Dr. Ann Kerlin surveyed patients who suffer from vestibular dysfunction as a result of gentamicin poisoning. In this article she summarizes her findings.
Daily Struggles for Vestibular Patients
by Ann M. Kerlin, Ph.D., L.P.C.
A survey posted online this year contained a list of functional impairments and environmental barriers developed by an online support group known as “The Wobblers.” Participants were asked to evaluate how often these symptoms were troubling based on a four point scale with choices of “no, sometimes, most of the time, or all of the time.” The results are displayed in Table 1 below. In addition to these day-to-day problems with doing normal tasks, most patients reported oscillopsia, which means their vision may ‘bounce.’ They reported tinnitus (ringing in the ears), and a great deal of anxiety and feelings of depression as they navigate an unsteady world.
The people who answered this survey suffer with damage caused by gentamicin and other medications from the family of aminoglycosides. Because of their reaction to the medication, they lost their sense of balance, sometimes are dizzy, and sometimes have vertigo. If you have a loved one who struggles with a vestibular disorder, perhaps this chart will be helpful. Many symptoms are similar to other vestibular disorders, although people damaged by aminoglycosides never get their sense of balance back. They can have better days and worse days, and sometimes are extremely fatigued. Some vestibular exercises are helpful, but those respondents who use them state you must practice them consistently to gain the most benefit.
Families of people with a vestibular disorder might want to make sure there is adequate lighting in the home and outside at entrances, and be sure to keep flashlights or those handy clip-on LED lights on hand. These can be great assets for going outdoors in the evening, since almost all participants reported problems with balance in the dark. Having flashlights available also provides a sense of security for patients, in case of emergencies or the occasional power outage. Make sure there are adequate handrails on stairways and a grab bar or chair in the shower. If we understand that it’s physically difficult for our family member to reach overhead, pick things up, or carry items, it may make us more willing to help! Fatigue can be a real issue for vestibular patients, since they spend a lot of energy trying to keep their balance; something we take for granted. They complained of muscle strains and cramping; sometimes due to the way they walk and their continual focus on where they are stepping to avoid potential hazards. When the vestibular system is impaired just turning your head can cause problems with vision.
People who have vestibular disorders often have some accompanying hearing loss, which makes communication more challenging. If you look at the chart you can see that patients are also reporting many problems with memory, thinking, and following conversations. Unfortunately, some reported losing their ability to feel independent, and a loss of freedom to drive, shop, or visit friends by themselves. A fear of falling goes along with vestibular disorders, leading many patients to withdraw from many social outings. Family members can be sensitive and encourage their loved ones once we understand the limitations they struggle with on a daily basis. For people without a vestibular disorder, this invisible illness can be difficult to understand.
Table 1: List of Functional Impairments (n=108)
|No||Sometimes||Most of the time||All of the time|
|Difficulty maintaining balance in the dark||4||5||18||81|
|Difficulty navigating stairs without handrails||5||12||18||73|
|Balance problems are worse when you are fatigued||5||13||21||69|
|Must rely on handrails or chair when showering||19||12||25||52|
|Difficulty with balance when going from sitting to standing||10||31||28||39|
|Difficulty reaching overhead and looking up without falling||9||16||26||57|
|Experience vision problems when turning or moving head||5||20||29||54|
|Difficulty bending over and picking things up||13||27||21||47|
|Fluorescent lighting affects balance||32||32||23||31|
|Going into strange environments is frightening due to fear of falling||10||21||27||50|
|Difficulty carrying things without assistance||16||36||30||26|
|Difficulty walking and talking at the same time||15||36||29||28|
|Changes in barometric pressure make balance worse||33||30||16||29|
|Problems regulating body temperature||42||26||25||15|
|Difficulty standing still in one place without something to hold onto||15||20||25||48|
|Different shoes affect balance||19||20||18||51|
|Shadows affect balance||14||22||27||45|
|Problems with depth perception||11||32||32||33|
|Must use a cane or walker||31||27||21||29|
|Must use a wheelchair||79||23||2||4|
|Feel dizzy at times||18||32||34||24|
|Problems with long-term memory||35||45||22||6|
|Problems with short-term memory||18||33||31||26|
|Problems with concentration||19||32||31||26|
|Have problems trying to multitask||15||30||35||28|
|Difficulty keeping up with conversations||23||43||33||9|
|Problems watching TV or movies and following the storyline||37||38||20||13|
|Difficulty remembering verbal instructions, especially if more than one are given||30||34||24||20|
|Loss of independence||22||27||28||31|
Source: Patients were asked to select how much difficulty the above impairments or environmental factors affected them negatively, based on a four point Likert scale, using a non-standardized questionnaire (n=108).
If you or a loved one have been damaged by aminoglycosides, which include drugs such as gentamicin, streptomycin, amikacin, and tobramycin, and would like to take the survey, click here.
Ann Kerlin is an Assistant Professor in Counseling at Luther Rice Seminary & University. Her husband suffers from a vestibular disorder as a result of being exposed to gentamicin.