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    Old 06-11-2004, 11:03 PM   #1
    coryb
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    Unhappy Two separate inner ear problems?

    Hello, this is my first post on this, or any, forum regarding my dizziness problem. Sorry if this post is LOOOOOOONG. I have been through a long and painfully exhaustive experience.

    I just turned 22 and graduated from college. The dizziness has been a huge problem for over 3 years now, but the problem started back when I was in 7th grade. I had vestibular neuritis which caused me to lose all useful hearing in one ear and made me experience severe vertigo (spinning) for about a week. My dizziness was better for 6 years afterwards, but then began gettings worse. I began experiencing moving sensations in my head (no spinning) when I would sit still and try to read a book or the computer. Unable to control the dizziness with medication, my doctor said that a surgical nerve section was a necessary next step. I told him that I sometimes would get ringing in my good ear and have periods where things were harder to hear. He told me that it was nothing to worry about because he could not see any evidence of problems in that ear. He said that there was a 98% chance that I would feel almost perfect after I recovered from surgery. However, this has been far from the case.

    After the initial month of recovery, my dizziness seemed to change, but it did not go away (or get better). In fact, it seems to be getting progressively worse. Although the dizziness never goes away, it does seem to vary in intensity from day to day and week to week, and it has taken on various forms. And all of the manifestations of the dizziness are very hard to describe! Basically, I can describe it as a sense that my balance is not right in my head, and have a constant floaty head sensation. I also have all sorts of pressure sensations on the inside of my head. I often get a headache that seems to be focused in the middle of my forehead under the surface. I occasionally will have a pulse of movement sensation or a much stronger vague sensation that my balance is not right. This pulse lasts about a second.

    And I have continued to have a major problem when reading a computer screen or book (a big problem for a computer programmer). For some reason, my eyes seem to have a hard time focusing where I try to tell them to. And if I force myself to fight through it, it usually will get worse. Many nights I have finished my work and gone to bed and had all sorts of movement sensations in my head going in every which direction. This in turn makes me restless. This is the absolute worst experience of all!

    I think my original doctor initially thought it was just an anxiety problem and told me to just not worry about it and gave me valium (along with some diuretic, zyrtec, verapamil for possible migraines. He didn't believe me when I told him that I felt worse than before the surgery! I saw a second doctor who gave me balance tests (said the spinning chair showed a possible CNS problem) and sent me to physical therapy, which did not help much (or at all). Went back to the original doc and he eventually said I had a hydrops (but seemed to say so reluctantly). He retired last year and I saw another doc. She told me that a Hydrops meant I had Meniere's (I asked if I possibly had Meniere's). I ended up going to see a FOURTH doc who gave me the balance tests AGAIN. He said that it showed a possible response from my surgically disconnected ear and so he has given me three injections of some antibiotic to kill the existing balance system. This has not appeared to help. He says not to worry about my good ear; it does NOT have Meniere's or other problems despite the fact that I still have occasional tinnitus, noticeable hearing drops, and some feelings of pressure. He says that my hearing in that ear has been stable on all audiology exams and there is no drop in lower frequency hearing. And he has not had anybody in his past work that had these problems after a nerve section.

    Does he know what he is talking about? Do you think I have another inner ear problem with my other ear? If so, what can I expect as far as possible recovery? I know that NOBODY believes what I say when I talk about how bad my dizziness is, and how difficult it makes it to read, concentrate, think, or do the most basic tasks. Not even my parents seem to think it is a major issue and tell me to just deal with it. They think I might be going on at about 80%. Right now I don't even know what I am running on because I have totally forgetten what normal is like. But I do know that I am running at less than 50% and it seems much worse. I do not have a job right now and my existence on my parents' insurance will be dropped in two weeks! I am getting desparate now. Does anybody have any advice? I could ramble on and on about more of these problems, but I know this thing is way too long already

     
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    Old 06-11-2004, 11:32 PM   #2
    Ninamarie
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    Re: Two separate inner ear problems?

    Oh dear you haven't had a good time of it, have you, and to have such unsympathetic people around you makes it all so much harder. You will find good support on this board from people who understand and will give you good advice on the type of specialists you should see. I won't chip in with advice myself, I'm not really the one to be giving it, battling too much and we just cann't get a handle on precisely whats going on for me, but at least I have support and sympathetic doctors, took a long time though and have been through the nobody believing or understanding bit. I get all the internal head movments, can be very scary at times, but take heart, they're not fatal. I do emphasize with you, and you so young. They'll be lots of responses for you on this board so watch this space and hang in there.

    Last edited by Ninamarie; 06-11-2004 at 11:34 PM.

     
    Old 06-12-2004, 12:20 AM   #3
    Billy2310
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    Re: Two separate inner ear problems?

    Cory I,m 43 Ive been suffering from vertigo and off balance problems for five years, I worked full time but 40 days ago I told my wife I found out there is surgery for bppv and I cannot keep working when I feel 50%. I use to bench press 300 pounds but I am not superman vertigo can bring you to your knees and It will try to destroy your life but you can never give up hope! If my surgery does not work I will have to get a desk job I have pride if I have to walk with a cane I will but I will never give HOPE! GOOD LUCK!

     
    Old 06-12-2004, 05:41 AM   #4
    Emsybobs
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    Re: Two separate inner ear problems?

    Cory - welcome - you are in the right place. I have inner ear dysfucntion from lab'itis and have had it for nearly 2 years.

    You have been through an awful time, really feel for you. How long did you try the physio for?

    Sounds like everyone has been saying different things to you which must be v confusing, you need to find a neurotologist.

    Do you fing things like walking in the dark tricky?

    I am 24 and have had to move home with parents after leaving at home at 18, so I know how that feels - life gets put on hold as does social life cos you feel so rough as does your independence.

    Thinking of you xxx

    Last edited by Emsybobs; 06-12-2004 at 05:42 AM.

     
    Old 06-12-2004, 11:38 AM   #5
    coryb
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    Re: Two separate inner ear problems?

    Thanks everybody for the replies.

    I won't say that my current doctor is unsympathetic or that my Dad has bad intentions either. It is just the fact that I don't think that either of them understand how bad my situation is. And I understand why it is hard to see. I am very intelligent and graduated with a 4.0 GPA in computer science. But a large amount of that is how much independent studying I did before I even reached college and before I had major balance problems. And also, I have had to pick and choose when I study or work on projects. Sometimes I just can't work at all, and other times if I work for any extended amount of time, I pay for it later (like one of those restless episodes I said previously). It would seem to an observer that I should be able to just go about my business and be fine, but nobody can possibly see the internal struggles I am going through. I can't even imagine all of the things I would have been able to accomplish if I was without this problem.

    The biggest problem is probably the fact that working on my computer and doing anything that requires a lot of concentration is where I have a lot of trouble.

    Emsybobs, I had PT for about 2 months. I was doing various VOR and balance exercises. However, all of the balance exercises I was able to master, and the therapists said they had run out of things to try with me. So that's when it ended. And when I did balance tests with my current doctor (all of my doctors are neurologists), he said I did very good on the platform test and my VOR was fine. I get a little off balance, but I generally do not have much trouble getting around in the dark. What is a neurotologist? Dictionary.com does not list it.

    One thing I forgot to mention in my first post was that I had an MRI almost 3 years ago (a few months before my surgery) that came out normal. Here is a list of the significant symptoms I have:

    - Constant general dizziness and imbalance that is very noticeable when I am in a sitting position.
    - Trouble focusing on text when I am trying to read a computer screen or book. Usually reading will make my dizziness get worse.
    - Trouble thinking and concentrating. Performing deep thought also seems to make the symptoms worse.
    - While the symtpoms are always there, they can vary greatly in intensity from one week to the next.
    - I have headaches and pressure feelings inside my head.
    - Tinnitus: Continuous in my bad ear. Ocassionally have ringing in good ear for about 15 secs to 1 min. Ocassionally have increase in tinnitus in BOTH ears for longer periods of time (hours).
    - Occasional pressure feelings in left ear that I cannot make go away.
    - Occasional hypersensitivity to all sounds.
    - I used to be able to forget about my problem when I played basketball. A year ago, I began having problems as I move around a lot on the court. I lose my sense of balance and cannot focus my eyes as I turn or jump. Sometimes my feet will even lose their sense and tingle for a second or so.
    - I had one and only one episode of environmental spinning (things looked like they were spinning counterclockwise). Other than this, I do not have violent spinning and no major nausea and no vomiting.

    A couple of side symptoms which aren't major problems, but are odd:
    - For several months, my good ear constantly pops (actual popping, including changes in pressure) when I move a certain muscle near my ear/jaw. It has become a nervous habit for me to pop my ear all the time.
    - When I try to go to sleep, a lot of times I will hear a very large jolt of tinnitus in my bad ear that startles me awake. Anybody know what this is all about?

    Lots of stuff! Sorry for overwhelming y'all again
    Thanks for all the help everybody!!

     
    Old 06-12-2004, 01:27 PM   #6
    Emsybobs
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    Re: Two separate inner ear problems?

    Cory - many of the symptoms you list, I have.

    I have a big prob with the dark though.

    Iahve the ear symptoms you describe. I have bouts of tinnitus and popping and fullness. Brina on here has the huge tinnitus which startles you...

    2 mths of PT is a waste of time. What I have learnt is MOST PT places just dont have a clue. Mine see me for 10mins every 4 mths and tell me that I am on the most advanced exercises and there are no others. Thats absolute **** as I have done my research - there are tonnes of exercises which the patient can and must progress to. My mum is on the case and has done her research and monitors and assesses me and makes sure I am doing the right exercises!! But believe me when I say many departments simply dont have a clue. I was telling my PT more than she knew...it was unbelievable!

    SO I'd suggest finding a neurot (they are specialists in the inner ear and dizziness) and gettting referred to a DECENT PT place. Remember you need support whilst doing the exercises. Mine dont offer it and belive me I shall be mentioning this when I see them!

    Minimum 6 mths for the exercises. Prob 1 year.

    Oh - certainly know what you mean about the "looking normal thing". My friends etc all think I look fine so must be fine. Of course this is all made worse if you are a good "coper" or a good "actor" which I am. Noone has a clue how I feel inside. This illness is cruel.

    Hugs xxx

    Last edited by Emsybobs; 06-12-2004 at 01:28 PM.

     
    Old 06-12-2004, 01:29 PM   #7
    willsmommy
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    Talking Re: Two separate inner ear problems?

    Hi and a very big welcome to the boards,

    Wow sounds like you are having a tough time of it!! These horrible symptoms are just very hard to deal with and yes you are very young too.

    I am 3 and a half years into this balance things too. Mine is like you the after effects of labs which caused minor hearing loss in the mid range frequency. Having read your symptoms they are pretty similiar to mine, or rather how they were before.

    I have not had the nerve section operation that you mention nor the gentamicine (I am assuming thats what they used) to kill off the final bit of vestibular function. Can the good side if you like just completely adapt and the brain compenstate for the lack of vestibular function on the right?

    I know many people here have the weird feelings of motion in the head, me included, had that for months lst year, dont any more as much, unless its specifc to head motion and lasts only a second or more. But I can very closely relate to that pressure feeling in the forehead region, sometimes for me it goes down int othe brifge of my nose. I think thats essentaiilly very very mild dizzyness and if its any help mine did stop and I dont get that any more.

    You do have age on your side and I think that you should take great heart that they say you will improve.

    A neurotolist is essentially a neurologist who has then gone on to specialise in balance disorders, they are essentailly better than an ENT etc as they focus and specialise on dizzyness etc day in and day out.

    I ended up seeing one after 3 years and got all the answers I was looking for. Unlike you, my ENT was not much cop. So it was a huge relief to find out what was going on. I do know that Mienieres is quite hard to diagnose, so it may well be worth persuing some further testing. That said your own ENT has seen you through alot, but you could raise the issue of tests for M to see. I also have persistent tinnitus in my left ear they say caused by the hearing loss and YES I also get very loud intrusive bursts of it usually minutes to a day long more recently, can be in my good ear also. I dont get the ear pressure that you describe however but I know many here do.

    I have only just started doing VRT to iron our some final remanents of labs after effects, but I do know it can take an age to be effective. The neurot I saw said some see astounding results in just a few weeks whilst others can take up to 3 months to see a real tangible improvement. They told me to expect a year to recover fully, I think this relates to increasing activity levels as well as simply VRT, but I think it can take a good while once the symptoms are well established. I am on the go practicallt all the time with 3 young kids so am doing much of the VRT programme any ways bey looking after them. By the way I was 27 wehen this hit me so I know how bugging it is.

    Any how, we are here for you, dont worry in the least about writing long posts, I can never keep it short either!!

    Ilia xx

    Last edited by willsmommy; 06-12-2004 at 02:13 PM.

     
    Old 06-12-2004, 02:28 PM   #8
    coryb
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    Re: Two separate inner ear problems?

    Emsybobs, I'm not sure if all of my doctors have been neurotologists, but I now know that the first one was (the one that said I had a hydrops in my good ear). I knew that he was a neurologist and otologist. I just now made the connection to neurotologist They are all probably neurotologists. Anyways, after my PT, I went back to see the first doc and he said that he could have told me that I could do all of those exercises because I go out and play basketball a lot (for many hours at a time). Both of these doctors work in the same office and medical group. The physical therapists also work in the office. The doctor I am seeing now is the only one that works separately from the others. He basically keeps telling me to exercise for 30 minutes daily and do some leg strengthening exercises (even though they are already strong?). Only the one doctor of the four seemed to be concerned at all with PT. So I am just not sure if PT is right for me or not.

    I am definitely a good actor. I am very introverted and am not comfortable showing that I am not feeling well.

    willsmommy, supposedly the left side was supposed to correct for the lack of any input from my right side. But since my dizziness has not improved, I think he finally just diagnosed me with the hydrops. And he just came out and said that it was something I was going to have to live with. My current doc also said that this problem might not go away and I will have to live with it, although he doesn't think there is anything wrong with my left ear.

    Mucho thanks, Cory

     
    Old 06-12-2004, 02:36 PM   #9
    willsmommy
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    Re: Two separate inner ear problems?

    Hi Cory,

    well on a positive note, I know someone with hydrops/mienires and they fely horrible for a long time but it has 'burnt itself out' and they are med and completely symptoms free now.

    Thast very interesting about the left ear taking over and it does make sense. I ahave also heard that if some-one does not compensate from the original problem (labs or whatever) then there is no gaurentee that they will compensate any better following the operation you describe, hope that makes sense.

    Think most people with this are good actors, frankly we would very boring peopleif all we talked about was this dizzy stuff, think it would drive others away. I personally dont talk about it to any non-dizzy they just dont get it but I do here and do those who have/or have had the dizzies. Just my way of coping I guess. I got sick and tored of hearing............is it in your mind? is it phycologicalk, why hasnt it gone yet, wow arent you sick of it yet?, gee how strange as you look soooooooooo well!! bla bla bla
    Ilia x

    PS I know you tried the VRT when you say it had no effect, do you mean that it simply did not improve your symptoms or that they no longer induced any dizzyness and still brought no overall improvement?

    Last edited by willsmommy; 06-12-2004 at 02:38 PM.

     
    Old 06-12-2004, 02:44 PM   #10
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    Re: Two separate inner ear problems?

    Cory - if you have inner ear damage then VRT is vital. If hydrops, its not, The diagnosis is therefore crucial.

    Strange you dont get any dizziness from exercises though - is this correct?

    Agree with ilia about the not telling others thing. I dont either - only to those who've been v good to me - which is only a handful!!!

    xxx

     
    Old 06-12-2004, 02:52 PM   #11
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    Re: Two separate inner ear problems?

    Ilia,

    I have read about that burnt out in various places on the net. But I am just not sure what this means for somebody who already has one side totally destroyed. Would I feel like those who have bilateral Meniere's? A lot of sites mention that Meniere's can be bilateral, but they don't seem to talk about how people with it feel.

    I'm not following you on the second statement. Are you saying that people who had a separate problem (that the surgery wouldn't correct) originally would not compensate for it any better after the surgery?

    Most of the VRT (vestibular rehabilitation therapy?) did not induce much or any dizziness in the first place (or more than I already had). Some of it was challenging at first, and I was offbalance when doing them. But after doing them a couple of times, I would generally perform very well on them. Probably the only balance exercises that I had lots of trouble with were the heel-to-toe exercises standing in place and on the balance beam. But they told me that everybody had problems with those.

     
    Old 06-12-2004, 02:59 PM   #12
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    Re: Two separate inner ear problems?

    Emsy,

    Actually, I remember one exercise that caused some dizziness. It was walking forwards and then turning with my eyes closed. A lot of the other balance exercises were pretty much just trying to maintain balance. With my eyes closed I would have some trouble, but once I opened my eyes, I would not notice dizziness.

    However, back then I wasn't having as much trouble playing basketball as I do now. So I don't know what it would be like now.

     
    Old 06-12-2004, 03:04 PM   #13
    willsmommy
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    Re: Two separate inner ear problems?

    Hi,

    Ah got ya about the VRT, thats very interesting.

    What I meant about the operation nerve section thing is this. Okay say you have labs and you dont recover well from it, that is you failed to compensate so you are left feeling dizzy etc etc. Then the operation to clip the nerve should you would think solve that as it cuts of all the incorrect impulses going to the brain. BUT since the person failed to compensate from labs..........then there is nothing to say they will then be able to compensate from the surgery. Do you get me?

    As for burnt out it simply means thatthe disorder runs ot course and is no longer active but what damage has been down is permananent but then full compensation occurs and no symptoms are present and the need for drugs to control the hydrops is no longer required. I am lead to belive that M frequently runs its course over 20-25 years.
    As for M or hydrops, apparently VRT is not much use for that as the condition is variable and fluctuates and as such compensation is harder to achieve fully as the vestibular problem is classifed as unstable as is the case for chronic BPPV.

    As for the M if you would be classifed as bilateral or unilater, I have no idea at all. am not medical, sorry. But I would think it may be the reason if it turns out you do have hydrops in your good ear as this may be affecting your ability to compensate fully.

    Ilia xx

    Last edited by willsmommy; 06-12-2004 at 03:07 PM.

     
    Old 06-12-2004, 03:16 PM   #14
    coryb
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    Re: Two separate inner ear problems?

    Ilia,

    I think I follow you. I think I recovered fully from the VN after a week of the bad spinning vertigo. However, I started having dizziness years down the line again. For awhile, it only affected me when I did aerobic exercises like Basketball. But after 5 more years, it began to bother me all the time. When it didn't respond to medications (like promethazine and others), the doc said surgery was the way to go. It may just be coincidence, but the dizziness started bothering me all the time after I flew for the first time. The doc just said it was because of all the movement, but I'm not totally sure.

    Cory

     
    Old 06-12-2004, 03:20 PM   #15
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    Re: Two separate inner ear problems?

    Hi Cory, ah yes I get you know!! lol, me whos muddled.

    I dont have any suggestions as to why that recured, did the doc think it was related to the initial labs you had? that you had decomp or something? I can relate to playing basket ball bringing on symptoms, I get worse when I do alot too and put it down to all the extra motion and head movments.

    Not sure about the flying thing, I alway get a sort of dealyed response to such activities, whcih generally goes on for a few days and then the usual stauts quo returns.

    Ilia

     
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