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Thread: Vertigo Anyone?

  1. #11
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    Hi James,
    Did u have a nerve conduction test done?

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    Quote Originally Posted by Realpro325 View Post
    Anne,
    Thank you for your kind words and caring response.
    My vertigo is relative to my body movement. The more I move the worse it gets.
    Valium seems to help but only when it gets so bad I can't focus on an object to help me slow it down with my mind.
    This get very tiring.
    James
    I'm SURE it gets very tiring. I don't know how you can function at all. I've never heard of this bad a case of vertigo and can only hope that someone on here can shed more light or at least offer some hope having been through something similar.
    Anne, dx'ed April 2011

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    Quote Originally Posted by Realpro325 View Post
    Mom,
    I have had many audiologist test me with all kinds of equipment including a clinical vestibular specialist and I have had a closed MRI that the ENT used to confirm the nerve damage. The tinnitus is just as bad as the spinning. I have three sounds the bell , the ocean. and the crickets.
    James
    James,

    You have had a lot to deal with for sure. I went totally deaf on just before I was DX and lost some hearing in the right ear. I have tinnitus very bad also and sometimes putting a soft ear plug in my worse brings the ringing down a little. I do hope you have the very best doc as it will make a lot of difference.

    Stay strong,

    Mary

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    mrtmeo,
    I did have nerve conductive test done along with full hearing test on each ear and set of nerves with each visit to the ENT during that time for a total of six or seven test to confirm the constant and permanent vertigo diagnosis. The doctor offered a surgery but I am already deaf and totally removing the connection is a 50/50 shot a helping me and he did not feel it would work and that the risk was to great during my current condition. Is there anything you think we are missing?
    Thank you for your interest and help,
    James

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    Quote Originally Posted by Realpro325 View Post
    mrtmeo,
    I did have nerve conductive test done along with full hearing test on each ear and set of nerves with each visit to the ENT during that time for a total of six or seven test to confirm the constant and permanent vertigo diagnosis. The doctor offered a surgery but I am already deaf and totally removing the connection is a 50/50 shot a helping me and he did not feel it would work and that the risk was to great during my current condition. Is there anything you think we are missing?
    Thank you for your interest and help,
    James
    Hi James,
    I am sorry, but I do not have any knowledge in the area's of cns damage from vasculitis, but want to learn.
    My mom had a nerve conduction test done for the nerves in her legs and they said there was permanent damage.

    This was while she was withdrawing off of Ativan.
    Once she was off and recovered from the benzodiazepine withdrawal, her feet didn't bother her anymore.
    Unfortuneatly, she went back to the drug and hid it and all her sx's came screaming back and she almost died.
    We are now, tapering very slowly using Valium.

    I have heard from others that if treatment is successful healing nerve damage can happen, but it takes a year or more.

  6. #16
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    Quote Originally Posted by mrtmeo View Post

    I have heard from others that if treatment is successful healing nerve damage can happen, but it takes a year or more.
    My ENT told me that the nerve damage in one ear from a severe ear infection was permanent, and at the that time, that ear was hearing much worse than the other, which had also been infected but had no nerve damage. That was 2.5 years before WG dx, and both ears incurred conductive hearing loss later on. But the hearing in the nerve damaged ear did improve over the years, while the hearing in the other ear went up and down and is now the worse of the two, having incurred the loss of the eardrum due to WG necrosis. So the nerve damaged ear is now my good ear, though it still needs a hearing aid, and the nerve damage is apparently still there, since there is still the constant tinnitus that is like a moderate hissing noise, which has been there since the infection. It is manageable, and the hearing aid helps cover it up; it is nothing like the tinnitus that James experiences. The bad ear also has some tinnitus that comes and goes and is more like a waterfall in the distance. My conclusion is that there could have been some healing of the nerve damage in the left ear, since the hearing has improved, but the tinnitus is still there, so it is hard to know, and the improvement could also be due to less inflammation and thus less conductive hearing loss. Even the bad, eroded ear, the right one, will occasionally have better hearing for a time, presumably as inflammation has decreased in that area or some blockage of matter in the middle ear, or earwax in the outer ear, has cleared up. As for the vertigo, that seems pretty random, and the ENT is vague about it, but I'm assuming it is mainly due to the eroded right ear drum and resulting issues, though it could also be related to the nerve damage in the left ear. But it just seems like it happens more when things have been done to the right ear, like a cleaning, or me messing around with it, or cold air, or whatever. My last vertigo was the day after Christmas; I woke up with it, and I had had a fair amount of caffeine, chocolate, and alcohol the day before.

    I should try the BPPV exercises someday, just to see, as they have been mentioned to me by several people.... googling it tells me that it is a temporary condition and not a constant vertigo like what James has.

    As for nerve damage being able to heal over time, I think I've heard that is true, and have observed it in myself in that my peripheral neuropathy has improved a lot. But it does seem to take quite a bit of time.
    Anne, dx'ed April 2011

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    Hi Anne and James,
    As I understand the vertigo type symptoms can be caused by the crystals in the ear canals and/or too much fluid in the ear canals.
    These crystals can migrate away from their normal position and this is why the exercises can help some people.
    Also, psych drugs very often cause tinnitus and my mom tried paxil once and she felt like she was in a wind tunnel.
    She had the same thing happen years ago when she tried buspar which is really an antipsychotic.
    I am glad she gets tinnitus with psych meds so that she doesn't take them.

    I sure hope and pray both of you get your nerve function back to normal.
    The human body is an amazing machine that can repair itself.
    My prayers are with you all suffering this
    Last edited by mrtmeo; 01-07-2015 at 08:25 AM.

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    I don't believe James' constant, severe vertigo could be caused by BPPV, from what I've read about it. If that was possible, I'm sure his docs would have thought of it, since it is pretty common knowledge. However, in my case, it could be a factor, though my ENT hasn't mentioned it... I think he assumes it is from the WG damage in my ears and I think he is probably right. But it could be both, and it certainly wouldn't hurt to try the exercises.

    I don't take any psych drugs, though I've taken mild ones in the past, and stopped them at least 2 years ago. I think tinnitus in various forms is quite common among WG patients due to the damage done to the ears and eustachian tubes, or to inflammation which is causing e-tube dysfunction. I can also well imagine that psych drugs and other meds could cause this problem.

    Thanks for your well wishes. My nerve problems are very minor compared to James' and some other Weggies, and I can live with them just fine. I rarely even think about them. I do hope that in his case, healing is possible, and in the meantime, that his docs can find some solutions to relieve the extreme discomfort he goes through constantly.
    Anne, dx'ed April 2011

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    Hi James and welcome to the best group of people ever. I'm wishing you all the best for better health, as it seems that you have had a lot to deal with. Thanks for sharing your story with us. Looking forward to hearing more from you.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  10. #20
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    Hi James,
    You mention that you have UC.
    Have you ever tried 6mp, Cellcept or Imuran?

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