SURVEY CONDUCTED IN 1996GOALS and INTENTIONS:Not enough is being done in the medical community with regard to this problem. So, "we the patients" have been proactive and gathered our own data, hoping that those in the medical community will view it, and participate in our search and research.You're welcome to copy/distribute this data. In fact, you're encouraged to submit it to your own healthcare provider.
NOTE: this is not a controlled study
and was not conducted by medical personnel! View all data at your own discretion. Do not use
this information as a substitute for medical care with your
healthcare provider. Think you're "the only one with these symptoms?" Read On! |
SURVEY DATE: 1996
TOTAL # OF RESPONDENTS TALLIED: 402
1. Sex:
37% Male 63% Female2. Age:
2% 20 or under 11% 20-29 31% 30-39 32% 40-49 18% 50-59 4% 60-69 <1% 70+3. Location of Respondents:
Alabama (2); Alaska (5); Arkansas (2); Arizona (7) ; Canada (30); California (66); Colorado (9); Connecticut (2); Delaware (2); Florida (13); Georgia (7); Hawaii (1); Idaho (2); Illinois (11); Indiana (5); Iowa (1); Kansas (4); Kentucky (3); Louisiana (2); Maine (1); Maryland (7); Massachusetts (9); Michigan (11); Minnesota (11); Missouri (7); Montanta (2); Nebraska (1); Nevada (1); New Jersey (14); New Mexico (1); New York (21); North Carolina (4); North Dakota (1); Ohio (11); Oklahoma (4); Oregon (11); Pennsylvania (16); South Carolina (4); South Dakota (1); Tennessee (4); Texas (25); Utah (3); Vermont (3); Virginia (16); Washington (12); Wisconsin (3); Wyoming (1) United Kingdom (6); New Zealand (2); Chile (1); Australia (5); Philippines (1); Spain (1); Israel (1); Norway (1); South Korea (1)4. Perhaps you always got car-sick as a kid, but aside from that, how long would you say you have consciously been aware that you are suffering from a dizziness problem?
21% Less than 6 months 13% 6 months to 1 year 17% 1-2 years 19% 3-5 years 14% 6-10 years 10% 11-20 years 6% 20+ years5. To your knowledge, has anyone else in your family ever suffered with vestibular disorders?
25% Yes 75% No(On average, those that answered “YES” to this question said that 1-2 other family members had suffered with vestibular disorders)
6. Have you been able to trace your dizziness back to any particular event, such as a head trauma, car accident, scuba diving, etc.?
24% Yes 76% NoOf those that said YES, events that were "thought" to have triggered initial dizziness included:
ear and sinus infections; viral infection; a cruise (quite a few respondents have listed this is a cause); snorkling/diving; back injury; severe colds and flu; head trauma; surgery of the nose and sinus after auto accident; barotrauma caused by flying with head cold; carbon monoxide poisoning; "possibly from general anesthesia"; rubella; punctured tympanic membrane; drugs; MS exacerbation; shingles in ear--have been dizzy ever since; auto accident; fell on cement and hit head; Gentamicin given for a lung infection; position change during sexual intercourse; antibiotics; cortizone injection in neck; ear surgery; pop in neck while turning head, followed by sharp pain and dizziness; airplane trip (several people mentioned this!); bypass surgery; meningitis; childhood abuse; removal of tumor; toxic level of gentamycin; childbirth--loud pop in ear Note: 1 respondent said he believes that there are 2 possibilities: hearing reduction after taking high school rifelry, or repeated fast decompressions while in Airforce Note: 1 respondent said that her dizziness problems started after she stopped taking birth control pills7. People with vestibular problems often visit many physicians due to the fact that it can be very difficult to get a diagnosis, and equally difficult to find treatment that works. Therefore, respondents were asked the following question: “Over the months or years since you've been dizzy, how many physicians (including only the following categories: Internists, ENTs, Otologists, Otolaryngologists, Neurologists, Neurotologists and Neuro-Surgeons) have you visited to try to either get a diagnosis or resolve your symptoms?” They answered as follows:
58% 1-3 physicians 26% 4-6 physicians 6% 7-10 physicians 3% 11-15 physicians 3% I have been seen by more than 15 physicians 3% Did not respondIn addition, how many medical practitioners of the following categories have you visited trying to get a diagnosis or resolve your symptoms? (Include: chiropractors, acupuncturists, TMJ specialists, psychologists and other mental health professiona l, physical therapists, nutritionists, biofeedback specialists, and so on)
52% None 36% 1-3 8% 3-6 3% 6-10 <1% 10-15 <1% 15+8. If you have gone outside your home town to try to find help for your dizziness, please list the other states or countries to which you have traveled:
# of people who travelled and where they travelled to: Arizona(1); California(4); Florida (1); Georgia (1); Illinois(2); Indiana(1); Iowa(2); Kentucky(2); Maryland(5); Massachusetts(2); Michigan (1); Minnesota (the Mayo Clinic)(3); Mississippi(1); Missouri(2); New Hampshire(1); New York(2); Nevada (1); North Carolina(1); Ohio(3); Oregon(7); Pennsylvania(4); Tennessee(2); Texas(3); Utah(1); Vermont(1); Virginia(1); Washington (1); Washington, D.C.(1); Wisconsin(3); Egypt (1); Germany (1);9. Vestibular patients spend a lot of money on testing, to determine what is causing their dizziness symptoms. The survey results show that patients often have tests repeated over and over again in their search for answers. Respondents were asked: “Which of the following tests have you had done (for your dizziness/vertigo problem only--not for any other unrelated condition)?” Here’s how they answered:
*These numbers do not add up to 100% because respondents could make more than one selection.*
39% ENG, Caloric Testing # of times: On average, 2-3 times (several respondents have had the test repeated as many as 10 times) 20% Platform Test # of times: On average, 2 times 16% Rotational Chair # of times: On average, 1 time (1 respondent has had this test 20 times!) 43% MRI # of times: On average, 2 times (several respondents have had this test repeated as many as 5 times) 25% CAT Scan # of times: On average, 1 time (1 respondent claims to have had this test repeated 8 times) 19% Brain Stem Evoked Response (BSER) # of times: On average, 1 time (some respondents have had this test repeated as many as 3 times)10. How would you best describe your dizziness or vertigo?
24% Occasional episodes of SPINNING VERTIGO but pretty normal in between 19% Occasional episodes of DIZZINESS (no spinning), but pretty normal in between. 2% Very frequent SPINNING VERTIGO. 27% Constant dizziness/off-balance, bouncing vision, etc., but only OCCASIONAL SPINNING 11% Constant dizziness and off-balance, PLUS frequent spinning vertigo 16% I would describe my dizziness differently than above <1% Did not respond11. Which of the following symptoms do you experience with your dizziness?
*These numbers do not add up to 100% because respondents could make more than one selection.*
27% Hearing loss 35% Hearing distortion or hearing sensitivity 49% Pressure or fullness in ears 49% Tinnitus (ringing/noises in ears) 26% Ear pain 34% Bouncing vision (things seem to jump) 56% "Jolts" of dizziness where you feel the need to reach out and hold on 39% Feels like the floor is moving up and down under you 54% Nausea 65% Difficulty concentrating/Feelings of fogginessVestibular problems can cause a wide range of symptoms and patients may describe them in different ways. Many respondents added the following items to the list of symptoms they experience:
anxiety, buzzing sensation in head and neck, clumsiness, confusion, constant hung-over feeling, difficulty looking down, difficulty reading, difficulty swallowing, dizziness when in rooms where lots of people are talking, dream-related dizziness, eye pain, fatigue, feeling like being on a roller-coaster, feelings of being off-balance, feelings of falling, flushing/sweating, head pressure, headaches, hyperacusis, light sensitivity, memory problems, nerve tingling or numbness in and around ear and face, nystagmus, pressure at base of head, problems with peripheral vision, rushing sound in ear with heartbeat, sensitivity to bright lights and flourescent lighting, slowed reflexes, spatial disorientation, strange sensations like the floor appearing to move, thumping of eardrum in horizontal position, unable to lay on one side without spinning, uncoordination, unfocused vision, visual disorientation, and vomiting. ***One of the more interesting symptoms (and one that has been mentioned by quite a few respondents) is a tender scalp, or bruised scalp feeling when vertigo attacks come on. Many respondents have also mentioned short-term memory problems associated with episodes of dizziness.
12. If you could pick one symptom which causes you the most frustration, anxiety, or depression, what would it be?
Respondents answers varied to this question. For many, the worst symptom listed is the constant feeling of movement accompanied by a spacey, hung-over feeling that is NOT as a result of medications. Many respondents referred to this as "brain fog." For others, it is the unexpected “jolts” of dizziness or vertigo attacks that are the most distressing, as well as the helplessness and embarrassment of having “spinning attacks” in public places. Difficulty concentrating and confusion were mentioned repeatedly by respondents as being among the worst symptoms. Hyperacusis, exhaustion, nausea, pressure/fullness, and disrupted vision when turning head were mentioned several times as well. Constantly fighting the dizziness was something that was mentioned by many, many respondents.
13. If you are subject to vertigo (spinning) attacks, when do they most frequently occur?
43% During waking hours 7% In the middle of the night 31% I haven't noticed any such pattern 19% Did not respond to this question14. Do you know whether your vestibular problem is one-sided, or bilateral? If so, how do you know?
The answers to this question were quite varied and did not seem to produce any valuable information as of yet. Statistics will be forthcoming as more data is obtained.15. Women were asked if vestibular symptoms worsen (or, for menopausal women, used to worsen) during menstruation or during ovulation.
Overwhelming, women answered that “YES,” symptoms do increase with menstruation and ovulation.
Regarding pregnancy, answers have varied. Here is some of the anecdotal info. collected:
BETTER WHILE PREGNANT: One woman said "I never felt better than when I was pregnant." One woman said that she was, for the most part, better while she was pregnant. One woman said “during both of my pregnancies, all symptoms went away. They came back once I was done nursing.” One woman said her dizziness symptoms went away altogether during pregnancy. One woman said “I had no symptoms of my Meniere’s during both of my 2 pregnancies.” One woman said she was much better in the early stages of pregnancy, then experienced vertigo toward the latter months. WORSE WHILE PREGNANT: One woman said: "I've had 2 pregnancies and the dizziness was more severe during both." One woman said she was worse early on in the pregnancy, but that symptoms disappeared 6 months into the pregnancy. One woman said that her vertigo began for the 1st time during her 7th month of pregnancy. One woman said “my most severe attack happened when I was 5 months pregnant.” One woman claimed to have a feeling of plugged ears during the full term of 2 pregnancies where “my voice felt like it was inside my cranium.” UNCHANGED DURING PREGNANCY: One woman said her symptoms were unchanged during 3 pregnancies. OTHER COMMENTS: One woman's OB suggested that symptoms might be from hormone induced swelling in the eustachian tube. Many of the women respondents had already had children prior to the onset of their vestibular problems, so were not able to say whether pregnancy made symptoms better or worse.16. Vestibular patients have reported that certain outside factors influence their symptoms. Respondents were asked to select the items that they feel have some influence on whether they’re going to have a "bad" day or a "good" day. *These numbers do not add up to 100% because respondents could make more than one selection.*REGARDING THE BIRTH CONTROL PILL: Most female respondents said that the pill caused no change in symptoms. A couple of people said that they felt much better while taking the pill. And one respondent said: “My symptoms began around the time I switched to a low hormone level BC pill” Another respondent said that her dizziness began at about the same time she started taking the pill. She has stopped and is waiting to see what happens. Also, two respondents have reported symptoms worsening when taking medications for menopause.
32% Weather Changes 31% Barometric Pressure Changes 13% Windy Days 1% Full Moon 23% Other Illness 47% Lack of Sleep 52% Stress 25% Too Much Time in Front of the Computer 8% Excessive Jaw Movement (ie: chewing gum) 10% Lifting Heavy Items 38% Noisy Environments 20% Dark Rooms (ie: Movie Theater)17. What is your "official" or most recent diagnosis? *These numbers do not add up to 100% because respondents could make more than one selection.*
29% NONE 27% Meniere's 9% BPPV or BPPN 4% Perilymph Fistula(s) 6% Endolymphatic Hydrops 4% Vestibular Neuronitis <1% Vascular Compression <1% Mal de Debarquement <1% Acoustic Neuroma 8% Viral labyrinthitis <1% Otosclerosis 3% Vestibular migraine 14% Other
Those respondents who chose “OTHER” as their answer, listed the following diagnoses as having been made by their physicians:
vestibulopathy, blockage of blood supply to hearing & balance centers, trauma induced laybrinthitis, cervical spondylosis, classic vertigo, hyperacusis, muscle spasm of inner-ear, fibromyalgia, infection, possible degenerative otolith, spinal disc protrusion, seasonal rhinitis, heat exhaustion, Barre-Lieou syndrome, labyrinth concussion, post-op labyrinthitis, vascular deficiency, post-concusive syndrome, dysfunctional eustachian tube, MS18. Throughout the period of time since you've had a vestibular disorder, it's likely that not all physicians have been in agreement with what is causing your problem. That being the case, how many varying diagnoses would you estimate you have you received?
21% No response 29% 1 diagnosis 22% 2 diagnoses 16% 3 diagnoses 5% 4 diagnoses 6% 5+ diagnoses19. If you've taken any of the following medications (and ONLY those that you've taken to cope with symptoms of your dizziness!) please indicate whether the drug specifically made your dizziness/vertigo better, worse, or no ch ange.
# of Persons Better Worse No Change 268 Antivert or Meclizine 102 41 125 37 Ativan 14 5 18 6 Baclofen/Lioresal 2 2 2 63 Benadryl 22 7 34 80 Dramamine 17 15 48 70 Dyazide 27 2 41 30 Klonopin (Clonazepam) 13 3 14 15 Paxil 3 4 8 34 Phenergan 15 6 13 37 Prozac 6 11 20 10 Tegretol 2 2 6 101 Valium (Diazepam) 62 8 31 41 Xanax 15 6 20 24 Zoloft 6 5 13Other medications, vitamins, etc. respondents have tried in an effort to help symptoms:
Advil, Amitryptiline, Atarax, Beconase, Biaxin, Blue/green algae, Claritin, Depakote, Diamox, Dilantin, Effexor, Elavil, Entex, Flonase, Florinal, Florinef, Gentamicin, Ginko Biloba, Ginger, Gravol, Hydrochlorothyazide, Hismanal, Histamine, Inderal, Lasix, Lorazapam, Ludiomil, Oxazepam, Magnesium, Marijuana, Maxzide, Niacin, Nifuroxazida, Nortryptaline, Pamelor, Prednisone, Papaverine, Promethazine, Robinul, Seldane, SERC, Streptomyicin, Sudafed, Thyroid Medications, Transdermal Scopalomine, Tranxene, Vancanase, Verapamil, Wellbutrin, Zinc
Which of these medications, vitamins, etc. has been the most helpful, if any?
Advil (1 person said it seemed to help); Amitriptyline (1 person); Blue/green algae (1 person said it seemed to help); Bonine (2 people); Compazine (1 person); Diamox (3 people); Effexor (1 person said it seemed to help, but that benefits decreased after several months); Entex (2 people); Garlic (1 person said that raw garlic helps ringing in the ears if taken early morning on empty stomach); Gentamicin (several respondents say this has helped them); Ginko Biloba (1 person said it seemed to help); Ginger and ginger tea (2 people said it seemed to help); Gravol (2 people said it has helped); Klonopin (1 person said that Klonopin “really stopped the serious vertigo attacks, but did nothing for the foggy feeling”; another person also said it helps); Lasix (1 person); Lorazapam (respondent said "it puts me to sleep and the dizziness is usually gone when I wake up); Marijuana (1 person); Niacin (1 person); Nortryptaline (1 person said it “took the edge off the dizziness”); Oxazepam (1 person said it seemed to help); Papaverine (1 person); Prednisone (1 person responded as having some improvement, but bad side effects); Prozac (1 person said it seemed to help for a while); Sea Bands (wearing them has helped 1 person); Seldane (2 people); SERC (9 people!); Sudafed (1 person); Transdermal Scopolomine (1 person); Tranxene (1 person); Verapamil (2 people said it helped); Wellbutrin (1 person said it seemed to help, but gained 30 lbs.); Xanax (1 person said it takes the edge off symptoms; another said that it was "the best")
20-24. Have you had surgery to try to relieve the dizziness?
8% Yes 79% No 13% UnresponsiveRespondents were asked to describe the surgeries they had, and the results of each one. If you're interested in seeing this information, you can click HERE.
25. Has a doctor confirmed that your symptoms are being caused by something other than the inner-ear? (ie: vertigo from cervical problems, TMJ, multiple sclerosis, allergy, diabetes, or other)
7% Yes 83% No 10% Did no respond to this questionIf you believe that Allergies are contributing to or causing your dizziness, can you specify the foods or substances that seem to cause the most dizziness/vertigo?
Many people mentioned that salt, caffeine, chocolate, and sugar increase symptoms. Other common allergy complains amongst respondents included molds, dust, pollens, paint, and cigarette smoke. Several people also mentioned dairy products as possibly being problematic. And one person noted that scents and aerosals bring on attacks. One person claimed that general anesthesia caused "spinning vertigo and explosive vomiting." In summary, a great number of respondents claim to have allergies that may or may not be associated with their vestibular problems.26. Which of the following treatments have you tried with regard to your dizziness? *These numbers do not add up to 100% because respondents could make more than one selection.*
15% Acupuncture 4% Biofeedback 19% Chiropractic 14% Counseling 4% Cranio Sacral Therapy <1% DMZ Treatments 3% Epley Maneuver 2% Gentamicin Therapy 13% Herbal Medicine 1% Hypnosis 32% Low Sodium Diet 2% Myofascial Release 6% Nutritional Therapy 3% T'ai Chi 15% Vestibular Rehabilitation Therapy 12% Vitamin TherapyOTHER:
Hypoglycemic diet Magnet therapy (still in process of experimenting)Did any of the above treatments or therapies help? Please explain which symptoms were helped and by which treatment:
Overall, the Low Sodium Diet is the therapy that seemed to help the most number of people, although many people claim it made no difference in their symptoms. The next most helpful was Vestibular Rehabilitation Therapy.To read some of the comments from respondents about vestibular rehabilitation therapy, exercise, chiropractic, vitamin therapy, and more, look HERE.
27. Of the respondents who claimed to benefit from Vestibular Rehabilitation, the exercises that seemed to help the most were:
Standing on a cushion with eyes closed, lots of walking while moving the head up and down, lots of head and eye movement, swinging on a swing set, dancing, quick head rotations, using a computerized platform to practice balancing. Repetition of movements that cause the dizziness seems to be the key to success with vestibular rehab therapy.28. Question 28 dealt with hearing problems and tinnitus.
Nothing of significant value has been gained from this question so far. Each respondent has a varying level of hearing loss and tinnitus, and some respondents have no hearing loss at all. The only thing that has helped respondents with hearing loss and tinnitus are low sodium diet, exercise, and white noise machines to block the sounds in the ear. More statistics in this area will be forthcoming as more surveys come in.
29. Respondents were asked what's been the most helpful to them in recovering from or dealing with their vestibular disorder. Responses to this question can be found HERE.
30. Respondents were asked what, if anything, has made recovery or coping more difficult. Their responses can be found HERE.
31. Are you now, or have you ever been, on disability due to your dizziness?
9% Currently on disability 5% Used to be on disability 73% Have never been on disability 12% Did not respond to this questionIf your answer was that you used to be on disability, but are not anymore, please explain how you improved to a point that you no longer needed the disability:
Responses: --Taking the medication Baclofen --Couldn’t afford not to work --Recovered from a bad episode and was able to return to work --Was on state disability for a year and that was the maximum allowed --Ran out of benefits --Diet, walking, stress reduction One respondent said: "I have NOT improved...I am just dealing with the problem and it makes my life miserable almost every day."32. Which of the following activities cause you problems because of your dizziness?
*These numbers do not add up to 100% because respondents could make more than one selection.*
23% Flying 25% Going on a boat 14% Swimming 21% Dancing 24% Running 32% Being in the car as a passenger 36% Driving 35% Shopping 42% Working 9% SchoolIf you selected OTHER, please specify briefly:
watching fast moving objects any repetitive motion in field of vision walking using public transit television sitting still anything that uses my eyes any activity for more than 1 hour aerobics taking care of kids height sleeping on a flat pillow cooking, housework, sex eating, sleeping, living standing up and sitting down are difficult at times bending over bridges, elevators, and escalators lots of people and noise flourescent lighting patterned floors drying hair any rapid head movement reading33. If you continue to do these and other activities despite the dizziness, please share 2-3 of your favorite coping tips. The Coping Tips can be found HERE.
34. Have you ever attended a dizziness support group meeting?
4% Yes 92% No 4% No response to this questionIf yes, was it helpful? Why or why not?
“It's helpful because I am the support group leader and it’s been satisfying to me to bring many folks together who share similar problems. Many people in the group thought they were alone before joining.” “No. No one with similar problems as mine. I needed coping skills, especially re: finances...they all had spouses who supported them.” “Helpful at first, but became too depressing listening to everyone talk about the room spinning, vomiting, etc.” “No, the group leader dominated the discussion and the members were too passive.” “Nice to see others who have the same symptoms and it’s not all in my head.” “Found it frightening...all the other participants were very negative and full of despair.” "The online support group (Meniere's mailing list) has offered more support and information than I could ever hope to find." "It was helpful to talk to people who could relate to exactly how I was feeling." "I received many helpful hints." "It was not at all helpful as all members had Meniere's and I have BPPV." "I attended for too long, I felt alone and had no diagnosis." "I benefited from information meetings. Complaint sessions I can do without." "It made me feel like i was not alone."35. Have you sought out treatment for anxiety, depression, suicidal tendencies, and so on which developed as a result of dealing with your dizziness/vertigo?
23% Yes 56% No 21% Did not respond36. What is the status of your job/career since your vestibular disorder began?
While a large # of people answered "no change in status" to this question, approximately 10% of respondents indicated that their jobs are in jeopardy, or that they have already lost their employment because of their inner-ear problems. Here is a sampling of comments from that group of people:
COMMENTS: I left an extremely good job losing at least 40K a year unable to work hanging on "by a thread" started own business okay so far, but I worry about it was self-employed before and remain so trying to keep my job, not able to concentrate everything is on hold I have to take more time off than before I was forced to resign before being fired for taking too much time off full-time parent (and that makes me dizzy!) problems with dependability in workforce...recover on days off loss of income due to lessened time wasn’t working prior to dizziness still employed but looking at alternatives unable to go on business travel hard to focus on details, causing more stress took new, less stressful job gave up a great top level job on leave of absence since this began have lost drive to continue in own business it has devastated my business; unable to get out and sell use vacation time for attacks...don't push as hard as I used to switched positions to lower stress was told I came close to losing my position as an RN have curtailed going to meetings lost my job because of Meniere's discontinued original career; pursued a career in hearing loss management I must have freedom to come and go, just in case I get dizzy I was about to become a manager until dizziness stopped me37. This question deals with how pro-active you are as a patient. Please select those items that apply.
38% I've done research on dizziness at my local library 19% I've done research on dizziness at a medical library 79% Actively seek out dizziness information on the Internet 32% Have a drawer or box at home filled with dizziness literature 24% Sometimes carry dizziness articles with me to the doctor 23% Have a copy of my medical records at home <1% I've done public speaking appearances on the topic of dizziness 12% Have helped counsel others who suffer with dizziness38. If you were to give your #1 complaint about the physicians you've encountered with regard to your dizziness, what would it be?
Sampling of Responses: "They tell me if it's going to get better, it should be better by now, then they charge me $100 and tell me to come back in a month!" They give up too easily “They try to lump you into a category that is a close fit...if not, they will hammer you into that category like a square peg into a round hole.” If I don’t fit the textbook, they aren’t interested They just keep handing out drugs, without caring if they work or not Inadequate equipment for testing Lack of information given to me Lack of understanding of gravity of disease...how it affects daily life Try to get rid of me because they don’t know what else to do Not following up to see how I’m doing and what needs to be done next Don’t know what to do, so therefore they do nothing Lack of interest...misinformation Lack of compassion Not enough serious discussion or explanation Don’t see it as a disruptive force in my life Brushing it off as a “catch-all” problem such as depression or anxiety They look at you like "don't be such a big baby...so, you spin a little, could be worse." "They think that their diagnosis of Meniere's is the end of their involvement." They don't make themselves available to us. They don't seem to consider it a serious condition. "They want my symptoms to follow a pattern they can label, and I can not accommodate that need!" "They tell me I am dizzy from depression when I know it is the other way around." "My doctor is too proud to learn from a patient who has done research." "...most doctors tend to dislike dealing with chronically ill patients. Their cases get to be so complex and time consuming, a lot of doctors feel they take up too much of their time." "There is no follow-up!" "They're too quick to use their 'pet' diagnosis." "I once described my problem to a physician who claimed I was making up the dizziness." "The 'wait and see' attitude" "They don't treat this as a life-disabling problem" "Every doctor decided I had something different." "They give you the name of something, then say see you in four months." NOTE:It seems to be overwhelmingly common for women respondents to be told by their physicians that the dizziness is either a) all in their heads or b) a "female thing" related to menopause, menstrual cycles, etc. According to the surveys, a great many more women respondents have been "patted on the head" and told to go home and live with it than the male respondents.39. Has your CURRENT doctor made a comment similar to the following?: "Well, there's really not much more we can do for you. You're just going to have to live with it."
47% Yes 42% No 10% Did Not RespondThose who said they will continue to see this doctor, explained:
"Because he's going to get educated by me." "Because 4 doctors have said the same thing." “Just to renew my prescriptions.” “He’s the ENT specialist at our HMO” "I have already changed doctors once. I am made to feel like I'm a bother. Once that happens, I give up..." “I think I can trust him to monitor changes...” “Sheer inertia...I’m tired of seeing doctors, so will return for annual checkups” “I’m in an HMO...it sucks” “Only ENT available” “I’m educating him now and he’s being responsive” “He was thorough in his exam and explained things to me. "I’m seen in a clinic setting and have little choice in doctors." “I can’t afford to go anywhere else.” “It seems hopeless...there’s no where else to go”According to our survey results, of those patients whose doctor told them "you’re just going to have to live with it:”
38 Respondents Stopped Seeking Treatment 144 Respondents Continue to Seek a Cure 11 Respondent did not answer this question40. Has your current doctor ever called you at home just to check up on you and see how you're doing?
24% That'll be the day! 20% Actually, yes, he/she has done so 50% No, he/she has not 2% Did not respond to this question41. Do you feel that your doctor actively seeks out new ways of helping you with your dizziness when current methods are not working?
27% Yes 60% No 13% Did not respond to this question42. Have you been told by a doctor that your dizziness symptoms are "all in your head" or something to that effect, and then later had another doctor tell you that you definitely have some type of vestibular disorder?
24% Yes 63% No 13% Did not respond to this question43. Have any of your physicians ever given you information about dizziness support groups, VEDA (the Vestibular Disorders Association in Portland), or the "Dizzinews" or "Meniere's" mailing lists on the Internet?
9% Yes 83% No 8% Did not respond to this question44. Briefly, what would you recommend that the medical community do to improve its response to people who suffer with vertigo, dizziness, etc.?
Sampling of Responses: **"Take us more seriously!"** (This comment was the most frequent one from respondents) "Be more sympathetic and caring" “I was told once by a doctor that if doctors listen carefully to their patients describe their symptoms, the patients will end up diagnosing themselves.” Better education with regard to vestibular problems Take more of an interest in following through...don’t write off patients when they don’t respond to textbook solutions ENTs need to share their knowledge with personal care physicians Communicate with our other doctors Make a strong effort to find organic reason before looking at psychological reasons “Accept that fact that patients DO know their bodies. Think of us as people, not just as the symptoms we’re talking about during this 15-minute office visit.” Don’t be threatened by proactive patients Take extra time to communicate with patients Familiarize patients with VEDA and local support groups Don’t assume that because an ENG is normal, the patient is okay Give written explanations to patients Publish results of surveys like this one Keep up to date TALK to us Don't leave a patient without any hope Be willing to make referrals when appropriate "Provide the patient with more info. The only reason I realized that walking was actually helping my dizziness was because I found the info. on the Internet. My doctor didn't suggest anything except for prescribing Meclizine and I wasted an entire week lying around in bed!" "It would be nice to receive consistent information. The Internist prescribed Antivert...the Otolaryngologist told me not to take it...it delays the inner-ear's relearning of balance, etc." "Doctors should attend a local dizziness support group meeting." "When they don't have the answers, they should have a next level up to send you to." "Don't be so quick to operate" "When common diagnoses don't fit, look for other possibilities." "Believe us!" "Have an ENG test done on every doctor so they know what it feels like!" "Petition FDA to allow more effective medications." "Have a database of information that patients can view." "Give patients written information." "Give us hope for recovery." "Provide more options for treatment." "Tailor examinations of your patient to their individual symptoms." "Realize that it changes your life and that you will never be the person you were or that you want to be."45. On a scale of 1 to 10--with 1 being the least and 10 being the most--how severely would you say that your vestibular problem impacts the quality of your life?
4% 1 6% 2 12% 3 11% 4 13% 5 6% 6 11% 7 15% 8 7% 9 11% 10 3% No response to this question46. Which of the following best describes your current attitude?:
28% I am resigned to the fact that I'll probably be dizzy forever and I just need to deal with it. 43% I feel confident that with time, my dizziness will either go away, or a cure for it will be found. 21% I don't feel strongly one way or another. 8% No Response to this question
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