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Does this sound like Vestibular Neuritis?

Posted , 31 users are following.

Kevin5555
Kevin5555

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

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  • jonAustralia
    jonAustralia Kevin5555

    Posted

    Hi Kevin. You describe prefectly all of the symptoms that I have had in my latest bout of VN. My first bout was two years ago and I was so scared, I called an ambulance and three days in hospital returned the diagnosis of VN. After 7 weeks all of the symptoms had totally disappeared other than the ringing in my right ear, of which I had had for some 20 years. This time around, in my sixth week after violemtly being ill for 8 hours, I decided to fix myself. I am getting much better with each day and have incorporated long walks but the depression still comes and goes. So Kevin, you are not alone. Certainly you can get help for the dizziness and the depression and I therefore recommend you seek professional help for this, but don't be surprised if most don't know any more answers than you will read on this site. I wish you all the best and good health, soon. Jon
  • rocksolid
    rocksolid Kevin5555

    Posted

    You can look into your SCM muscle which is in your neck and also look up Verticle Heterophoria, which is an issue with eyes.
  • paula59
    paula59 Kevin5555

    Posted

    Hi Kevin - I have more or less the same symptoms, had a million tests as Ive had this for three years now.  Ive been told Ive got silent migraine.  The ENT told me to carry on with life as much as possible and its true I seem better when I keep going than when I give in to it.  They also told me to carry on driving which I have done.  I used to have jumpy eyes but that seems to have gone, I do get periods now where I get some respite in the day but its always back by tea time.  I have had all the panic attacks and anxiety but again Ive learnt to live with it.  I expect to have it forever now so try not to get anxious anymore.  I concentrate on stuff I can do and accept the stuff I cant do.  Its hard and Ive had to give up my hobbies of latin and ballroom dancing and so have put on weight which Im fighting with.  Try not to stress, its not life threatening and I think the docs dont really have a clue.  Hope you feel better soon. 
  • fasthorse
    fasthorse Kevin5555

    Posted

    Sorry you suffered so much, Kevin..Have you tried something simple like a nasal flush using a neti-pot or a bulb syring?..sometimes that can help. You say you had fullness in the ears, and i had the same with my first serious experience with dizziness/vertigo...Some of your symptoms sound like panic attacks or adrenal rush..I had one day of hearing distortion like you describe. I was on my motorcycle without earplugs...the bike sounded horribly loud and unsteady..(it is loud, but not like this)..it was just the ears..also might ck your neck alignment via a reputable chiropractor..Prayers for  your good health.
  • laurence76206
    laurence76206 Kevin5555

    Posted

    Hi Kevin,

    In my 7 months experience of this horrible condition it does sound like you could have either VN or Labyrinthitis.  Like you I saw both an ENT and neurologist, I had two scans of my brain and one to check on the arteries/veins around my head. These all came back normal.

    Both the ENT and Neurologist diagnosed VN.  I have had all the sysmptoms you describe (and many more).

    You are doing the right thing in getting everything checked out.  I am now under one of the top otologist's and his physio in the UK, if you are in the UK you may want to check out Mr Peter Rea, he wroks out of hospitals in Leicester.

    I hope you get some answers soon.

     

  • chris1303
    chris1303 Kevin5555

    Posted

    Just wondering. How many of you develop other symptoms while in this "process"? I ask because I'm not sure whether I am now accumulating a whole plague of anxiety driven by this or whether it is as I sometimes think not VN at all - I have over the last few months started getting pins and needles in my hands, below my knees and on my face. When I look at the anxiety boards many complain of this. Anyone else here get this sort of thing. I'm back with the ENT on Friday to discuss my brain MRI which seems to be clear but I'm pretty sure he;ll just brush these things aside....when I will then probably ask for a neuro referral...cheers all  
    • laurence76206
      laurence76206 chris1303

      Posted

      Hi Chris,

      there is a useful site called Labyrinthitis.org.uk set up by previous sufferers called Emma and Isla which lists a whole host of symptoms associated with vestubular conditions.  Although this does not list the tingling that you and I experience it does pretty much list everything else that I have noticed over the 7 months since suffering from the VN.

      Some of your symptoms may be due to the anxiety but this is just another symptom of this condition.  Like you though I am convinced that there may be soemthing else going on with me (aside from the VN) hence I have a blood test tomorrow to check my thryroid (again).

      Hope you get some answers soon

      Best wishes

      Laurence

    • chris1303
      chris1303 laurence76206

      Posted

      Thanks Laurence I've seen that site before during my many hours of immobility! I am seeing the ENT consultant tomorrow and will be asking him for a neuro referral but also discussing the thyroid issue. Do ENT's also look at thyroid, it is in the neck after all although I know an endo is the specialist.... please let me know how you get on, your symptoms and sub clinical thryroid match mine so it will be useful, I'll let you know how I get on too, cheers...Chris
    • chris1303
      chris1303

      Posted

      Seems I am also repeating myself! I said all that in my earlier post ! God help me!
    • laurence76206
      laurence76206 chris1303

      Posted

      Hi Chris,

      Like you I match so many of the symptoms associated with  the thyroid it's unreal.  I have printed off the list of sysmptoms from one of the websites and will take this to the GP tomorrow.

      I am not sure whether the ENT specealist would look at the thyroid but Mr Rea who i see commented about my thyroid hence why I am getting it checked again.

      Apart from checking the T3 and T4 and TSH levels there is also further tests for TPO and Tgab not sure what these are though but I will ask the GP to check.

      I will let you know what my results are, this will proabably be early next week.  If all is ok my sysmptoms must all be entirely due to VN.

      Cheers

      Laurence

    • chris1303
      chris1303 laurence76206

      Posted

      Hi, if you havent had an MRI you might want to ask for one. The additional symptoms we get could be a neuro problem like MS, I know that is always bandied about as it mimics so many other things that could also be the thyroid but it is out there. I get a weird thing - touching my chin to my chest gives a buzing in my legs, L'hermettes sign, that is an MS symptom but could also be a neck problem (I had a bad ski accident years ago). I don't think it is at all wrong to be over cautious on these things and to get every avenue checked.

      I also look at non symptoms - I have no other MS ones aside the tingling and above, no optical neiritis, bladder probs etc which are all early signs. The thyroid I dont have weight gain or dry skin etc but then I'm not hugely hypo!! It could just be VN !! Ah well, good luck tomorrow, I'll post my results too, thanks Laurence 

    • laurence76206
      laurence76206 chris1303

      Posted

      Hi Chris,

      I have had two scans of my brain and one to check the arteries around my head, they all came back normal.  Like you I also do not have any weight gain, I have lost weight but then this is consistent with VN.  It may also be due to the fact that due to my illness I have not drank beer or indulged in other goodies for 7 months.

      Like I think I mentioned before it could be both VN and thyroid issues I am suffering?!

       

    • chris1303
      chris1303 laurence76206

      Posted

      I mentioned optical neuritis as an MS symptom, I just googled it with thyroid and guess what....it is common when you are hypothyroid !!
    • laurence76206
      laurence76206 chris1303

      Posted

      Hi Chris,

      Just an update on my situation, I had my thyroid checked and this came back normal.  The TSH level was 4.8 which is within the normal range for my area.  Some areas of the UK us 4.5 as the top level for TSH but my area uses 5.  I don't kbnow why areas decide on differing levels for the TSH reading you would think that the NHS would use the same throughout the UK.

      I must assume that all my sympoms are due to the VN.  I do know others with VN who are also borderline Hypothyroid.

      I felt as though I was making some subtle progress doing the VRT last week, but this week I feel as though I have gone backwards as my balance is not as good.  This may be the pattern of recovery whilst doing the VRT, with some good weeks and some bad and eventually the weeks will all be good!.  I do also manage three 10 minute walks per day (total of around 2 miles)

      I hiope you are getting on ok, did you have your thyroid checked again?

      Cheers

      Laurence

    • chris1303
      chris1303 laurence76206

      Posted

      Hi Laurence....Sorry to hear you've gone backwards a little it's happened to me a lot although it does seem to be one back two forward (touchwood) and slow improvement, which makes an attack all the more frustrating.

      I am seeing the consultant again on Friday following a neck MRI as the head one was clear. The tingling is still there but weirdly reigned in by having a Berroca a day! Perhaps its a blast of B12 helping out. 

      My thyroid from memory on my two readings was 4.8 and 5.4 which like yours is borderline. I will ask for another on my visit this Friday. It's interesting, as I think I mentioned before that many suffer symptoms at much lower levels and in the States I think the limit is 2 (although they may use a different scale). Not telling you something you may know but of course TSH is a very crude measurement - there are also all the others T4, T3,T2 and T1 and so on - the thyroid uk site is pretty good (not sure if I can post links here so google it) to give you an idea. 

      I may push my GP for a full screen but they don't like them as they cost a bit - privately its around £100 so if I have no joy at the GP I will pay and give them the results.

      I also have my 3 month follow up booked at the local hospital but that will likely be just assessing my VR exercises. I am getting slow improvement and get the occassional day I feel almost normal! 

      This is a bloody awful condition. I'm still not convinced that hypo plays a part so if I were you I would push for a more detailed blood test, especially after you've read up on it and can present some evidence to the GP - one of mine is quite receptive to a few sheets of A4 for evening reading!

      Best wishes, I hope you move forward again soon.

      Chris 

    • chris1303
      chris1303

      Posted

      *not convinced hypo DOESN't play a part !

       

    • chris1303
      chris1303 laurence76206

      Posted

      I should read back on previous posts - I see you are up to speed on all the thyroid checks! 
    • laurence76206
      laurence76206 chris1303

      Posted

      Hi Chris,

      I have been taking a multivit per day.   I was taking a B12 supplement and felt that definitely helped perhaps I should take this as well as the multivit.  How long have you had the VN.  I am now at month 8.  The consultant expected me to have a marked improvment within 3 months of starting the VRT but I am 6 weeks in and not made a great deal of progress.  The pattern of my condition was that I got dizzy and remained at a reasonable level for the first 3-4 months and then got a lot worse.  But like I have said I do feel that there has been some subtle improvment over the past 6 weeks.

      Glad to hear you are gradually improving, what VRT do you do?

      Cheers

      Laurence

    • chris1303
      chris1303 laurence76206

      Posted

      Hi, I went down (literally) with this in February, so 6 months now. I was bad for 3 months before any improvement whatsoever. The VRT consists of walking for 4 minutes shaking head side to side, then 4 mins up and down, then a figure of 8 just walking. Then its one foot in front of the other, close eyes and balance for two minutes, reverse feet, repeat and finally 2 sets of 2 minutes focusing on a spot on the wall while moving head side to side and up and down.....It does seem to help but then I could just be improving anyway! 

      I try and do these out on a walk...without being noticed...

      I also take a fish oil tab, magnesium supplement and the berroca mainly because I have a degree of health anxiety now!! What a surprise!

      Thanks, Chris

       

    • laurence76206
      laurence76206 chris1303

      Posted

      Hi Chris, Is the Berroca a multivit?  I was also taking fish oil so will start with these again.  I bought some Magnesium but have never taken it as I was worried about overdosing on viatmins/minerals!

      Are you able to work?  Unfortunately I was dismissed last Tuesday due to my ongoing ill health.  I did manage to work for the first month but then found it difficult to drive and concentrate.

      My VRT does consist of head movements and looking at a spot on the wall, I do this three times per day but it only takes me 1 minute to do them.  This is as instructed by the Physio it makes me think that I am not doing enough?

      Thanks for the advice

      Cheers

      Laurence

    • chris1303
      chris1303 laurence76206

      Posted

      Hi, sorry to hear about the job. I was made redundant a few years back and haven't gone back, did a deal with the wife about housework and kids and dinner on the table! Drop in income but an easier life (for me anyway). If I were working though, and I drove a lot in my job, I wouldnt have been there for 6 months so probably would have been let go too.

       Yes Berroca is just one of those dissolvable multi vits in any supermarket or Boots, the magnesium I take to help regulate the heartbeat - I have always got ectopics and the induced anxiety from VN wasn't helping!

      It doesnt sound to me like you are doing enough - basically the ENT guy said do them until I got dizzy or the times I gave above whichever happened sooner, mine take 40 minutes a day with no ill effects. 

      Have a go!

      Chris

       

    • laurence76206
      laurence76206 chris1303

      Posted

      Thanks Chris,  Just spoken to my Physio he told me to introduce a 4th session which I have just done and now feel dizzy (good sign).

      Good deal with the the wife, mine is now currently enforced so do all the stuff you are doing with the exception of the kids (we don't have any).

      The VN does make me very tense each day which does tend to zap the energy levels!

      Cheers

      Laurence

    • chris1303
      chris1303 laurence76206

      Posted

      I did 40 minutes from the start, though I was told only to do what was comfortable. It did make me worse initially. I'm sure you know this but not getting depressed is critical. I also take on bad days some Holland and Barrett "Quiet Life" pills to take the edge off, they're pretty good in just blunting it, they don't make you drowsy just a bit more relaxed. Helped me a bit. Cheap too!

      Chris 

    • chris1303
      chris1303 laurence76206

      Posted

      Hi, just a quick update...my neck mri was interesting. I have degenerative discs and have to see the neuro now as cervical stenosis is a distinct possibility. If nothing else it shows the importance of pushing and pushing for examinations. My GP said anxiety. He was adamant. Bit angry! It is quite possible I have VN still but the nerve compression could also be causing dizziness and the tingling. Perhaps VN has gone? So off to the neuro..! Hope yours is improving. Cheers Chris
    • anne05147
      anne05147 chris1303

      Posted

      Chris glad to hear you're getting somewhere.  Definite link with all this neck stuff and i have a bulging neck disc also so always thought the 2 were related.  Hope you can get some action now they know what is wrong.  Best wishes.  Anne.

       

    • laurence76206
      laurence76206 chris1303

      Posted

      Hi Chris,

      I have never looked into problems with my neck but like other VN sufferers it does give me issues.

      I am suffering with stomach problems this week , this seems to be an on/off thing with me.  I know others also suffer stomach issues with VN.

      I went to see my GP to discuss my blood results and in particular the thyroid issue.  He said my results were all fine and that my thyroid levels had actaually decreased over the 3 years they have been checking them.  just befiore I left I asked what my lymphocyte level was and he told me it was a little low.  When looking back at previous test results he noticed this level has been either borderline or slightly low for some time. I now have to have further blood tests and maybe see a blood specialist.

      Someone else I liaise with also had low lymphocyte levels so whether this is typical of VN i won't know until I see the VN specilaist in a months time.

      Glad to hear you are getting somewhere with your GP, they always like to blame everything on anxiety.  Of course we will be anxiuos because we are all so confused about what is actually going on!.

      Cheers

      Laurence

    • chris1303
      chris1303 anne05147

      Posted

      Thanks Anne, I'll keep you all posted as I'm sure these things are all linked, the only way we'll get anywhere is sharing information. ..
    • chris1303
      chris1303 laurence76206

      Posted

      Hi Laurence...I still have the thyroid to attack! They did take blood for vitamin b12 deficiency but I cycle 30 or 40 miles most days so I don't think I have pernicious anemia. . Will keep you posted!
    • anne05147
      anne05147 laurence76206

      Posted

      It is a very sloppy, lazy GP who blames everything on anxiety and or depression.  If you have one of these it would be best to change GP's or start telling them what you want done and keep persisting, if you have the energy to, as it can be pretty exhausting.  It's good if you can get a good GP and can make all the difference between getting a diagnosis and being left labelled as some kind of neurotic.

    • fasthorse
      fasthorse chris1303

      Posted

      Thank you for your update.... my Dad had spinal stenosis..was told he could have surgery or do certain exercises..He's been with the exercises 45 min/morning for 18 years or so. He does have a problem with balance, not dizziness...perhaps they are related.  I also have degenerative arthritis in the neck..new xrays show 2 vertebrae are almost closed...working with chiropractor..had no dizziness last week until Fri. night when cutting vinyl for floor..too much time bending forward....if that's any help..I hate the "anxiety" diagnosis..usually bogus. Keep us posted. God bless all.
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