63 people responded to the survey.. Some answered every question some did not apply to them and some they chose to leave blank. I hope this helps all of you see how similar we are and most important how baffling a vestibular disorder can be in terms of getting a diagnosis, in getting the right ENT, in finding a cause, and most important how this effects our everyday lives.
1. Females- 58
Males - 4
2.What is the your age?
Sixties or older - 4
3.At what age did this dizziness start?
Childhood - 1
Twenties - 11
Sixties - 2
4. How many months or years have you been affected by this?
1. 6 months or less - 5
2. 1 to 3 yrs. 27
3. 4 to 7 yrs. 15
4. 8 to 12 yrs. 6
5. 12 to 16 yrs. 7
6. more 3....one as long as 40 yrs!
I was rather disheartened by the length of time..though after almost 7 yrs of suffering with this I wasn't surprised...
Which of these tests have you had performed and how many times...results...
a} Bloodworkups- 49 of us have had so many bloodtests done and only 4 of these had any positive results.
b} 3 hr. Glucose test for hypoglycemia- 17 have had this done and 4 positive results
c} MRI of the brain and arteries- 37 have had this done....4 positive results..13 of us had this done more than once.
d} mer of the inner ear...17 had this done...all negative..one inconclusive
e and f} ENGs- 45 have had ENGs just tracking and w/ calorics...24 had positive results, 14 had negative,5 had both positive and negative at different times...2 were declared inconclusive
Even though 14 had negative results these people still suffered chronic imbalance.
g} postuography- 16 had this done and there were 4 positive results
h} rotational chair- 18 had this done and there were 3 positive results
i} audiogram for hearing- 50 had this done...32 were negative..14 were positve..4 were negative at one time and positive at others....many is not all had this test repeated over and over
j} test for hypotension or low blood sugar..18 had this done..1 positive result
k}neurological exam-..40 had this exam ...4 positive results
l} auditory brain response- 24 had this done...1 tested positive
m} electrocochlography...19 had this done...5 tested positive
n} platform fistula test...6 had this done...2 tested positive
o}cardiac workup....22 had a workup...3 tested positive
P} misc. testing...spinal tap, cat scans of sinuses, EEG, Baer test, allergy testing, echocardiogram, EKG, EMG, EEG, autonomic testing, chest x-rays, neck and spine x-rays, shilling test, nuero psych testing..
6. How many drs. have you seen since the onset of your symptoms and name their fields of medicine?
1. Primary care and Internists...almost all of us have seen one or more.
2. ENT's there were 45 who say they have seen an ENT...29 have changed ENTs...and the 45 who have seen an ENT we have seen a total of 116!!!! which means that we are never fully satisfied with the ENTs we go to...
3. neurologists....40 of us saw them...10 have seen more than 1.
4. nuero-otologist 12 have seen one.
11. eye drs.
15. natural healer
16. kidney specialist
17. sports med.
18. a specialist in mental health
7.If you have changed ENT's over the course of your illness why?
1.could not obtain a diagnosis
2. unhappy with manner or attitude
3. disagreed with his diagnosis
4. ENT didn't believe his patient
5. Wanted a second opinion
6. ENT said it was all in patient's head ..heard this one more than once from a lot of you
7. Patient changed health plan
8. ENT relocated
Many of us changed ENTs simply because we could not get a proper diagnosis...and many of us just felt that the ENTs manner was anything less than sympathetic..one ENT called the patient a dizzy dame. .some others were told it was in their head...
8. After all testing was done what was the name given to your vestibular disorder.. if no diagnosis could be given just state this.
1.Menieres 23 of you had this diagnosis
2. 13 of us had no diagnosis given
4. endolymphatic hydrops
5. acute labrynithis
6. bi lateral PLF
7. Migraine related imbalance
8. brain tumor
9. cervical spondylosis
10. cervical vertigo
11. chronic sinusitis
12. utricular dysfunction
13. dysequalibrium caused by cochlear concussion
14. total vestibular dysfunction
15.seasonal related migraine
16. vascular compression of the 8th cranial nerve
17. vaso-occlusive vestibulopathy
9 Name meds that work? I only gave you the top 15 responses
Valium seemed to work for vertigo .....xanax for imbalance
Name the meds that you used that didn't work
antivert.....diuretics....valium...zoloft...seoplamine patch...ginko biloba...nasalcort...klonopin...claritin...allergy shots...tegretol...depakote...prednisone..compazine..
10. Have you ever asked a dr. to prescribe a certain med. to you and been told you cannot be prescribed that med. because the med. is addicting?Valium or Xanax...
16 of you asked to have these meds prescribed and were told no.. drs. were opposed to long term use...what makes this chronic disorder any different than any other illness that needs meds taken on an everyday basis?
11. What do you suffer with most?Chronic inbalance..24.....chronic vertigo..7...or both 32
12 How often do you suffer with vertigo attacks and how long do they last?
some every day.. for seconds to minutes to hours....every few days...for seconds to minutes to hours...some full-blown attacks last for days to weeks.. some suffer at certain allergy times of the yr. and then they go away.. there is no rhyme or reason to these attacks.. every persons varies in time and degree
13. Is your imbalance chronic meaning everyday?42 of you said yes.. this is significant as to how chronic this can be once it strikes you...
14. Name all the symptoms you suffer that come along with the imbalance and vertigo no matter how insignificant...
These are in order of the number of responses:
Panic is number one...and this should be no surprise...Light sensitivity...pressure headaches...eyes out of focus...memory loss and concentration problems...loud noise sensitivity...fatigue...ear pressure...nausea.. hearing loss...stiff neck and shoulders...ringing and popping and other sounds in the ears...brain fog...inability to look up and down...weak muscles...barometric changes make symptoms worse...menstrual cycles make it worse.. sensitive to dark...inability to sleep, difficult to read small print or on colored paper, speech difficulties, slowed reflexes, lack of coordination, inability to have more than one conversation at a time, tingling in head and arms, problems with legs in balance because you favor one leg, sweaty hot feeling
15. Do you suffer with Tumarkins Otolithic crisis.. these are drop attacks last for seconds...28 of you have these...if you have ever had a dr. look at you puzzled tell him this is a very real phenomenon....
16. Name cause of imbalance...if none say so...
1. No none cause...37 of you say you have no clue why!!!!!
3. sinus infection
4. woke up after surgery
5. numerous ear infections
6. inner ear canaliths
7. severe head injury
9. minor head injury
10. possible childhood head injury where you blacked out for a few second
11.seasonal related migraine
12. gentamicin or other antibiotics toxic reaction
13. car accident
14. decent of an airplane
17. Are you married?50....divorced? 5...single?...8...children?...43
18.Are you still employed?25 are still working...almost everyone is finding it difficult
19.Have you had to give up working due to this disorder?29 of you have had to leave your jobs or careers...
20 Have you applied for Social Security Disability?
16 of you have applied for benefits.....all rejected at least 2 times...6 have filed for a hearing...2 were rejected at hearing...6 have won a favorable decision
21. Please answer the following yes or no....
a. can you still drive?48 of you still can...some didn't drive before
b Can you clean?51 said they can but its difficult and you often need help...7 can't clean
c Can you still take a shower?58 said yes but most need to hold onto a pole or the wall....they can't close their eyes...they often sit when dizzy.
d Can you take short walks alone?49 do so but most don't do it alone and they don't go without someone...they have to walk with something on the sides of them so they can steady themselves
e Can you do your shopping alone?41 of you can but you say that it is difficult and a lot of you bring someone...22 don't go alone anymore.
f. Do you find store lights unbearable?33 of you do have problems...and often feel like you are going to fall over and need to wear your sunglasses
g. Can you engage in any sort of exercise?42 of you do because you say that your ENTs told you to.. others have it part of their vestibular rehab routine.. the ones that don't find it makes the imbalance worse...during a vertigo attack this is impossible.
h. Do you have difficulty reading?42 say they do
i Do you have problems with memory and concentration?almost 80% of you said yes!
j Do you feel that you need to take many breaks during the day for relief?this was overwhelming yes!
k Do you find that you are more tired now than you used to be?Yes from almost all of you.
l Are you more irritable with people than you used to be?..39 of you said yes
m Do you feel you suffer with more panic attacks now with the imbalance?38 of you said yes
n .Does wearing bifocals make your dizziness worse?13 of you said yes that wear them..14 said no
o .Does watching tv bother you?25 of you said yes
p Do you feel you need to rely on family and friends more now?47 of you said yes absolutely!!!!!!
q. Do you have the complete understanding of spouse or significant other?38 of you said you did...others have a hard time getting their partners to understand
r Have you lost friends as a direct result of the imbalance?16 of you said yes
s Do you feel alone in this battle most of the time?52 of you said YES
t. Can you travel?..38 said they can but most said not by plane.. and driving long distances in the car makes you sick.. and cruises are a no no.. some have though not given up travel by air but don't do well....18 can't travel anymore they way you once did
u. Do you need a cane for support?only 10 of you use a cane
v. Do you have difficulties taking care of your children?16 said yes...most of you have trouble with grandbabies...and a lot of your children are grown and seem to help you more.
w Can you shop at a mall?...32 say yes...but they don't stay long...don't go alone...and often get sick..
x Can you go to a movie?37 say yes...but need ear plugs...can't sit up front...
y Have you ever once felt like giving up?...ABSOULUTELY from 48 of you...but you don't because of family and friends.. and God
22. Has the onset of this been the direct result of a relationship or marriage ending?
2 said yes....others expressed concern that it does affect their relationships
23.Have you had the Eply maneuver done?15 of you have
9 of you had no success.....the rest had somewhat to good results
a few had to have the procedure repeated more than once
24. Have you gone through Vestibular rehab?
27 of you have.....4 had success.....7 had some success......16 have no change...some though are just starting it as of the survey so we don't know their outcome yet
25. How much money do you think you have spent out of pocket to find a cure for this.......18 of you spent less than 1.000.....20 have spent 1.000-5.000....9 have spent over 5.000
26.Have you tried Vertigoheel..11 have tried it....6 had success....the rest didn't or it made them feel worse.
27. How many of you had ear surgery done? and what kind
surgery for 8th cranial nerve ,,,,,,plf surgery 2x's....tubes in both ears...endolympatic shunt which lasted 4 yrs.and then had subarachonoid shunt lasted 2 yrs but with no success....had tumor in inner ear removed..and resect the vestibular nerve which made the symptoms worse...controversial brain surgery took 2 yrs to feel better...endolympatic shunt surgery that didn't work..
28 Has a dr. ever sent you for a psychiatric exam...16 of you were sent and were sent more than once....seems a lot of drs. after not being able to obtain a diagnosis just naturally assume its in your head...
29. Rushed to ER for this disorder
10 times or less....22 of you have been in the ER
30. Been admitted to the hospital as a direct result of this imbalance?
11 of you have been there 5 or less times...1 has been there 5 or more...1 has been there 10 or more times
In conclusion...its appears...that a lot of share in the fact that we have no idea why this happened to us...that we have a very difficult time being diagnosed and because of this and with the attitudes of many ENTs we find ourselves searching for answers and spending a lot of our own money to do so...the longer we go on suffering with this the more likely that we will be forced to give up our careers and jobs...a lot of us who are students can't finish our education and even if we are fortunate enough to get our degrees we are unable to work...we have a very hard time getting others to understand. including our spouses and our immediate family....a lot of meds that are usually prescribed for dizziness don't work for a majority of us and the drugs that do work are not readily prescribed because of their addicting nature so a lot of us are left to suffer with the symptoms of the imbalance or the vertigo instead of our drs. taking the time to outweigh the pros of these meds rather than the cons.....
Once stricken with a vestibular disorder it is usually chronic and with no cure we can only hope that with meds, and rehab and certain treatments that we can achieve some improvement...due to most of us being unable to work we are forced to seek Disability benefits and this in itself is a major obstacle..with so many of us unable to gain a diagnosis and with the govt's ignorance of vestibular disorders we are often rejected and are forced to spend yrs. trying to appeal our cases some have success some not...
What we are though is a spirited, strong willed, determined group of individuals who live everyday with fierce determination...this is the only way to survive this disorder. I truly believe that it takes an amazingly spiritual person to live with this. There is no other non-life threatening illness that so affects every aspect of your life as does a vestibular condition.
Hopefully someone will read this and understand...what we live with everyday of our lives