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    Old 03-09-2005, 05:52 AM   #1
    Wowwwweeee
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    Cool Resolution is not always possible

    Hi,

    There are always a few posts where the sentence ends with "...but it should clear up completely..." (paraphrasing).

    I've been talking to some different specialists, and the general feedback that I am receiving is that not everyone who has an inner ear disorder causing imbalance will find a complete resolution or cure. This goes along the same lines as two people who dealing with the same inner ear condition - one person bounces back in two months, the other person continues to deal for a year or so. One person can have residual symptoms for months or years, and the other person never experiences an issue again.

    Sometimes I think there is too much emphasis on "oh, it should clear up in a few weeks or months", and not enough practical feedback that a person may expect to deal with his/her symptoms for a very long time or with no end in sight. I think that's why so many feel so frustrated and scared when symptoms reappear or don't go away in the expected or provided time-frame.

    Vertiginous symptoms may change over time, and for many that does include bouncing back to either full recovery or to a place where they can tolerate and/or "live again" with symptoms, but also, many times, if compensation cannot fully take place or damage has been done that cannot be reversed, a person may have to expect to deal with symptoms on some level routinely or sporadically throughout their life.

    Additional thoughts and comments are welcome. xo

     
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    Old 03-09-2005, 07:51 AM   #2
    scant5
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    Re: Resolution is not always possible

    My own personal feeling on this is I don't believe there is one specialists who can give you a rock solid conclusive answer on what you have. I know there are a handful of specialists who certainly are brilliant in their field but since our symptoms are of such varying degrees it would certainly seem almost impossible for a conclusive diagnosis. I believe we all have a general idea where this is coming from, especially learning from this board. I also believe there are some cases out there such as yourself, CL and others who need to continue to look for answers because you have suffered for to long. I feel I am one of the fortunate ones who truly believes that one day all my symptoms will disappear. It can take months now before I see another step forward....but it is always forward. For me, and it just might be my case....I never gave into the...you may always have these symptoms. I hated those feelings of imbalance and since there is no solid proof you won't get better, I just keep pushing forward in miniscule steps. I want to be able to say someday, that I have fully recovered. I do know people who have taken literally 3 or more years to recover, but they did. I mean absolutely no disrespect on your view of this because you are so inspirational to so many and so full of wisdom especially when you suffer so much. I believe in my heart, we will all get better.

    all and only the best,
    Kathy

     
    Old 03-09-2005, 08:00 AM   #3
    Wowwwweeee
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    Scant!

    Good to hear from you! I also believe that one day my symptoms will resolve; I have come so far to where I was so many years ago, but I see too many hopeful people being told by their doctors that "it should clear up in a few weeks" only to be crushed when they realize they are in for the longer haul. Me, I never give up, even if I get knocked down emotionally from time to time.

    I believe a few weeks ago you posted on another thread asking about the names of doctors in the states that LL from London told me to contact - I'm not sure if I am allowed to post specific MD names.

    Also, didn't you say you were in upstate NY, too?

    Hugs! xo

     
    Old 03-09-2005, 08:26 AM   #4
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    Re: Resolution is not always possible

    Hi Wowwwweeee:
    I appreciated your very realist post.
    I think the key with this is learning to cope. Although some people do get better, and even those who don't completely recover may improve a lot, a large part of this is learning to adjust to new limitations. You CAN get your life back. It will be different, but you can continue to live and even thrive.
    I'm not saying it is fun or pleasant, (adversity never is) but it can be productive and positive.
    And there's my two cents worth.
    Elisabeth

     
    Old 03-09-2005, 08:50 AM   #5
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    Re: Resolution is not always possible

    Quote:
    Originally Posted by Wowwwweeee
    Scant!

    Good to hear from you! I also believe that one day my symptoms will resolve; I have come so far to where I was so many years ago, but I see too many hopeful people being told by their doctors that "it should clear up in a few weeks" only to be crushed when they realize they are in for the longer haul. Me, I never give up, even if I get knocked down emotionally from time to time.

    I believe a few weeks ago you posted on another thread asking about the names of doctors in the states that LL from London told me to contact - I'm not sure if I am allowed to post specific MD names.

    Also, didn't you say you were in upstate NY, too?

    Hugs! xo
    Wowwweee:
    Yes I do live in upstate NY...Nice weather we're having huh!!!! Spring is just around the corner.
    They will be tapping the trees soon enough....that is my first sign of spring.

    all the best,
    Kathy
    P.S. Yes it was me who asked about the MD names, and I don't believe you can post them. Don't want to get anybody in trouble.

     
    Old 03-09-2005, 08:56 AM   #6
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    Re: Resolution is not always possible

    My thoughts on all this after having my problem five weeks ago, although with the panic, anxiety and depression I've suffered every minute of every day, it seems more like MONTHS, is this! I've read hours of posts from various members on their hearing and middle or inner ear situations, trials and errors and it seems 98% or More, have the same response. That is, after going from doctor to doctor to specialist and testing, medication, etc.,,, the doctors don't seem to know ANYTHING about these conditions!!! Seems more people who have these conditions as well as their doctors, are telling others to "just learn to cope and live with it"! And that's,,,,, pretty scarey!
    So,, what are all these doctors (worldwide) there for,, a simple Minor ear infection? What are they trained in, why do they charge so much and where is modern technology that sooooo little is known about problems such as these? We can split an atom and use that for mass destruction, but not know how to heal the human anatomy in matters such as the ear,, and more? Sorry to sound so upset, but this really does get depressing.

     
    Old 03-09-2005, 09:36 AM   #7
    Wowwwweeee
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    Scant,

    I wonder how far apart we are? I'm in Rochester. I think that's about all I can say here. Yes, today is a beautiful day! What a far difference from this past weekend, where Sunday was unbelievable with the snowing and sleeting and blowing....oh my! The birds have already started their morning song routine before the sun comes up - a sure sign that Winter is on it's last leg.

    MMS1,

    Sending you supportive hugs here. For me, the second hardest thing for me to deal with was the emotions that came from dealing with such a limited life due to this condition. I go through times of depression, anger, and of course the anxiety from feeling so funky all the time. I also mourn the person I used to be "before the head monster". My life has been impacted more than I ever thought it could be from dealing with this, and I have made many adjustments and compensations so that I could feel that I am living a "normal" life (by my standards).

    You mention anxiety and depression - I address this only because until I learned new ways to cope and react to my symptoms, being depressed and anxious made things worse for me physically (symptoms) and emotionally. Hopefully you will find a way that works for you to be able to deal with your situation so you don't feel so low. For me, it meant grabbing some counseling, doing some self-help reading, and looking at siutations more objectively (that helped me lessen my anxiety over my symptoms and sensations). It took some time for me to find a way to alleviate my stressors as it relates to this.

    I still have moments where I am depressed, anxious, angry, and sad. I think that's a normal part of dealing with an impacting event or condition. I am thankful however, that I am blessed with good health (despite my symptoms), have caring friends and family, and have a will of steel (most days).

    Feel free to vent. I have more than a few posts of my own that are truly downers - but this board is a good place to get support and encouragement to carry through the rougher moments.

    Hugs to all. xo

    Last edited by Wowwwweeee; 03-09-2005 at 09:36 AM.

     
    Old 03-09-2005, 11:18 AM   #8
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    Re: Resolution is not always possible

    Hi all

    I feel slightly unsettled at this post.

    In relation to:

    I also believe there are some cases out there such as yourself, CL and others who need to continue to look for answers because you have suffered for to long.

    Kathy - I know what you are saying but just because I am not cured doesnt mean I have not found my answers. I think there is too much info around suggesting particularly inner ear dysfunction frm labyrinthitis cant go on for a long time - this simply isnt true -and just cos some of us have had it for a couple of years, does not mean that a) the diagnosis is wrong or b) we will never recover.

    The good specialists know and have told me that this can last a long time. I was told that however many years youve had it theres never a time you can say "I wont recover". My specialist have seen people that have had it 10 years, been to the hsopital I go to, got their treatment and recovered. I dont feel you can ever say never.

    I do agree that SOME inner ear probs do not always resolve but some have higher success rates than others. I was told the fact that my damage is mild and I have no other health probs and I am only 25, it is 99% certain I will get there...a few on this board took 3 or more years...but got there.

    But some other conditions do not have such a high success rate. I agree.

    I know where you are coming from Wow, but I think before one can say there is no resolution, a firm diagnosis has to be issued, treatment followed etc.

    And inner ear stuff, it is to be remembered, is much like ME as in there is no set recovery time and it is never time to give up hope.

    I certainly havent and wont for a long time yet...

    Hugs to all xxx

    Last edited by crazylabyrinth; 03-09-2005 at 11:21 AM.

     
    Old 03-09-2005, 11:34 AM   #9
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    Re: Resolution is not always possible

    Hi Guys,

    Agree totally with CL. I am a great believer in the power of the mind. The ONLY thing that got me through this was the thought that "I will get better". Everyone MUST believe this or else throw the towel in now.

    Perseverence and Patience are the keys.

    Lizzy x

     
    Old 03-09-2005, 11:45 AM   #10
    Wowwwweeee
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    Cool Re: Resolution is not always possible

    I also believe in the power of the mind - I think I was able to get through my worst moments by sheer personal will and the belief in myself that I will push past.

    My point being to this initial post however, was not to say don't have hope, but rather an observation that so many posters on here have been told that their situation will clear up "soon" only to find out that they have been given false hope based on the "usual" guidelines (for lack of a better word) to establish a time-frame to feel like their old selves again. Ha, I was told that I would get better in 4-6 weeks.

    CL, in your instance, you were very lucky to finally be able to see someone very knowledgeable, who provided accurate testing and took the time to explain to you in detail the hows and whys of your condition - so many are not as fortunate or do not have the opportunity to invest time or money to pursue a deeper investigation, so they go back to relying perhaps a medical professional who isn't well versed in inner ear conditions to provide more detailed information.

    By the way CL, how are you? I hope things are well your way! We still have snow and ice here, but at least the sun is shining.

    Hugs! xo

     
    Old 03-09-2005, 11:51 AM   #11
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    Re: Resolution is not always possible

    Just out of curiosity, what (if you have gotten one at all) is your diagnosis Wow?

    A

     
    Old 03-09-2005, 12:25 PM   #12
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    Re: Resolution is not always possible

    WOW

    Agree completely that I and others here who have seen LL have been lucky. I was lucky to get it free on the NHS. I msu say though that I perservered hugely to get it and did my research. I had countless knockbacks before I got what I wanted. I know in the USA and elsewhere things arent as easy money wise without the free health service.

    But what I mean is...

    Many who dont have a diagnosis - cant get better - as they dont know what to do - but this does nt mean recovery is not likely - as in, if they got the help, they probably would be ok, given time... It is not so much therefore that inner ear disorders are "incurable" but instead, I cannot emphasise enough the importance of getting the RIGHT diagnosis and the RIGHT help - but I know for some, this is not easy.

    I agree with you that 4-6 weeks is wrong - at least for about 40% who contract labyrinthitis - as you know Im trying v much via various means to quash this unfounded and grossly false information.

    But...

    although for many it takes months and years rather than weeks, we can still get there.

    And again, it comes back to getting the right help. As LL's team have been v realistic with me and have said "this can take ages" yet have also told me most do get there...in the end.

    xxx

    PS) Thx for asking how I am - been working about 3 days a week and quite busy - soz for not being in touch - will do - promise. Am doing ok - up and down but positive thing is no increase in symptoms during period for last 2 mths - big step for me - got VRT in 2 weeks time...

    How u doing?


    xxx

    Last edited by crazylabyrinth; 03-09-2005 at 12:36 PM.

     
    Old 03-09-2005, 12:56 PM   #13
    Wowwwweeee
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    Hi Drea,

    I have been told by three different specialists that I have MAV. Prior to that, I have also been told that I have Labs, VN, and BPV. But since my symptoms can be alleviated completely by taking a migraine medication (Amitryptyline), are worse the week before my menstrual cycle, and fluctuate in symptoms, my neuro is leaning towards MAV.

    Hey CL,

    I agree that making sure a correct diagnosis is reached is half the battle when dealing with inner ear disorders, but in speaking to more than a few specialists lately (on my quest again), I have been told by different people in different conversations that a full recovery is not always possible, even with the best treatment. Again, I think it depends on each situation and circumstance, and the person who is afflicted.

    That is GREAT news about your symptoms not increasing ifor two cycles! I am so happy for you! It's been a struggle for you, so it's nice to hear that things are even.

    You're so funny, you are always promising to keep in touch, but! It's never a problem with me as you know. I'm just glad to hear you're working and things are steady.

    I've been dealing with some depression, as you know from some of my duller posts, but managing. I am always trying.

    Hugs! xo

     
    Old 03-09-2005, 01:19 PM   #14
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    Re: Resolution is not always possible

    I agree - that nt all recover but most do so we must be positive!

    I knw I kp promising but it will happen! Theres no excuse but I seem to be constantly emailing in my spare time with my site. Hardly get time to do personal emails! Will do...

    Keep smiling - have you thought of more CBT for the depression? xxx

     
    Old 03-09-2005, 01:27 PM   #15
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    CL,

    I still think I am going to recover fully ONE of these days.....today it's easy to giggle about, but on other days.....as you know.....

    I do try my best to be positive, but some times it's really h-a-r-d.

    I have given some thought to CBT again, however I know what coping tools to use to not feel so all over the place with my emotions. Lately it's just be rough on me because my symptoms have been rough. I have good supports at home and with friends, so venting if I need to is not a problem, which is comforting.

    I may also visit my depression with my OB-GYN because I've noticed I am more intolerant and emotional closer to my cycle. This is new for me as I usually don't have this as any part of my period. I am hoping that if I can regulate my emotions from that aspect, that my depression will be less.

    I think on some level CL, I will be dealing with depression from simply having to deal with my woozy head. But it's the degree of depression that has me feeling frustrated and hopeless lately, and that's what I need to sort out.

    I also have some job stress going on, which I haven't needed to worry about in AGES, so it's been a very provoking few months for me.

    I just am a twirl of emotions lately.

    Again, no worries on emailing me! It's nice we can keep in touch through here and that we both know the other is okay. I always think of you! xo

     
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