later the second episode occurred, this time I had been seated at my computer working on a chapter I was writing. I suddenly turned my head in response to a noise, and the room began spinning and didn’t stop. By holding onto the wall, I managed to make my way from my study to bed without falling. Vomiting lasted the rest of the day.
I was referred for a test in which a fiber optic camera covered my eyes like goggles and transferred what the camera saw to a computer monitor. The physical therapist asked me to lie down with my head tilting over the edge of the table. She rapidly moved my head first to the right for 30 seconds, then the left and then she asked me to roll over on my left side and finally to sit up straight, all the while wearing the eye movement camera. After three repetitions of this sequence, she showed me the images of my nystagmus, rapid jerky movement of my eyes in the direction opposite the head position. It looked like a series of frantic appearing “beats.” By the third repetition, the nystagmus stopped. That was how I learned I had Benign Paroxysmal Positional Vertigo (BPPV), a real mouth full. The therapist explained that small crystals, called otoconia, are shed by tissue inside the inner ear which float downward by gravity into the inner ear canal where they eventually settle in sufficient numbers to block the flow of fluid needed to detect the direction of head movements, hence the vertigo when you move your head.
That wasn't great news, but it turned out there was something I could do about it. The therapist gave me exercises I could do at home, and I eventually purchased a DVD from Dr. Timothy Hain, an otolaryngologist in Chicago, demonstrating the Epley Maneuver Exercises that would clear the crystals from my inner ear canals. The exercises seemed to have been working well, until in Mid-May of this year. I had gone for a routine eye clinic appointment to fit new eyeglass prescription. As I was pulling into the parking lot the spinning began followed within a minute or two by retching. I managed to call for help using my IPhone and was hospitalized overnight until the spinning and vomiting stopped with the aid of IV medication.
The most recent episode was on July 6th when I was scheduled to teach a class on autism at the University of Minnesota, and I had another episode of violent spinning sensation and vomiting that lasted twelve hours. I have had more frequent episodes, but now they have been preceded by a feeling of fullness in my right ear, tinnitus, first high pitched ringing and then an almost roaring sound in my right ear. Voices are muffled and unintelligible when I cover my left, “good” ear so am only using my right ear to hear. After the last episode’s immediate crisis had passed, I saw an ear nose and throat specialist and his colleague, a physican’s assistant who specializes in such conditions. An audiologist test for loss of hearing at various frequencies was conducted. The audiogram indicated and I had lost much of my hearing at low frequencies in my right ear. I could tell from the expression of her face that the news was not good. She said, “With your history of recurring vertigo and vomiting episodes, feeling of fullness in the ear, roaring tinnitus, and now loss of low frequency audition, that is the profile of Meniere’s Disease." She didn’t break all of the bad news to me at once. As a professional working with families of kids with autism I do the same, so I knew the drill. I suppose she was sparing me the information that I would very likely eventually lose my hearing entirely in the affected ear. She prescribed an anti-inflamatory medication that she said might help over short term with relief from symptoms. I keep a packet of chewable meclizine in my pocket at all times and on my bedside table at night in case the spinning sensation begins. If I sit or lie extremely still after taking meclizine the most violent episodes are usually prevented.
Meniere’s disease is a progressive, chronic relapsing neurological condition that destroys the labyrinth of the ear’s cochlea and inner ear that enables one to hear and maintain balance. In many cases between 5 and 8 years after onset, the condition “burns out,” with cessation of spinning and vomiting episodes but entire hearing loss in the affected ear. The cause of Meniere’s disease is unknown and there are no treatments demonstrated to be effective. Theories abound but data are scant. Vestibular Rehabilitation Therapy may enable me to maintain better balance and to use visual and other kinestheic cues that are still working in the other ear to compensate for lack of balance sensation from the affected ear.
Now I know a little of what parents feel like when they are told their child has regressive autism, for which there is no known specific cause or treatment to halt the progressive loss of skills and worsening of autism symptoms. My paroxysms of vertigo and vomiting are awful and temporarily debilitating, but nothing compared with the daily crises experienced by children with autism and their families. Long-term intensive early behavioral intervention overcomes most of the symptoms over 2-4 years for half of the children, and the remainder experience improvements but not as dramatic. If I’m lucky, Vestibular Rehabilitation Therapy will enable me to function more like kids who receive Autism Early Intensive Behavior Intervention with “best outcome,” copacetic if not entirely wonderful. With my political proclivities, it’s fortunate that my left ear is my “good” ear and eventually won’t be able to hear at all with my right ear (take that, Glenn Beck).
I will likely be a more empathetic listener the next time I have to discuss regressive autism with parents whose child has that condition.