VESTIBULAR DISORDERS ASSOCIATION NEWSLETTER WINTER, 1994 ELECTRONIC MAIL By Laura O'Grady When I first became sidelined with vestibular neuronitis in December 1986, I had no idea what I would have to endure. After struggling to finish school, I was only able to work until the fall of 1989, when I had to go on permanent disability. I was 25 years old and felt like my life was over. With plenty of time on my hands, I started to play with my home computer, something I had only used for work previously. Not one to play computer games, I quickly tired of word processing and spreadsheets. Then I started to use an accessory that comes with many home computers, the modem. A modem is a device that allows you to "talk" with other computers by using ordinary telephone lines. Soon I joined a bulletin board (a service for exchanging information via modem), and I was sending correspondence or "electronic mail" to people all around the world. This was an ideal hobby for someone like myself who was bored with watching television but was not quite healthy enough for socializing. I was amazed at the amount of information that was available and easily accessible from the comfort of my own home. I have found forums on sports, cooking, astrology, medicine, and even UFOs, and it is possible to download (transfer their information) to a home computer. On one of the bulletin boards I joined, America Online, a forum called DisABILITIES allows users to get information, post messages, or chat with other members. If you have access to a computer with a modem, I suggest trying out this method of interaction. I have met many friends and found bulletin boards to be a great source of entertainment. My e-mail addresses are as follows: America Online: GradyO Internet: Grady@Blade.com If you are already an active BBS user, then please send me your email address so we can have an "electronic link." Editor's note: Laura O'Grady is a VEDA member from Toronto. VEDA members are also welcome to send email to VEDA at this address: junder@teleport.com LETTERS TO THE EDITOR DEAR EDITOR: Having read with interest in the Summer 1993 On the Level the article relating to Charlie Daschbach M.D. and his work, I felt a very short personal history might equally interest our fellows. Here's an edited autobiography from December 1992, when I terminated my academic career by leaving work via the stairwell instead of the staircase: Spent time in a coma; spent two years in rehabilitation centres; spent three years teaching myself to walk, thus getting a bit more mind to think with. Spent two more years doing a rehabilitation counselling course; spent a year and a half looking for employment. Finally, spent the last three years working with people who, like me, suffer ataxia, vertigo, nystagmus, fits, memory loss, tinnitus, and who have emotional and social problems, feel weight on their head, lack sensory-motor coordination, are immobilized, and so on. End very edited autobiography. Over the past three years, I have been described as "someone who understands" and "altruistic." People who regained their balance petitioned the hospital where I work to pay me. Their voice was not heard. However, a journalist interested in medicine became aware of my work and published an article in the Sydney Sun Herald titled "The Unpaid Healer." I now receive an income of $150 (U.S. $100) a week from the hospital, and my work is recognized by top neurosurgeons. The real return is to see people with a balance problem learn to teach themselves to regain their senses of independence and self-reliance by, like me, becoming reliant upon their sense of proprioception for balance. Yet, just as the hospital cannot afford me, I can never repay my wife and daughter. Without them I would not be alive, or if I was, I would lie in a nursing home or perhaps be an employee of a sheltered workshop. Mick O'Brien QE2 Institute R.P.A.H. 59 Missenden Road Camperdown, NSW 2050 Australia DEAR EDITOR: Sometime back you requested letters from folks who would share their experiences, and especially success in coping, with vestibular disorders. My bout with Meniere's disease began about two years ago when I had a sudden attack of extreme vertigo. After the attack subsided, I went to a local ENT clinic where I was told I might have Meniere's disease and essentially "to go home and take two aspirin." Well I did nothing to change my very stressful lifestyle (because I felt fine) or my diet and, in the summer of 1992, I was hit by the disease with a vengeance: repeated extreme vertigo, ear noise, fullness, general disorientation. This time I went to a series of doctors (one of whom put me in touch with your organization) and finally was told the full medical story of what I had contracted and what might be done to get my life back together. Since then I have taken a daily dose of triamterene (more recently betahistine hydrochloride, which seems to work better) and, perhaps more important, completely changed my lifestyle and diet. I go to bed early, wake up "naturally," have removed caffeine and severely restricted sodium intake. Also, I get much more exercise. All of this appears to have slowly gotten the disease under control. Today I lead what most would consider a normal life filled with work and family. I guess my real concern is for those people who, when they are first struck with this disease, are simply told to "go home and take two aspirin." I often wonder if I had been informed sooner about this disease, if I would have therefore changed my diet and lifestyle, whether I would not have had to suffer quite so much and to have lost most of my hearing in one ear. This is why I think your work in patient education is so important. Dr. Charles A. Bobertz 2004 Red Fox Road St. Cloud, MN 56301 On the Level welcomes letters but reserves the right to make editorial changes in the interest of clarity. Writers must identify themselves with a name and address and must sign their letters; anonymous letters will not be published. Letters longer than 300 words may have to be shortened. VEDA TIDBITS LOOKING FOR A NEW OFFICE VEDA is looking for a bigger office. We've stacked things to the ceiling where we are, and there's no room for anything more. Also, we don't have enough telephone lines to plug in our TTY, which is still sitting in a box in the corner. We've already doubled-up on the existing lines. We now have 200 square feet on the second floor plus storage in the basement of the building we've been in since 1989. We need 500 square feet (office and storage on the same floor), windows, heat, plenty of grounded wall sockets, three to four telephone lines using five different telephone numbers (regular, toll-free, fax, modem, and TTY), access to a bathroom, and at least one parking space. The office should be within three miles of the main post office in downtown Portland, Oregon. We pay about $1 a square foot in monthly rent. If you know of someone who would donate the use of suitable space to VEDA or would rent it at a price we can afford, please let us know. OTHER SERVICES? Write and let us know what other services VEDA could offer members. What else can we do that would be helpful? NEWS & REVIEWS By Susan L. Engel-Arieli, M.D. Below are summaries of articles that appeared in recent medical and professional journals. The first four deal with tinnitus. THE USE OF NORTRIPTYLINE FOR SEVERE CHRONIC TINNITUS Swedish and British population studies have found that 15 percent of adults experience constant or nearly constant tinnitus. The prevalence of tinnitus, but not the severity, increases with age and with the degree of high- frequency sensorineural hearing loss. There is no cure available for the vast majority of people with this disorder. Therefore, physicians from the University of Washington Medical School and the University of Texas studied 92 people with severe chronic tinnitus, half of which were given a placebo and the other half nortriptyline, an antidepressant. Sixty seven percent of the patients taking nortriptyline said that the medication helped, while only 39 percent receiving the placebo said the medication helped. The investigators believe that nortriptyline treatment produces greater improvement than the placebo in reducing functional disability, depression, and tinnitus loudness in patients with chronic severe tinnitus. However, on occasion, the positive effect was nullified by troublesome side effects. Nevertheless, they believe that when the drug is tolerated, the disability can be reduced, although the illness still remains. See Sullivan, M., Katon, W., et al., "A Randomized Trial of Nortriptyline for Severe Chronic Tinnitus," Arch. Int. Med., Vol. 153, Oct. 11, 1993, pages 2251-2259. ANOTHER POSSIBLE TREATMENT FOR TINNITUS Doctors in Portland, Ore., tested the effectiveness of another drug, alprazolam, an antidepressant, for patients with tinnitus. Twenty were put on this drug, while another 20 were given a placebo. Seventy six percent of the patients receiving alprazolam had a reduction in the loudness of their tinnitus. Only one patient receiving a placebo reported any improvement. Individuals differed in the dosages required to achieve benefit from the alprazolam, and the side effects were minimal. See Johnson, R.M., et al., "Use of Alprazolam for Relief of Tinnitus: A Double Blind Study," Arch. Otolaryngol Head Neck Surg., Vol. 119, 1993, pages 842-845. SILENCE THE RINGING? With no effective treatment, tinnitus victims have had no choice but to endure the anguish, although many have done so creatively. The great Spanish painter, Francisco de Goya, who complained of incessant roaring in his head and who went deaf, channeled his torture into the form of painted characters holding their ears. The Czech composer Bedrich Smetana had tinnitus as did the physician Joseph Toynebee, the father of otology, the branch of medicine dealing with the ear and its diseases. A recent article further said that alprazolam had been shown to dampen tinnitus. (See item above.) Experts are wondering if the drug really turns down the tinnitus or merely helps people to cope better by getting them to relax. Since alprazolam can be habit-forming and has side effects, alternatives are worth considering. Relaxation and biofeedback can also help alleviate tinnitus in some people. See "At Last, A Silence Pill," Hippocrates, Nov.-Dec. 1993, pages 70-71. MORE ON TINNITUS The latest U.S. Public Health Service survey indicates that 36 million adults have some form of tinnitus. For 7.2 million, tinnitus is severe and disabling and ranks third, behind severe pain and balance disorders, as the most distressing conditions people can have. Tinnitus may be a sign of nervous system disease, early inner ear disease, gradual hearing loss, other systemic disease, or dysfunction accompanying movements of the head and neck. The parameters used to identify tinnitus are intensity, location, duration, quality, maskability, and so on. The tinnitus intensity index uses a scale ranging from 0 to 7. Grade 0 reflects a total absence of tinnitus; grade 7 represents the most severe intensity. Variables that may accompany tinnitus include accumulations of ear wax, ear infections, endolymphatic hydrops, acoustic tumors, damage to the ear by toxic drugs, exposure to loud noise, temporomandibular joint disease, and allergies. Drugs that relieve or suppress tinnitus are lidocaine, some anticonvulsants, vitamin A, vitamin B, zinc, antihistamines, and muscle relaxants. Some of the drugs that can aggravate or are connected with tinnitus include aspirin, some antibiotics, quinine, some water pills, nonsteroidal anti- inflammatory drugs, caffeine, alcohol, oral contraceptives, and so on. See Shulman, A., "Subjective Idiopathic Tinnitus," Cortlandt Forum, Nov. 1993, pages 160-169. TINNITUS, VERTIGO, AND TEMPOROMANDIBULAR JOINT DISEASE (TMJD) A total of 138 patients receiving treatment for Meniere's disease, hearing loss, tinnitus, and/or vertigo underwent a dental and jaw exam, a recent article said. Eighty percent had some type of TMJD or occlusion. Thirty three percent had disorders that required treatment. In a group of 16 patients who received dental treatment, 57 percent had improved ear- related symptoms. The conclusion was that, for a subgroup of patients, ear symptoms as described above may be improved by dental treatment. See Kempf, H.G., et al., "Correlation Between Inner Ear Disorders and TMJD," HNO, Vol. 41, No. 1, Jan. 1993, pages 7-10. In another study, 20 patients whose chief complaint was tinnitus were examined. They had no known jaw pain or dysfunction. After careful examination, 19 of these people had evidence of TMJD. The conclusion was that people who have tinnitus with no apparent vestibular cause should have a careful examination of the TMJ. See Morgan, D.H., "Tinnitus of the TMJ Origin," Cranio, Vol. 10, No. 2, April 1992, pages 124-129. HEAD TRAUMA AND VERTIGO People can develop a "postconcussion syndrome" after a closed head injury. The predominant symptom is headache. Other possible symptoms include vertigo, lightheadedness, giddiness, impaired concentration, insomnia, fatigue, and memory problems. The duration, but not the incidence or intensity, of the symptoms appears to be correlated with the severity of the brain injury. It is unknown why the postconcussion syndrome develops in some patients and not others. Organic brain damage has been found in even minor head trauma. Additionally, brain circulation has been found to be slowed in these people. Headache treatment has had the most success compared to treatment of the other symptoms. See Joy, E., et al., "Closed Head Trauma in Active People," Your Patient and Fitness, Vol. 7, No. 5, Sept./Oct. 1993, pages 17-22. OTOSCLEROSIS Localized bone resorption is responsible for changes within the middle and inner ear that result in hearing loss and vertigo in otosclerosis. In initial experimental studies, indomethacin, a nonsteroidal anti-inflammatory drug, was found to decrease the amount of otosclerosis. See Adachi, K., et al., "Indomethacin Inhibition. . . ," Arch. Otolaryngol. Head Neck Surg., Vol. 117, No. 3, March 1991, pages 267-269. DIGGING INTO DIZZINESS Proper evaluation of dizziness by doctors can be difficult and requires a careful history, according to doctors at George Washington University Medical Center. Dr. Schessel, of the center, says the history is one of the key ways to diagnose the problem. Doctors should ask about the following, he says: what dizziness means to the patient, what other symptoms it's associated with, its duration, what increases or decreases the symptoms, etc. He says that a complete medical history, family history, list of medicines, physical exam results, and relevant test results should also be examined. See Brown, S., "Dig Into the History. . . ," Int. Med. News & Cardiology News, Oct. 15, 1993, page 10. Below are summaries of articles appearing in recent consumer publications: NAIL POLISH AND VERTIGO Some cosmetic companies, with a nudge from consumer activists, are reconcocting their nail polishes to remove toluene. Toluene has been linked to nausea and dizziness in pregnant women and to birth defects. Revlon and Maybelline have already removed the toluene, and others are likely to follow. See "Nail Polish Gets a Shade Safer," Health, Nov./Dec. 1993, page 12. DO YOU FEEL DIZZY? A recent article discusses the hows and whys of dizziness. Dr. Robert Baloh of U.C.L.A. is quoted on benign positional vertigo (BPV, also called BPPV, in which the extra P stands for paroxysmal). This can be triggered by a change in head position and is caused by tiny calcium deposits in the inner ear that have become dislodged. Dr. Baloh is quoted as saying that a maneuver (which sounds like the Semont technique) that he uses for BPV, cures 90 percent of his BPV patients the first time, while the rest may take one or two more tries. The article also explores Meniere's dizziness, whether surgery is a good option, and briefly discusses the Vestibular Disorders Association. See Conway, C., "Do You Feel Dizzy?" American Health, December 1993, pages 64-67. RINGING IN YOUR EARS? The most common cause of tinnitus is exposure to loud noises. Dr. J. Spencer Jr., associate professor at the West Virginia University Medical School, reportedly found that 60 percent of patients with tinnitus had elevated blood cholesterol and triglyceride levels. When these levels became normal, tinnitus was said to frequently diminish or disappear. Other alternative therapies that have been tried, with mixed results, include the herb Ginkgo bilboa, niacin, biofeedback, masking with "white noise," and reducing stress. See Heimlich, J., "Ringing in Your Ears? Tune It Out," Health and Healing, Vol. 3, No. 11, Nov. 1993, pages 6-7. Author's Note: Please note that neither Dr. Engel-Arieli or VEDA can recommend any particular treatment 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. NEWS BRIEFS TINNITUS AWARD The American Tinnitus Association's board of directors voted unanimously to confer the ATA memorial tinnitus award recently on Pawel J. Jastreboff, Ph.D., and Margaret M. Jastreboff, Ph.D. This husband-wife team and their colleagues are studying various aspects of tinnitus including causal mechanisms and models, a news release said. Pawel also works with patients at the University of Maryland Tinnitus Center. Tinnitus, a chronic ringing or other distressing noise in the ears or head, seriously affects an estimated 12 million people in the U.S. alone. HANK YOU We thank all of the following for their contributions to VEDA through Jan. 5. Patrons ($1,000-$4,999): The Black Watch Color Guard, Peru, IL; Howard Underwood, FL. Associates ($100 to $499): Mary Colony, MI; Bob Barancik, PA; Deanne Bonnar, MA; Linda Allen, VA; Terence Gooding, CA; Mr. & Mrs. W.C. Cooke Jr., VA; Dr. David Beal, AK; Naomi Lederer, NY; Anne & John Kendrick, MA; Norman Griner, N.Y.; Esther Tolkoff, NY; Dr. Thomas Teal, MI; Stephen K. Fisher, MI; Steven Smith, MI; Kevin Robinson, OR; Stella C. Averill, CA; Becky Konen, TX; Dr. Susan Engel, Park Ridge, IL; Michael H. Sydney, Hooksett, NH; James & Deanne Bonnar, MA. Contributors ($10 to $99): ALABAMA: Lewis Ellenburg, Judy Nation, Nell Horsley, Paul Bozeman, Harry Gifford, Karen Swartz, Martha Artis. ALASKA: Patience Campbell, Don Abel Jr., Barbara Kolberg, Nancy Stivers, Lillian Dorcas, Patricia Varness. ARIZONA: Norma Raya, Fred & Doris Guilford, Pauline & Guy Young, Patricia Abraham, Don Seely, Betty Patton, Norma Raya, Judy Garrett, Carolyn Ragsdale, Pat Smyth, Dr. A.L. Mansure, Dorotha Wolfe, Marjorie Rolfe, Stan Tausen, Fred Guilford, Leslie & Diane Coffee, Norma Reya, Hope & Sage Dillon. ARKANSAS: W.J. Martin. CALIFORNIA: Opal Tucker, Dorothy Blair, Debby Zurzolo, Elaine Welch, Karolyn Zebarth, Georgia McKenry, Joan Kraus, Allison Stockley, Misa Stroker, Trudi Wellman, Barbara & Edwin Crawford, Jim & Sandra Bassler, Sylvia Englestein, Karolyn Zebarth, Lisa Hunt, Patricia Duffy- Pelletier, Michael Ross, Floyd Paul, Geraldine White, Mary Kottman, Debby Zurzolo, Martin Bloom, Myron Roth, Maria Persico, R. Ted Meyer, Heitsu Tu, Josephine Hamlin, John Montoya, John Pino, Mardell Smith, Nessie Studley, Sue Krebs, June Moore, Jerome Spector, Carol Springer, Winifred McLaughlin, Meg Flaherty, Janet Mooers, John Carlson, Thomas Chester, Carol Labadie, Christine Sullivan, Martha Barros, Lillian Kuhn, Richard Goldstein, Jim & Sue Williams, Sybil Cramer, Rachel Brokaw, Elena McClain, Richard Chole MD, Misa Stroker, Thomas Scott, Ann Ulrich, Karolyn Zebarth, Jeanne Rosendahl, B. Christa Vragel, Lee Law, Lawrence Paget, Winifred Crews, Julie Yamamoto, Ingrid Ebstein, David Folsom, Dr. Robert Logan, Patricia Sclabes, Agnes Oman, Vee Robinson, The J.M. Petersons, Laurie Hafer, Isolde Andrade, Arvind Sakliker, Bernice Johnson, Harry Lew. COLORADO: Charles Maxfield, Mr. & Mrs. Robert Weber, Janice Gilland, Mary Lou & George Lehnhoff, Patty Haybach, Mr. & Mrs. H.D. Rauchenstein, Katy Leahy, Mary Williamson, Marilyn Girouard, James Gliozzi, Mr. & Mrs. Thomas Rogers, Olive Liguore, Lois Burke, Jim & Carolyn Berghoefer, Bill & Jeanie Swartz, Lois Jensen, Kim Saltus, J. Cook, Mr. & Mrs. Dana Switzer. CONNECTICUT: Pamela Post, Cathy Catey, Marie Miller, Roberta Diday, Dorothy Coughlin, Marian Gregory, Harry Whipple, Christopher Murphy. DELAWARE: W.R. Richmond, Bernadine Lunski. DISTRICT OF COLUMBIA: Allen Johnson, Mortimer Friedman, Herbert Franklin, Pamela Moffat. FLORIDA: Gloria Massry, Robert Percy M.D., Edwin Martin, Lucylle Hyser, Ann Monaco, Henry Poulin, Susan Kellett, Richard Kaplan, Jack Rasmussen, Brenda Danback, Henry Chaffee, Hannah Polansky, Catherine Beale, Howard Berger, Hannah Polansky, Anita Feagles, Mary Horan, Jeff & Susan Kaye, Henry Chaffee, Lucille Anderson, Sybel Meyer, J. Edward Kendrick DDS, Melda Lynn. GEORGIA: Gera Idine Rider, James McCloskey, Elizabeth Spiegel, Gaye Cronin, Katherine Gaines, Linda Hambrick, Gloria Shupert, Connie Monroe, Neal Grantham. IDAHO: Mrs. Vernon Peterson. ILLINOIS: Christine Ohgren, Luvie Owens, Pauline Clancy, Ann King, Ruth Fullerton, Richard Wasser, Joseph Pompei, C.F. Moculeski, Richard Wasser, Darleen Runge, Leatrice Wesber, Arlene Stielow, S.L. Nielsen, Kathryn Nudo, Teresa Campana, Rita Eckhart, Frances Kiercynski, Nancy Behnke, Mildred Walter, Bill Johnson, Richard Rygielski. INDIANA: G.K. Bhagavan. IOWA: Lloyd Shelangoski, Ruth Conway. KANSAS: John Peterson, Dr. & Mrs. James Shields, Jennifer Galliardt, James Hoy, Gordon Haynes, David Hart, Diane Lee. LOUISIANA: Gail Hebert, Annemarie Maher, Phyllis Chatman, Sidney Sandoz Jr. MAINE: Carrie Berry, Bethel Arbuckle, Mary Dyer. MARYLAND: Chata R.K. Smith, Clara Kahler, Laura Russ, Carol Silkwood, Elizabeth Garmatz, Lavern Riggs, Susan Joy, Stanley Oliver, Cora Fisher, Mary Personette. MASSACHUSETTS: Norman Kartiganer, Edward Flaherty, Jacob Lichman, Paul Pitman, Sue Fisher Seeger, Marilyn Steele, Marion Coughlin, Frances Clohecy, Guy Forcellati, Beulah Morrison, Irma Aponte, Elizabeth Quirk, Irma Jacobson, John Baldessari, Wendy Shaffer, Pasquale Paradiso, Frances Dennis, Angela Crofford-Bik, R. Shirley Burton, Steven D. Rauch MD, Susan Bayard, Marion Coughlin, Paula Kordana, Michael Impastato, Alicia Warner, Rick Rowan, Jean Miller, Mary Pratt, Angie Walsh, Constance Thayer, Frederica Cushman. MICHIGAN: Doreen Wise-Friedenberg, Joni Rainbolt, Kenneth Aldrich, Brady Walker, Angie Grigorian, Janet Rea, Marie Key, Ed Karmann, Katherine Kerr, Dennis Bojrab, Verna Chambers, Paul Olson, Barbara Binkley, Carolyn Bush, Myrtle Foor, Carol Wagenmaker, Earl Zetterholm, June Evans, Karen Frohlich, Marion White. MINNESOTA: Angela Kaiser, Dr. Charles Bobertz. MISSOURI: Edward Mullen, Kathleen Black, James Strotko. MONTANA: Carl Swanson. NEVADA: Pauline Berliner, Margaret Gilbert. NEW HAMPSHIRE: Rev. Francis Demers, Mary Brick, Norma Moore. NEW JERSEY: Jennifer Schutte, Kevin Voight, Michael Wyatt, Rosa Gavasci, Eileen Cooper, Cathy Mele, Denise Carelli, Chul Y. Chi, Mary Louise Smith, Kenneth Marks, Jeffrey Levin, Bill Robinson, Theresa McAvoy, Harry Bott, Alexander Hochheiser, Mary Wagenhoffer, Robert Bergeman, Henry Mikulewicz. NEW MEXICO: Donna Buys, Milward Pinckney, Bette Richards. NEW YORK: John Howard, Roscha Folger, Nancy Mesh, Daniel Cohen M.D., Michael Kaplan, Mary Whitworth, Janis Rosenbaum, Beverly Milazzo, Randy Atlas, Noella Schum, Dorisann Rinaldo, Mary Ann Casola, Carmela Cottone, Bernice Heller, Sheila Bernard, Bob Marsin, Rita Demers, Mary Braverman, Ellen Glassman, Jessie Cicchelli, Michael Thomas, Barton Sholod, Shirley Demers, Carole Mitchel, Helene Schmidt, Peggy Mosheim, Alice Garment, Lydia Chang, Ben Orland, Olga Bursch, Jesse Simons, David Bernstein, Susan Daddis, Susan Landes, Judith Siegel, George Holzmann, Roscha Folger, Sam Brody, Virginia Halstead, Robert Benson, Naomi Utevsky, Anne Siegel, Mary Allegra, Saverio DeFrancisci, Mary Corrado, Georgia Sitaras, John DiBiase, Diane Morgan, Ruth Stone, Elizabeth Karpoff, Jean Anne Vincent. NORTH CAROLINA: Linda Marker, Marilyn Beaver, Robert Kirkpatrick, Kathy Nelson, Bonnie Fowler. NORTH DAKOTA: Patricia Christiansen. OHIO: Melanie Beckemeyer, Ethel Busch, Virginia Cope, Dale Mugler, Miriam Faud RN. OREGON: Joyce Glines, Pauline Wiley, Grieke Moran, Helen Sinclair, Shirley DeJong, Marlene Troutt, Bernd Crasemann, Marion Byron, Ida Barbeau, Tracy Hensley, Bertha Nelson, Pat Waalkes, Marian Yost, Elmer & Darlene Griser, R. Ken Ellison, Nancy Gibbons, Paul Boehler, Tricia Hillbury White, Joseph Bulone, Martha Torson, Wilfred & Verna Willer, Robert Stokes, Bettyrose Noble, Charlotte Shupert, Karolyn Eiseman, Martha Hogensen, Shirley DeJong. PENNSYLVANIA: R.R. Pottash M.D., Nancy Yorski, Lorraine Wescott, Susan Cox, Susan Casciato, Sybil Stein, Muriel Jackson, James Martino DDS; Robert Kerrigan; Bette Gilkey, Donna Goldfarb, Joseph Clark, Mario Dentino, Shirley Levin, Jeff Segal, Judd Gordon, Julie Nieminski, Ron Delese, Susan Taylor. RHODE ISLAND: Froma Harrop, Margaret LeBlanc, Deborah Smith. SOUTH CAROLINA: Kay Hanson. SOUTH DAKOTA: Dolores Shanks. TENNESSEE: Anita Nix, Mary Ann Neumann, Denis Parker, Janet Clark, Betty Ann Keil. TEXAS: Linda Nguyen, Lydia Cruzen, Sandra Jones, Gale Robertson, Mr. & Mrs. R.L. Thomasson, Catherine Anderson, Betty Wharton, George Parker, Dick Reagan, Roy & Lydia Cruzen, Crystal Lanham, Ken Savage. VIRGINIA: Robert Hay, Patricia Barron Benson, Richard Bloomfield, Helen Fry, Jeanne Webb, Debbie Mayer, Louis Mauro, Nina Segal, Sharon Brendel, Dwight Waldo. WASHINGTON: Frances Niemi, Karen Wescom, Dianna Gentry, Marvin Carmichael, Robert Beckman, Alice Floyd, Linda Peterson, Sue Parks, Anne Kunkle, Anne Grimm, The Williams Family, Nyla Jensen, Ielene Edmonson, Evelyn Adlard, R.L. Downs, Cynthia Singh, Anita Hamlett, Dorothy Sturdevant, Alan Sprague, Teresa Nelson, Lois Haddon, Ethel Hilling, Alice Anderson, Norita Nelson. WEST VIRGINIA: Sarah Horton, Alan Desmond. WISCONSIN: Linda Keller, Aletta Vandervelde, Sandra Carlson, Eugene Schmidt, Joan Orthober, Marie Kaiser, Ray Rosenmerkel, Jill Zamsky, Doris Wyatt, Shirley Ruediger. WYOMING: Edna Johnson, Jane Camenzind. AUSTRALIA: Kathryn Stoddart, Michael O'Brien. FPO: Ronald Haydon. BERMUDA: Patricia Smith. CANADA: Gail Spray, Susan McNally R.N., Tanis Doe, Barb & Don Hennel, S. Ormerod, Arlene Steel, Rosanne Shipman, Donna Davis, Shirley Read. ISRAEL: Tsvi Groner. SINGAPORE: Kay Ehrhart. Molly-Jane Isaacson Rubinger, leader of a support group in Boston, Mass., scheduled meetings on the following subjects in 1993-94: variable symptoms, dealing with anger and jealousy, intimacy and sexuality, building self-esteem, emotional issues related to disability claims, fear, depression and anxiety. Sherrie Holtz, leader of the Greater Washington DC group, says the members do a lot of phone networking rather than driving to meetings. "We are a grass roots group of people," she says," from all walks of life, all nationalities, and all religious preferences. The only objective is for us to get together, enjoy each other's company, and share with others who in one way or another are in the same boat." The Bellvue, Wash., group formed in early 1993. It has focussed on learning about current medical advances and alternative medicine treatments. Recent speakers have included a chiropractor and a physical therapist. A future meeting will concern biofeedback. Several of the group's members are interested in Tai Chi, and the group also plans to discuss betahistine, an inner-ear drug not available in the U.S. The Meniere's group of Sacramento, Cal., published its first newsletter in October. The illustrated newsletter includes short articles, a meeting map, a Kartoon Korner, and notes from group officers. Also, Judy Pino Ph.D., a leader of the Sacramento group and a member of the VEDA board of directors, announced that she had completed a survey of recent medical literature related to Meniere's disease. "The 29 articles reviewed were mainly concerned with surgical intervention," she said, "without a single paper on the possible cause(s) of this illness, or less drastic treatments for it. To my knowledge, there is no large collection of information about Meniere's patients, so what are we waiting for, let's compile one ourselves!" The newsletter included an enclosure, the Meniere's Patient Survey. "We are interested in gathering this information," she said, "to summarize our various characteristics, from general medical history to current symptoms. We will also categorize the success of treatment options, surgeries, etc." Ms. Pino said if results of the survey were sufficient, "we will submit a paper to an otology journal." (Editor's note: Please send news of your group to VEDA for inclusion in future issues of On the Level. VEDA members interested in starting a support group may write to VEDA for a free start-up kit. The groups are independent of VEDA, not chapters. Individual members are encouraged to join VEDA as individuals, but the groups pay no group dues or fees to VEDA. All you need to start a group is the desire to help people with dizziness and balance disorders, a list of interested people, and a place to meet.) PHONE RELAYS AVAILABLE Under provisions of the American with Disabilities Act of 1990, telephone companies must now provide telecommunications relay services across the U.S. A telecommunications relay service (TRS) allows people who are deaf, hard of hearing, or speech impaired and who have a text telephone (TTY) to communicate through a communications assistant (CA) with people who use a standard telephone. A CA relays TTY input to the standard telephone user and types that person's response back to the TTY user. According to a brochure from the Clearinghouse of the National Institute on Deafness and Other Communication Disorders (NIDCD), telecommunications relay services can be reached via an 800 or other toll-free number. CAs are trained to be as unobtrusive as possible during a call. A CA's responsibility is to relay the conversation exactly as it is received. All relay calls are confidential. Regardless of which long-distance company or organization is providing a state's relay service, callers can continue to use the long-distance company of their choice, the brochure said. This service will allow people with communication disorders to communicate with all telephone users. The NIDCD Clearinghouse brochure, "Facts About Telecommunication Relay Services," lists the TRS 800 numbers for every state. Copies of this brochure are available from the NIDCD Clearinghouse, P.O. Box 37777, Washington, D.C. 20013-7777; phone 800-241-1044 (voice) or 800-241-1055 (TTY). NEWS BRIEFS WHIPLASH HANDBOOK A book recently published by the Charles C. Thomas company of Springfield, Ill., may have information of interest to VEDA members injured in rear-end auto collisions. Monique Harriton, author of The Whiplash Handbook wrote to VEDA after watching the VEDA videotape Staying Even, which mentions automobile accidents as a possible cause of dizziness and loss of balance. Chapters in the book focus on the physics of rear-end collisions, anatomy, treatments, prevention, insurance, resources, etc.