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. 

 

5 likes, 302 replies

302 Replies

Prev Next
  • Posted

    Hello, just to give everyone an update.  I am still having problems staying on the computer for too long.  I've been trying to work, but only end up working about 1 or 2 hours befores the dizzies come in.  I end up leaving early every single day, but they have ordered a laptop so that I can work for home.

    I've made some improvement in how much I can tolerate being inside a store.  Traffic at intersections still disorients me; I always have to stare down at the floor.  This is when I'm stopped.  I've had a few days straight without much of a bobble, but I can still tell something is off.  On top of what I'm going through, I just got diagnozed with arthritis in both my knees.  That sucks since I'm only 40.  I'm going to see a artihritis doctor to see if it's rheumatoid.  I already knew I had it in my neck.  It's possible that I may have inflamed my knees doing some of these vestibular exercises I've been doing on my own (like sitting up in a chair 10 times in a row).  I am going to vestibular rehab on Monday. I'm dreading it since now I  have the arthritis and I get dizzy in public places.  It looks like it's at a huge complex.  Hopefully I will have better days ahead because right now it is hell.

    • Posted

      Kevin- sorry to hear you still feel so awful. Like I said I'm over a year into this and I still have my days- but it does get better. I've learned that the fluorescent lighting triggers mine big time. I work in a school so I was at my worst while at work but I still forced myself to go.. I think that combined with vigorous excercised helped me. I forced myself to workout no matter how cruddy I was feeling. I think my brain is 75% retrained now but I definitely still get the spins. I can only sleep in certain positions, I can't sit in the back of a car, can't go on rides, etc. these things all trigger it.
  • Posted

    Have you looked into Vertical Heterophoria? I just got new glasses and I have seen some improvment. Here are the symptoms.

    Symptoms Of Vertical Heterophoria:

    Dizziness

    Headache

    Anxiety

    Lightheadedness

    Nausea

    Unsteady Walk

    Poor Coordination

    Poor Depth Perception

    Motion Sickness

    Eye Pain

    Neck Ache

    Uncomfortable in busy surroundings

    Sensitivity to Light

    Double Vision

    Overlapping Vision

    Difficulty Reading

    Tilting Your Head

    Pain when moving eyes

    Shadowed Vision

    Losing your Place when Reading

    Blurred Vision

    Disorientation

    Imbalance

    • Posted

      Hi Rock ,I've been keeping eye out for anything you place in regards to this ,I've since been passing this along to others to take a look into .seems to tick most of my boxes .Good to keep passing on this info for others to go and read up on ,Glad your feeling the difference.😃
    • Posted

      Hi rocksolid....so glad you are feeling better......Dr's office called me...My insurance is not taking on any new optometrist........and my reinbursement is going to be only about 100......I am planning on going to make an appointment after all the holidays are done........I actually had two good days   today not so good......probably will go see her the end of January.......going to take amtrac and LIRR  cant do that drive.........
  • Posted

    Hi Marlene,

    Hope you are feeling well. I wanted to give the glasses a little time before reporting in. I have a few days where I feel pretty good and a couple of not great days. The doctor said it may take up to 2 wks to feel much better and today has only been 1 wk.

    • Posted

      Rock ,that's good being its been short time of a week ,there's that saying Rome wasent built in a fortnight ,( said often in UK ) It all takes time for anything to work out ,but I've looked into this ,why I've passed this on ,never heard of it until you brought this up while ago ,looks promising got to say Rock .i know I've got a lot on that list you've placed ,think Dizzy Darren has to ,but I know he's now gone into Varifocals ,and was doing lot better last time we spoke since glasses were introduced .Hope he pops in on site ,and follow up on his time with them .

         I'm so ,so ,well you know how this all goes daily  Im still somewhat static with this Mdds ,if you can get back regularly over next few weeks ,just to let us all know how your going with them ,that would help us all ,Give overall opinion to them .All helps .Hope others on here will go and check this out. Anne I think was going to get another eye test ,maybe something for her to mention ,worth getting it looked into .Ive heard Mdds and Mav are linked together .Never knew that either  see how different ENT over the world vary in what they know .Good to talk Rock .Takecare .

  • Posted

    I will check in now and than and keep you posted on things.
  • Posted

    Hello everyone.  I am the OP and thought I would give an update.  I am happy to say that I am about 50% recovered!  The full onslaught of symptoms lasted six weeks.  It wasn't until the seventh week that things got better.  The "bobble" has been gone since 7/28.  Ear fullness has decreased.  I am able to withstand stores.  My dizzy spells are much more rare now.  I can watch TV and be on the computer for long periods of time!   The ringing in my left ear is still as loud as ever.  The brain fogginess is down 50%.   I can still only last about 4 hours at work, but they are giving me a laptop to start working from home.  

    I am in the initial phase of vestibular rehab, but I don't attribute my recovery to it.  Still, I'm going to go through with many more sessions.  I also saw a second ENT for a second opinion.  He talked to me and my wife for quite a while, but did not commit to any diagnosis.  He said VN is possible, but the people he's dealt with that had it were spinning at onset, which I wasn't.  He didn't seem worried about the unpopable ear.  It looked fine in his microscope.  For the ringing,  he thinks as young as I am (40)  that it will go away eventually.  He did suggest getting another hearing test done, which I am going to do.

    I cannot celebrate too much however, since I seem to be having on onset of arthritis.  Both my knees have been inflamed for about a week.  Also I'm having some pains in other parts of my body.  Not sure if it relates to the vestibular stuff, but I see an arthritis person in a couple of days.  It may be RA.  I'm also seeing an otologist and a neurologist on August 25th. 

    By the way, I'm from Ohio.

    • Posted

      Hi Keven, glad to hear your improving.  I am starting to wonder if having arthritis and this condition are related. Lots of us seem to have neck/joint pain and i wonder if it too affects the small bones in the inner ear, but then again that would take some research and it's just a theory i've had, because i have found with this condition it's clutching at straws trying to find out what's really caused the problem.

      Hope your recovery continues and you get back to where you were before it all kicked off.  Best wishes.  Anne,

    • Posted

      Great news Kevin and please keep posting on progress. I still have the ringing though the VN is gradually retreating (with relapses). I have now gone nearly 3 weeks since a vertigo attack although I don't feel 100%. I still have the annoying finger tingle and face tightness which is why I think hypothyroidism may play a part though I am clinically insignificant apparently even though count is up (been chatting to a fellow sufferer on here so you may have seen this).

      I have neck MRI result on Friday after head was clear. 

      I find it interesting about the "other pains". I am completely accepting when my GP says "anxiety" -we all know this induces it and its beyond our immediate control. I too have a raft of other things going on since I got VN, not least the other night some chest pain which I am going to mention on friday. I'll push for a work up on that I think.

      But knowing where to stop is a problem, surely not all these things are VN and anxiety related? Or are they!!

      Hope the arthritis is not arthritis, best wishes, Chris   

    • Posted

      Hi Anne ,I've been thinking same as you  how weird is that ,the neck ,plus I've had arthritis in both knees for a very long time as well .Connection to any of it ? 

        I've got IBS and Reflux ,some have mentioned they have both of these going as well since having balance ,just talking on another site today about this. Plus having arthritis pains .? 

        So many questions and theories as you've said This is so draining .

        Rocksolid came up with this  Vertical HETEROPHORIA .Go look at those symptoms  thought of you and going for eye test .

        Hope all goes well at op next week Anne xx

    • Posted

      Great to hear Kevin. You said you did not think the vestibular therapy was the reason you are feeling better, so why do you think you are feeling better?
    • Posted

      thanks Marlene.  I'm anxious about going in to hospital on MOnday and having a general anaesthetic and what impact that might have on my balance etc., as i have been much better lately since taking the nortrityline 10mgs and totally excluding chocolate, cheese and caffeine.

      I was also contacted by DVLA to fill out a questionnaire and my ability to drive and informed that any driving insurance is invalid if you do not let them know you suffer with vertigo and dizziness or any condition that could affect your driving etc., , so am wondering if my occupational health have informed them as i drive for a living and recently had a consultation with them about my concerns.  Was really upset about that, cos' if they did they could have had the decency to let me know at least. 

      Anyway i'm getting abit beyond caring lately and just trying to go with the flow but would really be upset if they took my driving licence away so hoping it's just a formality. 

      Thanks for your best wishes Marlene.  Take care.  Speak soon. Anne xx

    • Posted

      I don't attibute it to the official rehab sessions, since my only two visits so far had me doing nothing really.  She was basically giving me a bunch of tests in order to get a baseline.  However, I have done my own rehab exercises from the beginning of this, so maybe that has helped.  I have also systematically forced myself into dizzy situations like stores, and maybe doing that over and over again got my brain readapted.
    • Posted

      It possible they are connected for me (arthritis and VN symptoms), but the timing seems off.  I got VN symtoms in mid June, but the arthritic flare up came in August, and came while the VN was going away.  Anything's possible, so I'm going to mention both sets of issues to the upcoming doctors. 
    • Posted

      Thanks, the arthritis is already diagnosed.  I just need to know how bad it is, and if it is Rheumatoid.  Honestly, I think I agravated my knee arthritis by doing some odd vestibular exercises I found on the Internet (like leaning forward, getting up and down from chair 20 times, etc.)

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.