Vol. 10, No. 3, Summer 1993 CHARLIE DASCHBACH: LIFE WITH MENIERE'S IS A BALANCING ACT FOR PHYSICIAN Editor's Note: The following story first appeared in the December issue of Barrow magazine, a publication of Barrow Neurological Institute of St. Joseph's Hospital and Medical Center (SJHMC) in Phoenix, Ariz. The story is reprinted here by permission of Barrow.) In spite of a dizzying schedule, Charlie Daschbach, M.D., has his feet planted firmly on the ground. At the moment, with characteristic splashes of wit and enlightened instruction, he's steering an eager brood of interns through patient rounds. Charlie's self-assured movements are hardly those reminiscent of a person who once found his environment spinning out of control. Six years ago, the symmetry in his life was severely tested by Meniere's disease, a condition that causes repeated attacks of dizziness due to increased pressure of the inner ear fluids. Charlie's first attack occurred in early 1987 during the middle of the night. "The bedroom was spinning and it felt as though someone had hit me over the head with a hammer. I fell out of bed, crawled to the bathroom and started vomiting," explains Charlie. "The next day, I went to see neurologist Joseph White, M.D., who was my boss and mentor at the time. He did a physical examination and suspected my problems were due to Meniere's. He prescribed a diuretic to reduce body fluids and salt, and Antivert to reduce the dizzy sensation. For the next three days, I was extremely dizzy, couldn't move my head and continued to vomit." Two weeks later, a series of hearing tests and an MRI, which was necessary to rule out an acoustic neuroma, confirmed Meniere's in Charlie's right ear. While dizziness is the primary symptom of Meniere's, hearing loss, tinnitus (ringing in the ear), fullness in the involved ear and rotary vertigo (spinning) accompany the condition. After the diagnosis was made, Charlie, who continued with medical therapy, experienced monthly attacks. He would suddenly fall down at work or home and was unable to stand or keep his balance. The episodes would last anywhere from two to six hours. "Meniere's causes a general feeling of disorder. It's a terrible feeling of panic and fear, and it's accompanied by a deep sense inside that everything is wrong," says Charlie. Initially, the effects of the disease were manageable. "In the beginning, the Meniere's didn't interfere with my work because my manager, boss, the residents and interns, and other St. Joseph's physicians arranged their schedules to help me during an attack," says Charlie, who is an internal medicine physician, and as the director of medical education at SJHMC, oversees all intern and resident programs. During this period, Charlie looked to other factors to help decrease the symptoms of the disease. "I started searching for easy answers, such as examining my sleep habits, diet and other lifestyle issues. Unfortunately, the correlation didn't make a difference." Charlie immersed himself in literature about Meniere's, reading copious amounts of research until, as he humorously recalls, "I became dizzy from reading." It was also during this time that Charlie became increasingly aware of others' perceptions of him. "I wish this disease gave you green spots on your face and had significant outward signs. I was really afraid of others' opinions when I'd lose my balance and fall down. I was very concerned that people thought I had a drinking problem," he reflects. "I now have a greater appreciation for others with neurological complications and the challenges they face from public perception." The magnitude of the symptoms and the impact of Meniere's on Charlie's life took its toll during Pope John Paul's visit to SJHMC during September 1987. "Since I was familiar with many of the cardinals involved with the pope's visit, I was asked to be Channel 12's color commentator for the event. I was scheduled to be at the television station at 4 a.m. Around 1 a.m. I woke up very sick and was retching. I made it to the station in time but had to call a friend to drive me there. I made it through the broadcast, but I was mildly dysphoric." It was this episode that caused Charlie to see neurologist Phillip Daspit, M.D., about surgery alternatives. "The decision to perform surgery on those with Meniere's is strictly based on a person's incapacitation and lifestyle," says Daspit. "In Charlie's case, the effects were impairing his personal and professional life." Less than a month after the papal visit, Charlie underwent an endolymphatic sac procedure on his right ear, performed by Daspit. "During this procedure, the surgeon makes an incision in the endolymphatic sac and places a piece of silastic material in the center of the sac to aid in fluid absorption of the inner ear," explains Daspit. The procedure was done on an outpatient basis, and Charlie felt ecstatic with the results. "I was on cloud nine following the surgery. I felt cured. The vertigo disappeared." Of the 100 patients Daspit has performed the surgery on, approximately 70 to 80 percent find the dizziness is alleviated and that the hearing loss is stabilized in the affected ear. "Candidates for this procedure include those with serviceable hearing, such as those who can be helped with a hearing aid, and those people whose hearing fluctuates," he says. "Balance is the primary concern of people with Meniere's, and the hearing loss is secondary. They just want the dizziness to stop." But he is quick to point out that not everyone who experiences dizziness has Meniere's. "In fact, many people come into my office incorrectly diagnosed with Meniere's. There could be several reasons for a person's dizziness; Meniere's only affects a small part of the population." For one year, Charlie remained free of symptoms, but then the attacks resumed, occurring every 10 days or so. "I went back to see Dr. Daspit, who did another series of hearing tests. My hearing was stable in the right ear, which meant the hearing loss diagnosed a year before hadn't changed, and the hearing in my left ear was normal. However, it was obvious the shunt was not alleviating the vertigo, so I agreed to a second surgery." Charlie's recovery from the second surgery, a selective sectioning of the right vestibular nerve, was much more difficult than the first. "I had severe vertigo, was vomiting and couldn't stand or walk without assistance. I didn't quite comprehend the degree of difficulty the surgery would cause me," he says. "I don't remember much about my hospitalization except that the neurosurgery residents and BNI nurses were a godsend to me." "During this procedure, the surgeon performs a craniotomy and cuts the balance nerve, sparing the cochlear nerve. This sectioning stops the vertigo Meniere's patients experience. However, the procedure temporarily causes a person's balance to become worse because it takes awhile for the central nervous system to compensate for the loss of one of the two balance systems. Once the opposite ear stabilizes, the vertigo is eliminated," explains Daspit. A combination of the Meniere's and surgery has caused total hearing loss in Charlie's right ear. Unfortunately, in August 1991, Daspit confirmed bilateral Meniere's because of fluctuation in Charlie's left ear. However, Charlie has not had an attack like those prior to the second surgery. It's a guessing game if and when Charlie will become deaf in the left ear. The prospect of a non-hearing world is evident in lifestyle adjustments he has already made. "I've ordered a special stethoscope that amplifies sound for my left ear, and when I walk with people they must be on my left side. I also sit with my 'good' ear facing a crowd. My wife has begun to learn basic sign language too." The experience with Meniere's has caused Charlie to appreciate his mortality and, except for the disease, his health. It's also changed his manner as a physician. "I'm a much better doctor because of the Meniere's and subsequently because of being a patient. I now realize the value of a 10 to 20 minute patient visit. We physicians tend to be focused on the office visit and not on the impact of disease on the patient's whole life. I now think in terms of a patient's activities of daily living, such as cooking and shopping. I also impart this to the interns, asking them to take the time to determine how disease is affecting their patients' lives in general." Obviously, total hearing loss will be a significant factor in Charlie's ability to communicate with patients and students as a physician and educator, but that has not tempered his hope for others. "My secretary's son is deaf and he wants to be a physician. I realize the obstacles he will face, but I always encourage him because I believe it's possible to be deaf and still be a good physician." _________________________ NEW MATERIALS We've recently added a document, S-4: Dining Out, by Katherine Warren, Ed.S., NCC. It's full of tips for getting out without getting dizzy. Dining Out is free to members. Please send a stamped, self- addressed #10 (long) envelope with your request. _________________________ POEMS AVAILABLE Priscilla Staples, a VEDA member, has written 45 poems that she is making available (at cost) to VEDA members. Ms. Staples has vestibular hypofunction, secondary to gentamicin ototoxicity, and the poems are about experiences common to many VEDA members. To ask for her poems, write to her at 121 West Main St., Fort Kent, Maine 04743. LIBRARY PACKETS Members often write to VEDA to say they've had no luck in their home towns finding information about vestibular disorders. Typically, local libraries have nothing in the card catalog under "dizziness" or "vertigo." To help solve this problem, VEDA is offering library packets to members to place in local libraries. The packets include Balancing Act and several brochures and flyers on vestibular disorders. VEDA can't afford to send these packets free to all the libraries in the U.S. However, individual members who want to help others are invited to buy packets from VEDA for $10 each to donate to libraries. To get a library packet, send a check to VEDA for $10. Include a note requesting a library packet. When you give your packet to your librarian, be sure to tell her or him that it's a donation, worth $10, meant for the vertical file or pamphlet file. Or possibly Balancing Act could be shelved as a book. Ask the librarian to catalog the vertical file material under "dizziness" so other people with symptoms but no diagnosis will be able to find it. Ask your librarian for a receipt if you want one for your tax records. After you've successfully placed the packet in your library, please let VEDA know the library's name and address. We will create and maintain a list of such libraries to try to avoid duplication of effort. NEWS AND REVIEWS By Susan L. Engel-Arieli, M.D. Below are summaries of articles that appeared in recent medical and professional journals: 1. Regeneration of Inner Ear Cells -- Recent research indicates there may be hope for eventually curing leading forms of deafness. Inner ear cells have been restored in mammals using a chemical made from Vitamin A. Before this, deafness resulting from a loss of hair cells was assumed to be permanent. Researchers predict that the information gleaned from experiments in rats could be tried on human beings within a decade. The death or malfunction of auditory hair cells is thought to be the cause in the majority of the 18 million cases of deafness in the U.S. The cells can be damaged by loud noises, chemicals, diseases, or age. If the new research holds up, it may be possible to repair the inner ear in humans and treat deafness and other inner ear problems. See Lefebzre, P., et al., "Retinoic Acid Stimulates Regeneration . . .," Science, Vol. 260, April 30, 1993, pages 692-695. 2. Vertigo in the Beauty Parlor -- The author of a recent article suggests that a head or neck hyperextended during shampooing at a beauty parlor may be an important risk factor for strokes in elderly women. The extent and possibility of this happening depends on the duration and force of movement, circulation, and degree of atherosclerosis and arthritis of the neck. Concern was raised when stroke symptoms occurred in seven elderly women after shampoo treatment. Symptoms included vertigo, slurred speech, dizziness, nausea, vomiting, numbness, and weakness. Some of the women returned to normal; others improved but had deficits, and others remained impaired. The hazard of neck hyperextension and rotation was not previously suspected in the elderly, who are at a higher risk for strokes. The author suggests that elderly people should avoid hyperextending the neck during shampooing and that beauty shops should substitute a safer, flexed posture. See Weintraub, Michael, "Beauty Parlor Stroke Syndrome. . .," JAMA, Vol. 269, No. 16, April 28, 1993, pages 2085-2086. 3. Vertigo Before Strokes -- Doctors recently reported on two patients who developed vertigo for several months before suffering strokes. Both had risk factors for strokes, and both had transient episodes of other neurologic symptoms not associated with the vertigo. Also, both developed recurrent vertigo, which lasted for several minutes up to several times a week. The doctors assume that the episodes of vertigo resulted from transient blood loss to the inner ear or vestibulo-cochlear nerve. See Oas, J., et al., "Vertigo and the AICA Syndrome," Neurology, Vol. 42, 1993, page 2274. 4. Toxins and Dizziness -- Chinese researchers recently studied the incidence of abnormal health symptoms in paint workers exposed to xylenes and toluene. Symptoms included chronic dizziness, fatigue, palpitations, acute headaches, and chest tightness. Workers in the high exposure group were 3.3 times more likely to develop three or more chronic symptoms than the low exposure group. See Wang, J.D., et al., "Acute and Chronic Neurological Symptoms," Environmental Research, 61(1), April 1993, pages 107-16. 5. BPPN After Vestibular Neuronitis -- A recent article discussed nine cases of BPPN that developed after bouts of vestibular neuronitis. The interval between neuronitis and the BPPN onset ranged from two weeks to 20 years. The extent and degree of the lesions varied, which could explain the time difference in the BPPN onset, the authors said. See Harada, K., et al., "A Clinical Observation of BPPN. . .," Acta Oto-Laryngolica, Supplement (Stockholm), 503, 1993, pages 61-63. 6. Tidbits on Vestibular Neuronitis (VN) -- Steroids and VN: Neurotologic test results improved significantly when steroid therapy was used recently in 34 patients with vestibular neuronitis as compared to 77 patients who were not given steroids. See Ohbayashi, S., et al., "Recovery of Vestibular. . .," Acta Oto-Laryngolica, Supplement (Stockholm), 503, 1993, pages 31-34. Follow-up in VN Patients: Complete relief from VN was seen in 57 percent of 60 patients recently studied. One month after onset, 90 percent had abnormal tests, 80 percent after six months, 50 percent after five to 10 years. Because of this 50 percent, the prognosis for VN is not always wonderful despite subjective symptom relief. See Okinaka, Y., et al., "Progress of Caloric Response. . .," Acta Oto-Laryngolica, Supplement (Stockholm), 503, 1993, pages 18-22. Epidemiology of VN: A survey of VN in Japan recently showed no sexual difference in its incidence. The peak of age distribution was between 40 and 50 years; 30 percent of all cases had common colds prior to the disease. See Sekitani, T., et al., "Vestibular Neuronitis. . .," Acta Oto-Laryngolica, Supplement (Stockholm), 503, 1993, pages 9-12. Viruses and VN: Studies have shown that the following viruses can infect and damage the vestibular nerve and labyrinth: rubeola, herpes simplex, reovirus, cytomegalovirus, influenza A, and mumps. See Davis, L.E., "Viruses and VN. . .," Acta Oto-Laryngolica, Supplement (Stockholm), 503, 1993, pages 70-73. Bilateral VN: Bilateral VN with a different onset for each side was reported in a recent study of two patients. In one case, problems appeared in one ear three weeks before involvement of the second ear. In the second case, the time differential was five years. See Ogata, Y., "Bilateral VN," Acta Oto-Laryngolica, Supplement (Stockholm), 503, 1993, pages 57-60. VN in Elderly People: Japanese studies of 74 elderly people with VN showed no sexual difference in incidence, no bilateral VN, 10 recurrent cases, preceding flu or cold in 10 percent, 35 cases with complications of which hypertension was the most common. See Hara, H., et al., "VN in Aged Patients," Acta Oto- Laryngolica, Supplement (Stockholm), 503, 1993, pages 53-56. VN in Children: Seventeen cases of VN in children were analyzed. There were 11 males and six females ranging in age from 3 to 15 years. Bilateral and recurrent cases were not encountered. Fifty three percent of the children had a preceding cold or flu. The prognosis in children was found to be better in children than adults. The central (brain) and peripheral (ear) compensation and recovery was much more effective in children as well. See Tahara, T., et al., "VN in Children," Acta Oto-Laryngolica, Supplement (Stockholm), 503, 1993, pages 49-52. 7. BPPV Treatments -- Sixty patients at Johns Hopkins Hospital received either a single treatment (Semont maneuver) based on the hypothesis that vertigo of BPPV is caused by debris adhering to the cupula of the posterior semicircular canal (cupulolithiasis) or a single treatment (modified Epley maneuver) based on the hypothesis that the debris is floating free in the posterior canal (canalithiasis). Treatment for cupulolithiasis resulted in remission of vertigo in 70 percent of the patients and improvement in another 20 percent. Treatment for canalithiasis resulted in remission of vertigo in 57 percent and improvement in another 33 percent. There was no statistically significant difference between treatments. Further studies are needed to look at the long-term effectiveness of the treatments, the authors said. See Herdman, S.J., Tusa, R., Zee, D., et al., "Single Treatment Approaches. . .," Archives of Otolaryngology -- Head and Neck Surgery, 119 (4), April 1993, pages 450-454. Below are summaries of articles appearing in consumer publications: 1. Healthy Lawn, Sick People? -- Pretty green grass can be a hazard to your health. If you use bugs and weed killers, you may be taking in the poison by inhaling the air, walking barefoot, or by tracking chemicals into the house. Low doses of pesticides can cause dizziness, headaches, and muscle twitching. Larger amounts can lead to damage of the nervous system, kidney, liver, or to cancer. To help prevent illness, follow directions; wash chemicals into the lawn with the sprinkler; don't walk barefoot on the chemicals; try natural pesticides to kill insects, and ask neighbors to tell you before they spray. This information comes from the National Coalition Against the Misuse of Pesticides and the Environmental Protection Agency, Washington, D.C. 2. More Dangerous Chemicals -- According to the Environmental Protection Agency (E.P.A.), the average household contains between three and 10 gallons of hazardous chemicals. The article lists some of the 11 most risky chemicals you can buy. If any of these ingredients are listed on the container, avoid buying it, or use extreme caution. Some of the 11, which the article says can produce dizziness or vertigo, are as follows: a) perchlorethylene, used in dry cleaning, adhesives, aerosols, paints and coatings. Common side effects include dizziness, headaches, nausea, fatigue, loss of balance, and irritation. b) benzene, used in waxes, resins, oils, varnish, lacquer, and gasoline. It is very irritating and can cause brain, nerve, and blood damage. c) naphthalene, used in solvents, fungicides, toilet bowel deodorizers, and moth repellents. It can damage the nervous system, eyes, liver, kidneys, skin, and blood. d) paradichlorobenzene, used in moth repellents, insecticides, germicides, deodorants, and fumigants. It may produce dizziness, weakness, irritation, loss of weight, and liver damage. Please note that the above chemicals may have other side effects and that there are other chemicals that can produce dizziness. See Winter, Ruth, "Too Many Dangerous Chemicals. . .," Health Confidential, Vol. 7, No. 6, June 1993, page 4. 3. Coping with Motion Sickness -- Ship humor for people who suffer from motion sickness includes the joke, "At first you're afraid you're going to die. After a while, you're afraid you won't." Dr. K. Dardick of the Connecticut Travel Medicine Clinic in Storrs, recommends one of the following to get over the worst: a) a transdermal scopolamine patch, an antihistamine called buclizine, or promethazine (an anti- nauseant), all of which are prescription drugs; (b) non-medicinal products including pressure bands worn on the wrists, and ginger root (or ginger cookies if the root is unavailable). Other advice from experts includes the following: focus on the horizon; breathe fresh air; avoid alcohol; turn your thoughts to something else; recline and support your head with a pillow; if traveling by car, stop and get out occasionally to let your body recover. See Hellmich, Nanci., "Halting Motion Sickness," U.S.A. Today, Section 6D, May 6, 1993. 4. Poetry in Motion -- Research indicates there may be a genetic predisposition to motion sickness, according to a recent article. Children between the ages of 2 and 12 are particularly susceptible to motion sickness, but it can strike anyone. Even astronauts are vulnerable to this malady. Prescription drugs may make some people woozy, drowsy, and/or disoriented and should not be used in pregnant or nursing women. Inexpensive, non-drug therapies include the following: (a) ginger. No one is sure why it works, but it is thought that it may interfere with the brain's release of queasiness-causing stress hormones to the stomach. Herbalists recommend an adult dose of 1,000 to 1,500 milligrams of ginger 30 minutes before departure. Children may benefit from ginger candy or Reed's Ginger Brew (a ginger-ale brand with a high concentration of ginger); (b) accupressure wristbands, sold in many pharmacies. According to one gastroenterologist, the bands work best if you periodically press on the button throughout the trip; (c) aromatherapy using inhalers containing essential oils of various plants. Certain scents such as peppermint oil appear to be particularly soothing; (d) plum balls, which are lozenges made of Japanese plums and rice flour. See "Putting the Poetry Back in Motion," Vegetarian Times, May 1993, pages 95-96. Author's Note: Please note that neither Dr. Engel-Arieli or VEDA can recommend or be responsible for an individual's reaction to a particular treatment. These reviews are not intended as a substitute for professional health care by your own physician. Please do not begin any treatment without first checking with your physician. _________________________ SUPPORT GROUP NEWS The Southern New Hampshire group takes pride in its illustrated monthly newsletter, which recently included articles on hearing tests, hearing aids, and regional and local meetings. The leader of the 35-member Vero Beach, Fla., group says, "The most important thing my group has experienced is the knowledge that they are not alone. . . . We need to acquaint all family physicians and ear specialists about vertigo and Meniere's. . . ." Australia has eight states, including the island state of Tasmania, home of Meniere's Australia. Two other states, Victoria and Queensland, also have vestibular support groups. Meniere's Australia is helping to set up a support group in a fourth state, Western Australia. The Fanwood, N.J., support group alternates between guest speakers and rap sessions for its monthly meetings. Recent speakers discussed living wills, chronic illness and the family, allergies, audiology and balance, and medical news. The group also devotes the June meeting to spouses and holds a holiday party in December. This year, members had a table at a local health fair and spoke to church groups about vestibular disorders. "Sometimes we laugh, and sometimes we cry, but we're all there for each other and try to lift each other's spirits when needed," said group leader Kathleen Lang. Members of the Corpus Christi, Tex., support group are working on a brochure to be given to family practice doctors for their waiting rooms. The Philadelphia, Pa., group meets quarterly. Meetings usually include a speaker but allow time for personal sharing of experiences and suggestions. Last summer, the group held a "small but spirited" picnic. Otologists, psychologists, pharmacists, dentists, nutritionists, and physical therapists have spoken to the support group in Royal Oak, Mich. The group leader is seeking a homeopathy specialist for a meeting in the fall. (Space limitations prevent us from using all the support group information received. More will appear in the next issue.) MEMBERSHIP AND INFORMATION FORM ______ Yes, I would like more information about VEDA. ______ Yes, I want to become a member. Name ______________________________ Street ______________________________ City ______________________________ State ______________ ZIP____________ Telephone ( )__________________ I want the kind of one-year membership checked below: _____ individual or family ($15) _____ renewal ($15) _____ professional ($35) _____ professional renewal ($35). _____ hardship ($0) I am donating $ ______________. Please make checks payable to VEDA and mail to the address on the front page. Vestibular Disorders Association P.O. Box 4467 Portland, Oregon 972-8-4467 Address correction requested Nonprofit Org. U.S. Postage PAID Permit No. 5882 Portland, OR