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  • Vestibular Neuritis... It Gets Better...

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    Old 11-13-2013, 08:44 AM   #1
    donnaisdizzy
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    Vestibular Neuritis... It Gets Better...

    I know why you're here...You are on these boards hoping and praying to be released from the nightmare that is Vestibular Neuritis. I explained why I spent so much time on these boards to my husband this way: It's like we've been thrown in prison for a crime we didn't commit and we need to spend every, single, waking moment looking for a way to escape--some miracle answer that will relieve us from these horrible symptoms. We've tried just about everything and we've done what our doctors have told us, but the symptoms persist...

    I am here to tell you that there is hope. I was diagnosed with VN in April 2013. I was told that the condition would only last "a few weeks," and then I'd be back to normal. That absolutely did not happen. The symptoms hung on and on and on for months--I'm still not completely healed--and in the process, I have had to adjust my entire life. But today, as I type this, I am not nearly as sick and dizzy and nauseous as I once was. I can carry on conversations with people and not feel like I'm going to spin out of control! I can sit in a meeting at work and focus.

    I seem to have had all of the symptoms: Nausea (really felt like I was on a boat for about 2-3 months; ringing in the ears (which they say doesn't happen with VN, but I am proof that it can); popping in the ears; ear fullness; tingly scalp; creepy crawly sensations on the face; numbness in the fingers (due to horrific anxiety); severe imbalance; really horrible neck pain; fullness in the cheeks just under the eye and near the nose; difficulty concentrating; awful dizziness; and the worst for me: real difficulty in driving. I pretty much had to stop driving all but the very shortest of distances. This has been so depressing and hard as a very busy mom who also works outside the home.

    I would wake up every day and not be able to believe I was still in this horrible situation. I would start moving around a little and sure enough, the dizziness and nausea and imbalance would follow. And we have the one disorder where they tell us that medication actually hurts us in the long run! Such a Catch-22. I was fearful of taking Ativan or Valium or anything addictive, even though it would certainly help with the awful anxiety and the dizziness. It was a nightmare. I still can't believe it has happened to me.

    But...The brain really does--slowly--start to figure things out. I liken this to a marathon, and each day is only one small step of recovery--or more accurately, each week is like one step on the journey. It's that slow. Or imagine trying to get through a 24-hour day, and each week of recovery is like just one second ticking on the clock. It's just really, really, really slow. More painfully slow than any of us can imagine or bear, but we are progressing.

    I also decided in July to take an SSRI. It is non-habit forming and I read one study that suggested that SSRIs actually help with ear function. I needed to get something to reduce the anxiety. I was having panic attacks just about every day. And also, having to accept that my life has been so disruptive has been indeed depressing, so the SSRI I think is helping with that.

    Today, the ear popping and fullness has stopped. I still have ringing. I am not nearly as nauseous or dizzy, but I do have my days where I can feel it profoundly--these are fewer and farther between. Relaspes happen, which is beyond depressing, but they are short lived. I can drive a little further--still not full time, but getting a little better with lessened anxiety. Bottom line is that it's just not as bad as it was. I think that's how we have to measure this. We have to say, "Did I feel better or worse last summer?" Not, "Did I feel better yesterday?" The improvement is so slow it's almost immeasurable, but it's there.

    I would just encourage anyone out there to keep the faith and take care of yourself. A good friend of mine that I found through these boards reminded me of that. It's going to be okay. We're just in a tough spot right now, but we're not alone, and it does get better. Hang in there, friends!!

     
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    Old 11-13-2013, 09:08 AM   #2
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    Re: Vestibular Neuritis...It Gets Better...

    DONNAISDIZZY,Thankyou so much for posting!!!I know we all can agree by now most of us know what to expect with dealing with this,but getting updates feeds our encouragement and raises are spirits.I know that all of us can totally relate to one another and this has literally saved my sanity..I have permanent 24-7 tinnitus from the vn,but u know what I can deal with that,does it get annoying at night sure but more then anything I just want me and and us all to get better to get back on with our lives,and enjoy live againThis is by far the hardest thing I have ever had to go through,I turned 30 and june and just when I was in the prime of my life or so it seemed then boom this happened.But more than anything I just wanted to stress that positive reinforcement helps as with a positive outlook.Some days are very crappy,some days really good im going through a blip now but Im trying to stay positive ..I think many of u will understand how lonely and isolating this condition can be and my problem is I get tired of being limited as to what I can do then I try to do what I normally would and it bites me back because I either had huge anxiety doing it or just pretended to enjoy it and be happy.I would say Im only doing 50%of what I did when I was normal before I got inner ear virus;/ but chin up everyone xoxo

     
    Old 11-13-2013, 09:33 AM   #3
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    Re: Vestibular Neuritis...It Gets Better...

    also to everyone out there who has ringing in the ear,or ears,many doctors will check if you have hearing loss to rule out meneirs disease and just regular hearing loss.I was told by a doctor that labs and or vn couldnt last this long and that I had Meneirs disease Wrong!!! I had gotten my hearing tested many times since i came down with vn in feb of this year,and my hearing is 100% no hearing loss.Point is you can get tinnitus from having inner ear virus.I had researched and researched sooo much and basically ringing is simply a false signal the brain gives off.The virus disrupts signals and the brain confuses false signals again as sound,which results in tinnitus...

     
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    Old 11-13-2013, 10:08 AM   #4
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    Re: Vestibular Neuritis...It Gets Better...

    Quote:
    Originally Posted by donnaisdizzy View Post
    I know why you're here...You are on these boards hoping and praying to be released from the nightmare that is Vestibular Neuritis. I explained why I spent so much time on these boards to my husband this way: It's like we've been thrown in prison for a crime we didn't commit and we need to spend every, single, waking moment looking for a way to escape--some miracle answer that will relieve us from these horrible symptoms. We've tried just about everything and we've done what our doctors have told us, but the symptoms persist...

    I am here to tell you that there is hope. I was diagnosed with VN in April 2013. I was told that the condition would only last "a few weeks," and then I'd be back to normal. That absolutely did not happen. The symptoms hung on and on and on for months--I'm still not completely healed--and in the process, I have had to adjust my entire life. But today, as I type this, I am not nearly as sick and dizzy and nauseous as I once was. I can carry on conversations with people and not feel like I'm going to spin out of control! I can sit in a meeting at work and focus.

    I seem to have had all of the symptoms: Nausea (really felt like I was on a boat for about 2-3 months; ringing in the ears (which they say doesn't happen with VN, but I am proof that it can); popping in the ears; ear fullness; tingly scalp; creepy crawly sensations on the face; numbness in the fingers (due to horrific anxiety); severe imbalance; really horrible neck pain; fullness in the cheeks just under the eye and near the nose; difficulty concentrating; awful dizziness; and the worst for me: real difficulty in driving. I pretty much had to stop driving all but the very shortest of distances. This has been so depressing and hard as a very busy mom who also works outside the home.

    I would wake up every day and not be able to believe I was still in this horrible situation. I would start moving around a little and sure enough, the dizziness and nausea and imbalance would follow. And we have the one disorder where they tell us that medication actually hurts us in the long run! Such a Catch-22. I was fearful of taking Ativan or Valium or anything addictive, even though it would certainly help with the awful anxiety and the dizziness. It was a nightmare. I still can't believe it has happened to me.

    But...The brain really does--slowly--start to figure things out. I liken this to a marathon, and each day is only one small step of recovery--or more accurately, each week is like one step on the journey. It's that slow. Or imagine trying to get through a 24-hour day, and each week of recovery is like just one second ticking on the clock. It's just really, really, really slow. More painfully slow than any of us can imagine or bear, but we are progressing.

    I also decided in July to take an SSRI. It is non-habit forming and I read one study that suggested that SSRIs actually help with ear function. I needed to get something to reduce the anxiety. I was having panic attacks just about every day. And also, having to accept that my life has been so disruptive has been indeed depressing, so the SSRI I think is helping with that.

    Today, the ear popping and fullness has stopped. I still have ringing. I am not nearly as nauseous or dizzy, but I do have my days where I can feel it profoundly--these are fewer and farther between. Relaspes happen, which is beyond depressing, but they are short lived. I can drive a little further--still not full time, but getting a little better with lessened anxiety. Bottom line is that it's just not as bad as it was. I think that's how we have to measure this. We have to say, "Did I feel better or worse last summer?" Not, "Did I feel better yesterday?" The improvement is so slow it's almost immeasurable, but it's there.

    I would just encourage anyone out there to keep the faith and take care of yourself. A good friend of mine that I found through these boards reminded me of that. It's going to be okay. We're just in a tough spot right now, but we're not alone, and it does get better. Hang in there, friends!!
    Thank you for your post! I have been having trouble since March 2012 and felt I was getting better over the summer. However, in September this year, 2013, I felt like I was going to pass out in our grocery store. I have felt this way about 3-4 times since then. It's almost like you're in a bad dream and you can't wake up. Did you ever experience this? I also have the dreamy feeling several times throughout the day. Not as bad as the grocery store event. I do feel better, not having bad moments as much as I did last year. But now I have severe anxiety keeping me inside. I am raising my little 22-month old girl while my husband is at work. I think since I'm inside with her, it's more difficult to compensate. Because I am so nervous about going outside and driving since I feel horrible. The stores are making me dizzy again. I have no idea what caused this decompensation. I just need to get through it. Can you please tell me what the SSRI is that you are on? Since it's non-habit forming, I would like to try. I see my doctor again soon.
    Thank you so much!
    Nicole

     
    Old 11-13-2013, 10:14 AM   #5
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    Re: Vestibular Neuritis...It Gets Better...

    what is a SSRI?BTW

     
    Old 11-13-2013, 12:16 PM   #6
    donnaisdizzy
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    Re: Vestibular Neuritis...It Gets Better...

    These are a class of anti-depressants. I read where they help with brain function somehow and of course the decrease the awful anxiety. I was very reluctant to try this option, but I was at the end of my rope with anxiety. They just take the edge off and make it easier to cope with this whole thing.

    Last edited by Administrator; 12-09-2013 at 02:30 PM.

     
    Old 11-13-2013, 12:30 PM   #7
    donnaisdizzy
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    Re: Vestibular Neuritis...It Gets Better...

    Quote:
    Originally Posted by biteneck View Post
    Thank you for your post! I have been having trouble since March 2012 and felt I was getting better over the summer. However, in September this year, 2013, I felt like I was going to pass out in our grocery store. I have felt this way about 3-4 times since then. It's almost like you're in a bad dream and you can't wake up. Did you ever experience this? I also have the dreamy feeling several times throughout the day. Not as bad as the grocery store event. I do feel better, not having bad moments as much as I did last year. But now I have severe anxiety keeping me inside. I am raising my little 22-month old girl while my husband is at work. I think since I'm inside with her, it's more difficult to compensate. Because I am so nervous about going outside and driving since I feel horrible. The stores are making me dizzy again. I have no idea what caused this decompensation. I just need to get through it. Can you please tell me what the SSRI is that you are on? Since it's non-habit forming, I would like to try. I see my doctor again soon.
    Thank you so much!
    Nicole
    I know how it feels to think you're on the road to recovery only to have a relapse! There seems to be no rhyme or reason to it! I actually think that for women, hormones may play a part??? I don't know... But I was really desperate back in July and needed to be able to function before school started, so I took (and still take) Zoloft to cope with the anxiety. It was out of control...rapid heart beat, panic, the works! And it would really occur most when I would try to drive. I would be okay until I got to a stop light (no longer moving), and my brain hadn't figured things out quickly enough. So, I'd panic...horrible panic! It was awful. I still get the slight sensations at stop signs, but I don't panic about them anymore. It's so hard to keep going, but that's just what we have to do. My goal each day was to get in the car and drive just down the street to the grocery store and buy whatever we needed for dinner. That was a major victory! I would hang onto the shopping cart, and curse long lines because I was no longer moving and then the panic would set in. But I think, much like VRT, just doing our daily activities is therapy. So, my therapy was going to the store for 10-15 minutes. Yes, I have had the dreamy feeling or just like things are almost unreal. Hard to explain, but I think you know what I mean! Also, I've experience true vertigo, where some things appear to be moving in another dimension! Crazy! Thank heavens I haven't had that in awhile, but that's my one huge fear--that I will have one of those vertigo moments while I'm driving! So, I pretty much stay in the right lane on surface streets. I haven't driven on the freeway since April--too fast and too much going on! And if you knew me, you'd know how hard this is--I actually really love to drive. I had just taken my two kids on a road trip right beforet this happened. So, it's a total bummer on so many levels. But again, the Zoloft has helped me cope significantly. I'm not as depressed about this and the anxiety has pretty much been eliminated. Plus, I do think it's helping my ears function a bit better--I don't know for sure... Anyway, I totally feel your pain but I also know you will get better!

     
    Old 11-13-2013, 02:20 PM   #8
    Bren819
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    Re: Vestibular Neuritis...It Gets Better...

    I gotta be honest I think hormones def play a part in bad days because of fluid fluctuations ,mine is usually pms time (sorry guys)but also I'm not sure that taking Zoloft is a good idea if u want to get better ,it prevents and slows down the brain from compensating anything that calms u down is usually only a temporary fix

     
    Old 11-13-2013, 04:56 PM   #9
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    Re: Vestibular Neuritis...It Gets Better...

    Quote:
    Originally Posted by donnaisdizzy View Post
    I know how it feels to think you're on the road to recovery only to have a relapse! There seems to be no rhyme or reason to it! I actually think that for women, hormones may play a part??? I don't know... But I was really desperate back in July and needed to be able to function before school started, so I took (and still take) Zoloft to cope with the anxiety. It was out of control...rapid heart beat, panic, the works! And it would really occur most when I would try to drive. I would be okay until I got to a stop light (no longer moving), and my brain hadn't figured things out quickly enough. So, I'd panic...horrible panic! It was awful. I still get the slight sensations at stop signs, but I don't panic about them anymore. It's so hard to keep going, but that's just what we have to do. My goal each day was to get in the car and drive just down the street to the grocery store and buy whatever we needed for dinner. That was a major victory! I would hang onto the shopping cart, and curse long lines because I was no longer moving and then the panic would set in. But I think, much like VRT, just doing our daily activities is therapy. So, my therapy was going to the store for 10-15 minutes. Yes, I have had the dreamy feeling or just like things are almost unreal. Hard to explain, but I think you know what I mean! Also, I've experience true vertigo, where some things appear to be moving in another dimension! Crazy! Thank heavens I haven't had that in awhile, but that's my one huge fear--that I will have one of those vertigo moments while I'm driving! So, I pretty much stay in the right lane on surface streets. I haven't driven on the freeway since April--too fast and too much going on! And if you knew me, you'd know how hard this is--I actually really love to drive. I had just taken my two kids on a road trip right beforet this happened. So, it's a total bummer on so many levels. But again, the Zoloft has helped me cope significantly. I'm not as depressed about this and the anxiety has pretty much been eliminated. Plus, I do think it's helping my ears function a bit better--I don't know for sure... Anyway, I totally feel your pain but I also know you will get better!
    I completely understand about the driving thing. I love driving and wish I could feel good to do it again. I had just taken my mom to Splash Lagoon on a mini roadtrip in February 2012, just one month before getting this horrible thing. Thank you so much for getting back to me. I wish you a 100% recovery. Keep in touch.

     
    Old 11-13-2013, 05:06 PM   #10
    donnaisdizzy
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    Re: Vestibular Neuritis...It Gets Better...

    I don't know...I did read a study that said the opposite. First, that Zoloft did not interfere with compensation, and second, that it really alleviates anxiety in VN patients. I am getting better and I'm not anxious (which is a vicious cycle--you're anxious because you're dizzy, and your anxiety causes dizziness)! So, it's a solution for me at this time.

    I hope this helps! There are no easy answers, I know...

    Last edited by Administrator; 12-09-2013 at 02:31 PM.

     
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    Old 11-13-2013, 05:40 PM   #11
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    Re: Vestibular Neuritis...It Gets Better...

    I think I might try the SSRI if the doctor will do it. I need something to help me. It's been 20 months. I know of a girl who was affected for four years! She's better now. She said that exercising seemed to help her the most. I just can't stand that dreamy feeling. It's creepy and when I was in Giant Eagle, our grocery store, I thought I was dying or going to pass out. Everything looked and felt funny in my head. I think it might have been very severe lightheadedness but I never felt that bad before. I thought the worst was over from last year. I guess it seems that the symptoms fluctuate and can change over time as our brains are trying to adapt. I used to be feeling much better in stores and was able to shop but now, like I said the grocery store made me feel horrible, Walmart makes me feel bad too. I just want to feel normal again and if the SSRI will help to get there, then I'm willing to try it. I need the anxiety to go away or lessen. Thank you again for your input. If you have any more in the future, we'd all appreciate it!
    Thanks again!!
    Nicole

    Last edited by Administrator; 11-13-2013 at 09:32 PM.

     
    Old 11-19-2013, 04:07 PM   #12
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    Re: Vestibular Neuritis... It Gets Better...

    It's gotten better for me too. I'm on my 13th month. I've only recently realized how long this thing may take to recover from, but it will, some day, be resolved. However, it is not a straight trajectory or cut-and-dry. There is permanent damage to that nerve that cannot repair itself and the brain, and the nervous system, has to make up for it.
    Many symptoms have either completely gone away or are very subtle. No fullness of ears, no fierce head aches (once in a big while), no rocking sensation on a boat, except when I've been very, very tired. I can walk a lot more easily, and things are not tilting and swaying so much that I feel out of control; the hardest thing has been standing, especially while talking to some one (oh, it's hard), but really anytime and even that has become easier even in the last 2 weeks.
    I'm back to exercising and to most daily activities.
    So, yes, it does get better, thanks for the encouraging post. Here's to everyone getting better all the time.

     
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    Old 11-21-2013, 06:16 AM   #13
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    Re: Vestibular Neuritis... It Gets Better...

    so just to verify it is a good thing when the exercises dont stir us up anymore? most of the exercises I have been doing dont make me dizzy while doing them any more.and I want to challenge myself but not sure how to make them harder....

     
    Old 11-22-2013, 05:44 PM   #14
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    Re: Vestibular Neuritis... It Gets Better...

    So there are several vestibular exercises I was prescribed back in August. For the most part, they have lost their efficiency.
    Some are for gaze stabilization, and others are for proprioception and coping skills.

    One is walking while looking at large objects such as a car, house, etc, turning head from one side to the other.
    It was pretty much to get used to using my vision other than to rely on my feet. I had a habit of looking down where my feet are going.
    Pretty much am able to use my vision now, so don't use the exercise.

    Another is to stand hip length apart, parallel feet and then also one foot in front of the other and move from side to side. It was to feel the edge of my feet, telling my brain where they are. I used to do this 3-4 times a day.

    I don't really do this anymore. I think I tend to shift my weight if I'm standing somewhere which helps. Doing the exercise doesn't really do anything other than that. I usually try to use my vision rather than focus too much on where my feet are anyway. Standing in one place is not comfortable but I'll just stand there and move my feet.

    I also had a balance board I would stand on. Bend one way, or another, while looking around, using my vision. Flexible body. I can stand up there with nearly no trouble now. Actually haven't tried it for awhile.
    The exercise was primarily used because I had a very rigid body, afraid to be flexible. It would help to do this and also use my vision.

    Another was shaking my head while walking towards a 3-letter word on the wall. This is to stabilize the gaze as I get nystagmus, movement from my eyes which don't focus well.
    This, and another one is the only one I do on occasion, usually when my focusing gets bad. It does stir up symptoms, at first, but then it works later.
    It usually takes a lot longer to stir up the symptoms though

    I also play Solitaire on the computer and watch the cards as they move across the screen. I still do this one, on occasion. It does help a lot with gaze stabilization. My eyes focus much better later. The thing is, it takes a long time usually to stir up symptoms, depending on how bad it is. When it's really good, it takes a half hour or more before they are stirred up.

    I think the efficiency of the exercises are not necessarily dependent upon the symptoms being stirred up. It's like they were used for a couple months for coping skills as well.

     
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    Old 11-23-2013, 07:18 PM   #15
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    Re: Vestibular Neuritis... It Gets Better...

    Has anyone with Vestibular Neuritis recovered well from their vision issues?

    - When I read black text on a white page I get some purplish haze around it.
    - My ability to focus on some objects is less.
    - Also, It just feels like I am able to take in less information through my eyes in general (if that makes sense).

    Thank you all!

     
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