Does this sound like Vestibular Neuritis?

Posted , 31 users are following.

Hello, this is my first time posting.  I have a serious health issue, but the doctors haven't been able to pinpoint what it is.  Basically, I've had six weeks of dizziness and unsteadiness.  It sounds like Vestibular Neuritis, but please let me know what you think.

On June 9th I got some kind of stomach flu or food poisoning.  I had severe vomiting and diarrhea.  Other than a canker sore under my toungue, I was starting to feel better.  I was exercising again and working again.

While walking across a bridge in the park on June 14th, I suddenly got a fear of heights.  I felt the same sensation the next day while sitting at a traffic light, that happens to be on top of an overpass.  I felt panicky.

As the week went on, I was getting panicky in the car every time I had to stop at a light.  I had to look down at the sterring wheel because the cars criss-crossing in front of me was making me disoriented.

Then I began to get dizzy spells throughout the day, plus I felt a permanent unsteadyness 24 hours a day.  A lot of times I had to concentrate hard to walk.  My eyes were not going where I wanted them to go.  Work really brought on the systems.  I started missing days.  I also had to have people drive me around to places. One time I had heart palpatations when there were a lot of people around me.  Eventually I asked for a leave of absense.

On the 26th, a dizzy spell got so bad I had to go to the hospital.  It was mainly disorientation, not like the room was spinning. I was still able to walk around the hopital, but very slowly, and had to concentrate hard to do it.  MRI showed no tumors or stroke.  They said it was a middle ear issue, perscribe some medicine and sent me on my way.

So far I've seen one ENT, but other appts are coming for nearologist and another ENT.  My hearing test was perfect.  The ENG/caloric test came out normal, which surprised me.  He suggested I might have Mal de Debarquement Syndrome.

I became became imprisoned in my home, and I started to feel physically weak as the days went on.  After learning about vestibular exercises on the Internet, I decided to start doing them on my own.  They seem to have helped with my balance and with my eye-darting issues.  I now go for very long walks. I am starting to drive again too.  However, everything feels totatlly different than it did before this all began.

There were a couple of nights where my brain was doing odd things. I got hot flashes (even though I'm a guy) and heart palpatations in the middle of the night one time.

My persistent systems right now are:

-suceptible to dizziness when on the computer, watching TV, doing quick head turns, being inside stores

-high-pitch ringing in my left ear

-fullness in my right ears that comes and goes, almost like there is fluid in them

-harder to concentrate

-unsteadiness as I move.  Sometimes it's a "bobble"; othertimes it's like I'm leaning in one direction or another.  Sometimes it's almost normal.

-sensitivity to sound, like the bath water running

-misidentification of sounds.  I sometimes think the garbage truck is outside, only to figure out it's our air conditioner.

Let me know what you think.  I would like to begin living a normal life again: return to work, use a computer and watch TV normally, be able to drive long distances without worry.  I'm thinking it's VN, but I did not have an "acute" spinning phase, plus the caloric test was normal.  The canker sore may be relevant because I've read that the herpes virus can attack the nerve. 

 

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  • Posted

    I would also say Kevin, I go for long walks everyday (5 miles or so) and do the exercises, I also got the palps which I guess is a side effect caused by the anxiety. I take a magnesium supplement now for this, it seems to work but could be a placebo.

    I have good days and feel ok but then wham, its back. I find conversation difficult and have pretty much withdrawn as I need peace and quiet. Its a crap existence to be honest but all relative I guess. All your persistent symptoms I have. The ENT guy said it was classic VN. "When will it end" ? Shrug of shoulders!! Keep doing the exercises....he said.

    Also I did question him how I could have perfect hearing and my ENG/calorific tests be completely normal. He skipped around that one...! I'm at a loss. 

    • Posted

      Thanks Chris.  I find walking in a park to be easy, but walking in a store or at work was really hard due to the stimuli.  It's like my brain has limited resourses now.
    • Posted

      I'm waiting for ENG and caloric testing as well. My ENT and vestibular therapist both told me not to be surprised if they come back normal. I'm wondering if its because it would be better to have these tests done in the acute phase and not a year down the road when lots of healing has happened
    • Posted

      Thanks Tasha, it's reassuring to hear that. It is particularly hard not to think it's something else when I feel so very ill. I do actually feel like I can't go on today it's that bad. I'm going back to the consultant I think and get some firm answers. Thank you for your comments
    • Posted

      I wish you well. Stay strong cuz alot of doctors really have no clue about inner ear issues. All they do is process of elimination most of the time. Each month gets better but its a slow healing process. Ativan helped me alot on days where the dizziness was unmanageable. I rarely have to take it now.
    • Posted

      To wait a year for the ENG/Caloric tests does seem too long. I had the ENG/caloric testing within 7 days of being floored by VN whilst on hospital abroad. My UK consultant didn't seem to think this was helpful as I was so ill at the time so wouldn't be a longterm realistic test. I then had the tests redone 2 months later when I had returned to UK (I was still ill/dizzy etc but not as bad). On both occasions when the water (in Poland) and air (in UK) was put into my ear, it felt tickleish in my damaged ear but fine in my good ear. They said this is due to the balance system in my bad ear being destroyed. I suppose this result would be the same in a years time as the left ear is permantly damaged. I need to retrain my brain using a set of exercises given by the hospital.  
    • Posted

      Hi Helianthus, thanks for your comment. You may have read earlier mine was well within "normal range", and my hearing "perfect" - which is why I cant figure why it is VN ? What were your results if you dont mind me asking? Just for reference I had the nystigmus eye LED tests, calorific with hot then cold water, walking/gait tests, I'm sure some others as it took 3 hours - this was 4 months into this nightmare. Cheers
    • Posted

      Whilst in Poland I had hearing tests (showed loss to high frequency in bad ear, also a little in good ear) and the caloric test using cold/warm water. Communication was limited here due to language barriers, they said the caloric test was the most important test I had and gave me a copy of the test result graphs which I don't understand. That's all I was told. I showed results to UK ENT consultant who thought they weren't too interesting as they were done when I was very ill. Following the caloric test in UK the doctor (well he claims he was a scientist not doctor) said that the balance in my left ear had been permantely destroyed, nerve damage i think? , that the vestibular isn't working properly (its hard to have a conversation after the test as they make you dizzy so can't think properly). He suggested I stop taking medication as it slows recover and to start the brain training exercises, especially focusing on the unpleasant ones. Further hearing tests in UK showed loss of high frequency sound in bad ear, but most recent test showed this had slightly improved. Apparently I was lucky to have not lost more hearing.

      I think if I have the test in a years time+ the caloric test would be the same - no balance ability in bad ear but perfect balance in good ear.  I'm not sure if my eyes would still flit about if by then my brain/eyes had retrained?

      I'm not sure if its strange or not that your test came back normal? It's not as if you've had a mild case of VN. I would have thought some damage would have been noted? Perhaps just inflammed? I am new to this game and it appears we all have similar symptoms with a touch of individuality. 

  • Posted

    This sounds identical to what I've been going through since the 3rd week of May. I also have a constant cracking noise going on with my right ear, and slight numbness feelings in my face.
    • Posted

      Sorry I am having troubles with this site as my posts are not going through. But I too am still in the testing phase and a bit leary to try another specialist because none of them are in any hurry to get us patients in and get us relief, I call into my ENT's office every week trying to get him to provide me with any type of relief as these horrible 'attacks' just come at any time. He will only put me on a methylprednisone burst pack, which makes my skin awful and doesn't relieve much at all and has me taking meclizine like candy. The medical profession in my area of the state's is horrible to be quite honest, people are actually afraid to visit our only local Emergency center because the service is dreadful. I'm actually considering tracking down a reputable Dr in Chinese Medicine to possibly see where that route takes me.
    • Posted

      Ok, I am sorry you are getting such a run around. They have to rule out things like stroke and heart problems. 

      Once they realise it is not life threatening they are not so interested. It is certainly quality of life threatening!

  • Posted

    Hi Kevin ,I've been as you are now for 4yrs ,Mdds ,I've tried everything to straighten myself from the Bobble as you describe yours as  and a big zero to date  I've never had any spinning  ( touch wood ) just the being on a boat sensation ,I've done exercise ,got to the point I've now stopped .

       I have tinnitus ,sounds like you have that maybe ,many with balance  have this as well ,neck ache is another one with many of us .

       With Mdds we are okay at driving ,doesent affect our balance ,it's only on walking ,even to sitting in a chair for some ,I get that  but never in a car  down to concentrating my husband says .

       Have good look at post ,see your not alone .With having tinnitus. I don't like to answer a phone. The pitch can be unbearable in people's voices ,what I will ask ,do you or have you had any allergies  that's another thread of the symptoms with us like Sinisitis as an example .

    • Posted

      Chris Mdds is called Mal de Debarquement Syndrome .Get so use to it as just Mdds .
    • Posted

      Thanks, yes that is a good way of describing it....interesting it is an actual condition too!
    • Posted

      Chris it has been said it can just go ,think on the Veda site this has been mentioned .Think it's good to share any info ,we get told about any of these ,as we all seen different drs worldwide ,all it takes is one good Dr I say .

         Miserable condition for anyone ,how anyone can work is beyond me  its a disability for sure .

    • Posted

      Marlene!  You are the first person I've found that mentioned the pain/pressure in the neck!  I will ask my doctor about MDDS.

      I was diagnosed with LAB/VN after presenting with many of the same symptoms that Kevin mentioned, although I've never had the total spinning ... just slightly dizzy. 

      Have you ever had swelling in your neck?  Mine seems to last for a few days when my symptoms are worse, then resides as they get better.  This cycle has been repeating itself for the past 60 days - but I just fight through it.  I've been on a number of airplanes, and no better/worse from those.  Antihistamines seem to help with many of my symptoms.  I have been to all of my docs - ENT, GP, Pulmanologist ... MRI, CT, numerous blood tests.  Nothing definitive.

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