It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Inner Ear Disorders Message Board

  • Misdiagnosed and confused??????

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 01-04-2006, 05:25 PM   #1
    manchak99
    Senior Veteran
    (female)
     
    manchak99's Avatar
     
    Join Date: Dec 2005
    Posts: 771
    manchak99 HB User
    Misdiagnosed and confused??????

    this was the post i put on the anxiety board until i got a response from someone...see below and now i'm here......and confused.
    "hi all...after some posts here and there on this board, i got the call today with the results of my blood work...all normal....doc wanted to have my cholesterol checked, thryoid and sugars.......have a brain fog-dizzy/lightheaded feeling since October! started with sinus infection but all other symptoms cleared except the wierd feeling of me being 'off.' sometimes at night, my heart races when i'm trying to sleep.

    so.....after all this time, i've been given the official dx of anxiety....espeically since over the past couple of months, i have a problem being in stores (did all my xmas shopping for the first time ONLINE!)...feel off balance and want to get out quickly.....

    doc prescribed zoloft and atavan......anyone else only have this symtpom and did it go away with meds?

    want myself normal again! used to be a shopaholic....would spend hours by myself in a mall with NO worries! all this started before my sister's wedding in october along with a sinus issue."


    response from anxiety board:
    manchak, sinus infection leading to dizziness/balance problems and brain fog sounds very suspicious of an inner ear problem. Please visit the inner ear board. The dizziness you experience in stores is due to your VOR, vestibular occular interaction. There are dozens of people over at the inner ear board who have the exact problem going to malls, busy stores, airports, driving with windshield wipers, etc, including me. Your occular input is not quite in balance with your inner ear input, the imbalance leads to the dizziness. There is a good possibility you are developing anxiety resulting from the inner ear thing. Unfortunately, milder inner ear problems are very hard to diagnose, many people go from dr to dr to ear specialist to ear specialist. You can take "ENG" tests, but unfortunately the results are very hard to interpret. Unfortunately, many people have the same problems you specify for many years. Just curious, did you take antibiotics for your sinus infection, and if so, which one and for how long? I suspect the antibiotics I took for 3 weeks straight actually contributed to my vestibular problems.


    so...my question is....is this response correct...do you all have issues like i do....feel off balance or lightheaded (faint but i never do actually) when in malls or grocery stores....i haven't been to an ENT.....i'm very confused now.......

    thought i felt good with an actual diagnosis but i'm concerned now that it's the WRONG one!

    manchak99

     
    Sponsors Lightbulb
       
    Old 01-05-2006, 05:29 AM   #2
    hbep
    Senior Veteran
    (female)
     
    hbep's Avatar
     
    Join Date: Jan 2003
    Location: UK
    Posts: 1,480
    hbep HB Userhbep HB Userhbep HB User
    Re: Misdiagnosed and confused??????

    Hi Manchak,

    Yes, I agree with the post you got, sounds like you have an inner ear problem. Dizzy disorders are a much misunderstood field. Many people on this board get anxiety diagnosies to start with due to the incompetence of ENT and general doctors. Like you, for me it all started off with brain fog and lightheadedness, no true vertigo (either spinning or the sensation of motion when there isn't any) and for this reason 2 ENT's diagnosed me with either nothing or anxiety. I had a full sensation in both ears - which is one of the reasons I knew they were wrong. It was only when I developed vertigo along with everything else at 8 months in that I got the correct diagnosis.

    ENT docs don't do any further training in to the inner ear (although they don't tell you that) they are often very incompetent in this field. The real specialists are called neurotologists (different from a neurologist) they do a further 3 yrs training on top of ENT training in to the inner ear. They can usually spot this type of disorder a mile off. Other docs mess around with blood tests etc... don't do the correct balance tests, don't understand the condition and because you say you are dizzy and are having panic attacks and anxiety, assume it's all down to anxiety. People who are really specialised know that a vast proportion of people with an inner ear disorder suffer from anxiety for a number of reasons 1) because feeling like this can be terrifying 2) because when your balance is off you frequently have an unconscious panic reaction - due to the inner ear disorder your brain registers that something is wrong - namely ' I am falling,' or ' I don't know where I am in space' and triggers an anxiety response which is beyond your control. There have been articles written on this very topic.

    Everyone on this board will recognise the brain fog, lightheadedness and particularly the problems in shops, the latter is an absolute tell tale sign of an inner ear disorder. Because your vestibular function is off, your eyes take over some of the work your vestibular apparatus would normally be doing. Because your eyes aren't designed to do this job - the more visual input you have going in, the more dizzy you feel. Shopping becomes very hard due to the rows of clothes, aisles, etc... Most people with a vestibular disorder feel much more off balance when shopping.

    In my opinion your anxiety diagnosis is a turkey. Mental health professionals simply don't know enough to recognise the difference btwn pure anxiety and the anxiety that comes with a vestibular disorder.

    Don't be concerned if you read posts on here where people are experiencing vertigo and you aren't, as I said, I did later on (don't worry, not everyone develops vertigo, many get better without ever getting that part of the package) but intially and for many months I had no vertigo at all.

    The therapy for this condition is to keep active, eventually the brain learns to compensate for the damage to the vestibular (balance) nerve. In short, this means it learns to decifer the faulty signals coming from your damaged ear and learns to work with them. Don't overdo it, that can tax the brain too much, little and often is the key. If the condition doesn't clear up on its own, a trip to a neurotologist is a good idea, they can give you exercises called VRT which help the brain along in learning to compensate. Occassionally peoples' balance problems are down to other things, the most common one on this board is MAV, migraine associated vertigo, a type of migraine often with no headache that manifests as dizziness/lightheadedness and/or vertigo. If it doesn't clear up they could also check out if that is an issue in your case.

    Also, don't be scared by stories of people who have been ill with this for years, they (and that includes me unfortunately) are the minority. Most people get over it in a few months and only occasionally suffer relapses with a cold, or under stress etc....

    I realise this must be a lot to take on, but I only sound so sure in what I say as it takes one to know one. Read through peoples' experiences on this board and you will be surprised by how many people you find with similiar experiences to yourself. The way I finally found out what was wrong with me was from a friend of a friend who had been through the whole ordeal, also had a duff anxiety diagnosis and then found the right specialist. He tipped me off as to what was going on and pointed me in the right direction. I am having a relapse at the moment, I feel grossly lightheaded, my vision feels odd, I feel disconnected and lots of visual stimulus makes me feel worse, sound familiar?

    best,
    __________________
    hbep

    Last edited by hbep; 01-05-2006 at 05:38 AM.

     
    Old 01-05-2006, 05:29 AM   #3
    Nina81
    Newbie
    (female)
     
    Nina81's Avatar
     
    Join Date: Oct 2005
    Posts: 3
    Nina81 HB User
    Re: Misdiagnosed and confused??????

    Hi there,
    sorry to hear that you've been having problems but all your signs seem to be the exact same as mine! Mine started a few months ago - sinus problems, fullness in ears, ear popping, lightheadedness on and off, a strong pulsing in head which passes after a while.. these signs have also come on me when out shopping in certain malls!! I've been to an ENT doctor and he said there was nothing wrong with me and prescribed me nothing! He said anxiety must be causing these things but i'm not a nervous person so I really don't know... everything has eased off now but if they happen again i'm not sure where to go next..

     
    Old 01-05-2006, 09:23 AM   #4
    manchak99
    Senior Veteran
    (female)
     
    manchak99's Avatar
     
    Join Date: Dec 2005
    Posts: 771
    manchak99 HB User
    Re: Misdiagnosed and confused??????

    thank you so much Hbep.....I'll go to an ENT to see if there's any info i can get out of him.....

    thanks alot. Either or....whether it's anxiety or an Inner Ear Disorder...sounds like i have to get used to things like this to make everything calm and normal.......

    take care and Happy New Year...hope you get out of your fog sooner than usual!
    manchak99

     
    Old 01-05-2006, 10:06 AM   #5
    manchak99
    Senior Veteran
    (female)
     
    manchak99's Avatar
     
    Join Date: Dec 2005
    Posts: 771
    manchak99 HB User
    Re: Misdiagnosed and confused??????

    one more thing...will an ENT actually see BPPV? I'm just wondering how they will tell if it's anxiety or an inner ear disorder?

     
    Old 01-05-2006, 10:19 AM   #6
    crazylabyrinth
    Senior Veteran
    (female)
     
    crazylabyrinth's Avatar
     
    Join Date: Sep 2004
    Posts: 1,050
    crazylabyrinth HB User
    Re: Misdiagnosed and confused??????

    Hi there

    They can tell by performing inner ear testing - this is used to diagnose. Another manouver called the "dix-hallpike" is used to diagnose BPPV and is simple to carry out by the right specialist.

    In the info archive at the top of this page - you should find relevant info.

    CL xx

     
    Old 01-05-2006, 10:47 AM   #7
    hbep
    Senior Veteran
    (female)
     
    hbep's Avatar
     
    Join Date: Jan 2003
    Location: UK
    Posts: 1,480
    hbep HB Userhbep HB Userhbep HB User
    Re: Misdiagnosed and confused??????

    As CL says, there are tests that can be done called an ENG and a rotary chair which will sometimes confirm if you have damage to your inner ear. These tests aren't always conclusive. Generally it takes an experienced doc who recognises an inner ear disorder and generally this is a neurotologist. As CL suggested, if you have a good read of the posts in the information archive at the top of the page it should provide lots of info.

    You can try an ENT, but as I said, they are often useless with dizzy disorders. It was 2 ENT's who misdiagnosed me with anxiety. You might want to find out if they have an interest in dizziness, otherwise you might end up being very dissapointed. Or simply diagnosed with anxiety again. I know it's hard to believe when you've seen doctors and they've run tests that they might not know what they are talking about re an anxiety diagnosis but believe me, it really is very common when it comes to dizziness, particularly as they often run all the wrong tests.

    It is highly unlikely you have BPPV. This causes very specific symptoms which include spinning vertigo when your head is in certain positions. It's just one of the inner ear disorders people get. Nothing you said would make me think you have BPPV. You are far more likely to have either vestibular neuritis (also known as labyrinthitis) or possibly (less likely) migraine associated vertigo. There is more information on these in the info archive I mentioned.

    I would do a lot of reading in the info archive and on the board generally, it will give the lay of the land so to speak,

    best,

    Hope this helps,

    best,
    __________________
    hbep

     
    Old 01-05-2006, 02:43 PM   #8
    manchak99
    Senior Veteran
    (female)
     
    manchak99's Avatar
     
    Join Date: Dec 2005
    Posts: 771
    manchak99 HB User
    Re: Misdiagnosed and confused??????

    you're so helpful....really puts me at ease.....my doc did a catscan to test for labyrinthitis......came back clear.......

    i'll do some research on the topics you both suggested......please know i enjoy talking to you

    one more question....is this something i'll have to deal with FORever?????

     
    Old 01-05-2006, 03:24 PM   #9
    hbep
    Senior Veteran
    (female)
     
    hbep's Avatar
     
    Join Date: Jan 2003
    Location: UK
    Posts: 1,480
    hbep HB Userhbep HB Userhbep HB User
    Re: Misdiagnosed and confused??????

    Hello,

    I have no idea which doctor told you a cat scan could test for labyrinthitis, either you heard this wrong, or they were talking nonsense. A cat scan can not test for labyrinthitis. A cat scan could possibly look for an acoustic neuroma, but that's about all you can see regarding the inner ear on that type of test. This is a medical fact, not my opinion. The only tests that can look for vestibular damage are the ENG and rotary chair tests (completely unlike a catscan.) Without doing those (and even those tests aren't conclusive) no doc can tell you, you don't have labyrinthitis.

    As I said in my first message to you - 'don't be scared by stories of people who have been ill with this for years, they (and that includes me unfortunately) are the minority. Most people get over it in a few months and only occasionally suffer relapses with a cold, or under stress etc....

    hope this helps,

    best,
    __________________
    hbep

     
    Old 01-05-2006, 04:49 PM   #10
    joy78
    Senior Veteran
    (female)
     
    Join Date: May 2005
    Posts: 528
    joy78 HB User
    Re: Misdiagnosed and confused??????

    manchak99,
    First of all, I'm sorry you are dealing with this. You do need to find better doctors who understand what is going on with your inner ear instead of doctors who have no idea. It's stressful and scary enough to deal with this and then have to worry that what your doctor is telling you is wrong. A ENT looked me straight in the face and told me that medications that supress your vestibular system like Dramamine won't hinder compensation. I read just hours before my appointment that it does, and heard it a million times from people on this board that it does slow recovery. So there is yet another example of a doctor not being completely informed and giving the wrong information to their patients. I really think you should push to see a neuro-otologist (spelling may be wrong). As Hbep said, they are the experts in the vestibular problems. You should push to get an ENG test. It may shed some light on the functioning of your inner ears.

    Another reason I wanted to write this message is because I am someone who has inner ear dysfunction who did recover. The first time I had this, I did get dizzy, and that was my main complaint. It lasted for six months, and finally got better. I was symptom free for 4 years. Then one day about 6 months ago, it came back after a bad case of bronchitis. It again lasted about 6 months and I am once agian on the road to recovery. I did get an ENG test and found out that I have a 35% weakness in my right ear. So even though I have some permanent damage (from the virus--- labyrinthitis) it is possible for your brain to compensate and feel better. Yes, I have relapses, but it does get better. Keeping yourself active is key. Your brain needs to learn how to fix the bad signals it is getting.

    Anyway, I just wanted to give you some hope that things usually get better. Try to find some good support from doctors who KNOW what they are talking about . It will help to have someone that can understand and give you good advice. Read posts on this board and search online for things about inner ear disorders. It helps to cope when you can understand.

    Again I'm sorry you are dealing with this, but there is hope for recovery, and things will get better.
    Joy

     
    Old 01-06-2006, 07:29 AM   #11
    manchak99
    Senior Veteran
    (female)
     
    manchak99's Avatar
     
    Join Date: Dec 2005
    Posts: 771
    manchak99 HB User
    Re: Misdiagnosed and confused??????

    what is an ENG test?

     
    Old 01-06-2006, 08:16 AM   #12
    hbep
    Senior Veteran
    (female)
     
    hbep's Avatar
     
    Join Date: Jan 2003
    Location: UK
    Posts: 1,480
    hbep HB Userhbep HB Userhbep HB User
    Re: Misdiagnosed and confused??????

    Hello,

    If you go to the information archive at the top of this inner ear board you will find an address for a site under the title Vestibular Testing by Timothy C Hain. Go to that address and it will explain about the different tests for inner ear disorders of which the ENG test is one.

    Hope this helps,
    __________________
    hbep

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    Misdiagnosed with bipolar disorder Dbop Bipolar Disorder 2 07-08-2008 08:45 PM
    Misdiagnosed Skin Disorder Turns Out To Be Lichens Sclerosis MuleKistWoman Skin Problems 3 04-21-2007 09:34 AM
    Confused...can doctor have misdiagnosed me? akalei Herpes 2 01-22-2007 11:39 PM
    misdiagnosed with GERD? melanieg Acid Reflux / GERD 7 11-20-2006 10:21 PM
    misdiagnosed? lkrefft Polycystic Ovary Syndrome (PCOS) 0 07-01-2006 08:29 PM
    Why one man was happy to be misdiagnosed MotorNeuron Amyotrophic Lateral Sclerosis (ALS) 4 09-22-2004 08:57 AM
    my misdiagnosed epilepsy maggie39 Epilepsy 0 07-22-2004 12:51 PM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 07:12 PM.





    © 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!