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Old 10-28-2011, 08:03 AM   #1
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Possible Vestibular Neuritis- need some kind of hope

I am a 41 year old female. I am only a month into my problem which my doc thinks may be vestibular neuritis as my hearing is good. I got this after being sick with bronchitis/laryngitis for two weeks.

I was had about two days where I had some good moments and then had VNG (ENG) testing 2 days ago and have since been awful. It made every symptom worse and I can't feel better at all. Very traumatic test! I hope this is not permanent regression.

I do not have results of the testing yet but I can tell you that my caloric test was not the same for both my ears. Right ear was violent reaction, left ear was very mild.

I meet with my doc (an ENT who specializes in balance disorders) next Thursday to discuss the results of the test and come up with a plan for VRT. And I did have a Dix-Hallpike and that showed it is not BPPV.

So many people are taking about MAV and other things that I find myself doubting the VN diagnosis and just find that my anxiety keeps getting higher. It's hard to cope - I've got 2 kids. Some moments I feel like I'll never get better. Actually a lot of times I feel that way. And I don't want to waste time with VRT if it is actually MAV.

My symptoms - one bad vertigo attack followed by a week of getting increasing dizzier and off balance feelings, motion sensitivity, walking is hard - feel lots of motion, moving head around - makes me feel like I am moving and dizzy, spinning feeling in head, head feels heavy and lots of panic. Looking down is awful. Looking at moving things is not good. I have no appetite. Seems to all feel worse the more I do but I can get myself feeling worse by reading awful things online. And all now so much worse since VNG test.

I try to do small things around the house - I remember reading that I must keep somewhat active. But I had to take time off from my job as a music teacher - that was impossible to do. I tried for a few weeks but it made me so anxious to have to try to appear normal. People noticed I was looking very robotic - keeping my head still! And I felt awful!

Cars are okay as long as we keep moving. And sleeping is okay once I go to sleep. Waking up and starting to move around - it all starts again!

Any advice/help/hope you can give me will be appreciated. It is so hard to cope and stop crying. If I do manage to get better, I promise to post an update of hope for others.

 
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Old 10-28-2011, 06:26 PM   #2
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Re: Possible Vestibular Neuritis- need some kind of hope

So sorry to hear about your situation. I don't know much about vestibular disorders myself as I am new to this too but I promise you there is hope!! It's so hard not to just break down but keeping a positive mind will help you so much in the long run no matter what this thing is. I know how you feel with the anxiety taking over and trying to just appear normal, it takes a lot of strength. Focus all your anxiety into finding out what this is and fighting it and just keep telling yourself you will get better because you will! It may not seem like it at the moment but you will get rid of this thing and look forward to your appointment on Thursday with the ENT. Sounds like you have people on your side looking into all of this for you which is good!

I'm sorry I don't have more medical information for you, I just really wanted to reply and let you know that others are going through something similar and that I'm here for support. I have found myself really down and negative because of this all but I think sometimes life throws us things to test our strength and we can choose how to react and fight back.

The one medical thing I know is that if it is MAV VRT will make you feel worse, not better so I would give it a try and see how you feel. Since you got this after bronchitis and it is only really affecting one ear it doesn't sound like MAV to me, but again I know very little about all this. I'm sure one of the more medically educated people on this board will post and shed some insight into what you are dealing with.

All the best, hope you are feeling a little bit better today.
-Alexis

 
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Old 10-28-2011, 07:08 PM   #3
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Re: Possible Vestibular Neuritis- need some kind of hope

Hi Opus and Alexis,

Most times on these boards, I'm a lurker, but Opus, your post really touched me. You sound just like I did when my symptoms first started. I hope my story gives you some hope.

I am 31 and was initially diagnosed with VN. I say "initially" because I went to three ENTs, and two of the three believe it is VN. One believes it is early onset hydrops. Regardless of the diagnosis, my symptoms were just like yours. For me, it all started with a sudden vertigo attack in July 2011. The vertigo triggered a panic attack, and my life changed for the next three months. In those three months, I experienced a constant state of dizziness and anxiety. I had ear fullness in my left ear as well. I was referred to VRT and completed three weeks at three times per week. The VRT helped me with the dizziness and I saw improvement with my balance.

The three main factors that helped me get to where I am today are:
1. A prescription of Methylprednisone. This is an anti-inflammatory that cleared up my ear fullness within two days of finishing the pack.
2. VRT
3. Counseling to help me with the anxiety

In my opinion, treating the anxiety is just as, if not more, important than treating the inner ear disorder. My anxiety has gone from a 10 (when I experienced the vertigo/panic) to a 7 (while spending two months feeling dizzy) to a 2 (which is in the typical range for any person).

So here is where I am now...I feel close to how I was before all of this happened. Those of us who have experienced an inner ear disorder knows what a nightmare it can be. For a couple of months, I felt that my life was over. I felt that I would never be back to "normal." I lost hope and began having depressive thoughts. However, I am telling you that IT DOES GET BETTER. We are all on different healing timelines, but the good news is that having an inner ear disorder is not a death sentence. I have made lifestyle modifications, which is good for anyone, regardless if they have an inner ear disorder or not. I do follow a low-sodium diet. I cut out caffeinated beverages. I have also cut out alcohol (but plan on having a glass of wine when I feel like it).

It is difficult to see the light at the end of the tunnel, but it is there waiting for you. I try to see the positive in everything and although this is definitely something that is difficult to see the positive in, I feel that the good things that came out of this for me are:
1. My faith in God is stronger than ever.
2. I am more aware of my mental health needs (I now know how to manage stress way better than before).
3. I lost 25 lbs from making the lifestyle modifications listed above.
4. I have a new appreciation for my life. I am no longer existing, but now I am living.

Finally, I want to say that I understand how you feel about work because I, too, am a teacher. I am fortunate that my acute symptoms took place in the few weeks prior to the school year starting. I did have a challenging first quarter - I had to teach sitting down on days that I was dizzy, I used up several sick days to go to all of the appointments, and yes, I even had to change my lesson plans at the last minute if I was having a bad symptom day (educational movies are a lifesaver). When I couldn't grade papers because my eyes were strained and fatigued, I had to seek out a support system amongst the teachers I work with. It is amazing how understanding your colleagues can be when they know what is going on with you. Because as you will see, we may look fine on the outside, but what is going on on the inside can be devastating.

I hope my story can be encouraging. I know how lucky I am to feel this good after "only" a few months. Those few months sure felt like a lifetime, but it isn't. There is hope - never give up.

 
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Old 10-29-2011, 05:32 PM   #4
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Re: Possible Vestibular Neuritis- need some kind of hope

If you have VN, then the ENG will show damage. However, it is also possible for an MAV patient to show damage. So here is something to think about:

VRT will greatly help VN after a few weeks or months, but generally makes MAV worse. A bad reaction to VRT is practically diagnostic of MAV (according to an expert I know).

I believe there is some doubt to the VN diagnosis because your symptoms got progressively worse over 1 week instead of better. VN is supposed to peak for a few days, then get better over 1 or more weeks. If you have any history of migraine, the MAV is a more likely diagnosis.

Last edited by bindar; 10-29-2011 at 05:37 PM.

 
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Old 10-29-2011, 07:13 PM   #5
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Re: Possible Vestibular Neuritis- need some kind of hope

This is directed to Bindar. You seem very knowledgeable about inner ear disorders and I can tell you have done much research on the topic. I am curious what your opinion is about my case. I hope to hear back from you.

This is my timeline:

* End of June 2011 - noticed fullness in left ear
* July 21, 2011 - first sudden episode of vertigo (lasting approximately 10 minutes) with signs of panic
* July 31, 2011 - second sudden episode of vertigo (lasting approximately 10 minutes) with signs of panic
* First week in August 2011 - went to two general practitioners, who prescribed me with an anti-anxiety med and dismissed my complains of having fullness in my left ear; went to ER and the doctor suspected an inner ear disorder and referred me to an ENT
* Second week in August 2011 - ENT prescribed me Methylprednisode (6-day pack) for inflammation to inner ear and IT WORKED. A few days after ending the medication, the fullness in my ear went away for the first time in two months.
* Third week in August 2011 - all ear symptoms have subsided; however, constant dizziness and anxiety continued; referred to cognitive behavioral therapy and vestibular rehabilitation therapy by my ENT
* End of August 2011 until Now - CBT (1 time a week) seems to be helping with the anxiety that comes with the constant dizziness; VRT (3 times a week) seems promising but I have not personally experienced improvement with dizziness yet (update: VRT has ended and my dizziness has significantly improved...whether that was because of VRT or because of time, I am not sure)

Symptoms I have now or had in the past include:
* two episodes of sudden onset vertigo
* constant dizziness
* eye fatigue
* eye strain
* difficulty focusing eyes
* difficulty with high stimuli areas (grocery stores, book stores, malls)
* anxiety
* mild depression
* overall fatigue
* brain fog
* headache
* neck pain

Tests I have had and their results include:
* 4 audiograms during symptomatic and asymptomatic periods - all were within normal range
* MRI - no abnormalities noted
* VNG - 5% deficit in left ear compared to right but was told that results are considered normal
* ECoG - SP/AP ratio in right ear is 0.38 and in left ear is 0.42. I was told this is indicative of early onset hydrops; however, I am skeptical of results due to who administered and interpreted the test and how the test environment was

Other info:
* Stress induced migraine diagnosis in 2005

Thoughts? Thanks!

 
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Old 10-30-2011, 05:30 PM   #6
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Re: Possible Vestibular Neuritis- need some kind of hope

Your symptoms sound exactly like MAV. Given your history of migraine, MAV is the most likely possibility.

VN patients do not have intermittent 10 minute vertigo spells. I think there is no way you have VN, but I am not a doctor so I cant make the judgement call.

 
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Old 10-31-2011, 07:09 AM   #7
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Re: Possible Vestibular Neuritis- need some kind of hope

Idylliclife - how are you doing? Do you think VRT helped your symptoms? I still don't know more about myself yet - going to doc on Thurs. for test results.

 
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Old 10-31-2011, 08:08 PM   #8
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Re: Possible Vestibular Neuritis- need some kind of hope

Hi Opus,

I know that I felt better after completing three weeks of VRT; however, I am not sure if it was the VRT or if it was just time that helped me with my symptoms. I say it definitely doesn't hurt to try it if you can get a referral. I am fortunate that I also had good insurance that paid for it. I have heard stories from others who had to stop VRT because of their insurance. It is quite expensive.

I am feeling really good, but I do have my rough days. I want to make it a point to say that my rough days are very few and far between! For example, today was a dizzy day, but I attribute that to the fact that I made a choice to watch Desperate Housewives and eat pumpkin cheesecake at 9:00 last night. Oops! Also, I do believe that my rough days are a direct result of my anxiety. I continue to see a counselor for anxiety that we believe was triggered by the inner ear disorder. Even though the symptoms related to my inner ear disorder have all but went away, I do have some residual anxiety that on most days is controlled but on the occasional day presents with some physical symptoms (for me it is throat clicking).

As I said in my last post, do not give up hope! I hope you get some answers on Thursday. I would love to hear about that if you feel like posting on here. What tests did you have done again? I suggest you be prepared to ask lots of questions if you have any when you review the results with the doctor. I know my personal experience with some tests made me doubt the validity of the results - administrator bias was a huge concern for me, as well as whether or not proper protocols were followed.

Best wishes and keep up the dialogue - the support I received from message boards like these is what kept me positive throughout my whole experience.

 
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Old 11-01-2011, 12:33 PM   #9
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Re: Possible Vestibular Neuritis- need some kind of hope

I am glad to hear that you are doing a little better. Since your VNG showed you only have a 5% loss in the left ear, there is no way you have VN. Anything below a 20% deficit is considered normal. So a 5% loss is better than normal.

Its interesting that you attribute your increase in dizziness to what you ate last night. That sounds identical to an MAV patient to me.... Cheesecake is loaded with migraine triggers.

 
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Old 11-01-2011, 03:53 PM   #10
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Re: Possible Vestibular Neuritis- need some kind of hope

I will hopefully get a diagnosis on Thurs. or at least know more info. But just in case, I have started following the migraine diet and avoiding the foods considered triggers for so many.
I would guess that it would take awhile to notice results on this diet, if at all.
But if it is MAV, it seems that this would be the first step anyway.
I'll post more after my doc visit Thurs.

 
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Old 11-01-2011, 06:21 PM   #11
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Re: Possible Vestibular Neuritis- need some kind of hope

Bindar,

I never put the two together (cheesecake and increased dizziness). I do know that the typical "red wine" and "dark chocolate" triggers migraines in me. My dizziness increased today, as well as my anxiety. I am trying to pinpoint the cause but cannot put my finger on it. We did have our first snowfall this past weekend and today was my first day driving. I came to realize that driving in snow is visually exhausting for me.

Do you know of a good website that explains MAV in more detail? How about a website that describes potential migraine triggers?

Thanks for your help, particularly with informing me about VNG testing and what constitutes normal or abnormal loss.

 
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Old 11-02-2011, 01:35 PM   #12
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Re: Possible Vestibular Neuritis- need some kind of hope

I must have misunderstood your post. I am glad to help in any way I can. I am glad to hear you have started the migraine prevention diet, it usually takes 1-2 months before a person will notice a difference. But the majority of people require a preventative before they notice any improvement.

There is a great MAV forum run by a guy from Australian. But we are not allowed to mention the name of other websites here. But you can find it by searching on google.

 
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Old 11-02-2011, 02:08 PM   #13
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Re: Possible Vestibular Neuritis- need some kind of hope

I must have misunderstood your post. I am glad to help in any way I can. I am glad to hear you have started the migraine prevention diet, it usually takes 1-2 months before a person will notice a difference. But the majority of people require a preventative before they notice any improvement.

There is a great MAV forum run by a guy from Australian. But we are not allowed to mention the name of other websites here. But you can find it by searching on google.

 
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Old 11-03-2011, 01:07 PM   #14
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Re: Possible Vestibular Neuritis (now diagnosed as MAV) - need some kind of hope

Well, my VNG was totally normal. So, the doc thinks it is MAV.
I consulted with a neurologist who wanted me to take valium and topomax. Before I do that though, a friend set me up with a neurotologist for next Tues. morning. I hear this is the kind of doc that is best to see for this.
Since that is soon, I will wait and get another opinion and then start treatment. I did not care for the neurologist - she also said the migraine diet didn't really work for anyone and to eat whatever I want to . I disagree with that. I don't see results yet, but I've only been on it for 4 days.
As far as my personal migraine history - I do have a history of headaches but never thought they were migraines. I did have an ocular migraine however about a year and a half ago and have occasionally seen flashes of light.
I also have a history of lyme disease but my lyme doc does not feel this is related. However, he did mention that trying a course of antibiotics couldn't hurt.
What meds do people take for MAV that work and don't have many side effects?

 
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Old 11-04-2011, 06:54 PM   #15
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Re: Possible Vestibular Neuritis- need some kind of hope

That's great your VNG was normal! I am happy you have an answer. I'm sure the journey with this new diagnosis is going to be a learning process. I don't know much about MAV and the meds that go with it. I hope that the meds do its job and you begin feeling better. Keep us posted!

 
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