1. Community
  2. Ears, nose, throat and mouth
  3. Vertigo and Dizziness

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

Prev Next
  • chris1303
    chris1303 Kevin5555

    Posted

    I was thinking today regarding my progress through the health specialists. Aside the usual frustrations and delays and no one listening I am a little concerned now about my Vestibular Rehabilitation Exercises. I mentioned the other day that my neck MRI showed C3 damage/stenosis which wouldnt have been picked up had I not insisted on the scan following a clear head one.

    What prompted me to insist on this was the tingling in my fingers, legs, toes, tongue and face that started a couple of months ago.  I calculated I have done around 250,000 (yes a quarter of a million) quite aggressive neck movements while doing the VRE's these past 4 months - could they be responsible for the tingling issue? My neck has never moved as much in that fashion, just thinking whether I have aggravated or exacerbated a previously benign issue? I might stop them to see if the tingling resolves itself. 

    I'll ask the neuro anyway.....just thining allowed...

    • Kevin5555
      Kevin5555 chris1303

      Posted

      I would think that repetivie neck movements, especially with a know neck issue, would not be good in general.  If I were you, I'd speak to your threapist about doing it a different way.  By the way, I also have neck issues, and I was very upfront with my therapist about it.  I still do some neck exercises, but she is also attempting to help the neck issue itself through massages and things.  Not sure if that's what she should be spending our sessions doing!
    • chris1303
      chris1303 Kevin5555

      Posted

      I didnt know I had neck issues, only when the mri was done which they didn't think was necessary. One thing though, I am so glad of Google and sites like this. Think how it used to be, having no real way of researching issues or counter arguing against a GP.
  • Kevin5555
    Kevin5555

    Posted

    Here's another update.  I did the rheaumatologist appointment, and the blood tests have come back.  No signs of RA.  However, I am Vitamin D deficient!  Level 13 to be exact.

    He has perscribed me vitamin D pills.  Now I'm starting to wonder what role vitamin D had in this whole battle I've been through.  Perhaps I've always lacked the vitamin (I'm vegan), or perhaps that stomach flu I had drained it out of me.  I checked all the things I eat, and the multivitimins I take, and there seems to be plenty of D.  I do avoid the sun, so I'm going to start basking in it now.

    Anyway, I wonder if my dizzy weeks were from the lack of D.  Perhaps some of my most recent bone pains are from it too.  The way the dizzies came on full blast over the course of a week doesn't seem to go well with a vitamin D deficiency.  I haven't talked to the doctor in depth about it yet, and I think there are other test results still coming in. 

    • anne05147
      anne05147 Kevin5555

      Posted

      i was vit D3 deficient, showed in blood tests and most of those of us who live in UK are too due to not much sunshine, especially winter times. GP told me to buy a vit d3 supplement but i must have taken too much I took too much for me which caused blood shot eyes so need to find the right dose.  It can cause dizziness if you are deficient.  Hope you feel better soon.  Anne.
    • marlene21102
      marlene21102 anne05147

      Posted

      Hi Anne I learn something new every day ,will pass that info on to another dizzy site Im on .amazing the things we don't know to Dizzyness and lack of Vits can do ,or to much .Ive got most Vits but not that one ,will go have a read up now .X 
    • anne05147
      anne05147 marlene21102

      Posted

      Hi Marlene  get vit B12 checked too as this can cause dizziness also.
    • marlene21102
      marlene21102 anne05147

      Posted

      Hi Anne ,yes my husbands got me some ,not opened the tub up yet ,I'm okay with B12 ,but not the B6 .as that's good one for anxiety .why I'm okay with one ,but not the other I find mind boggling ,still both B Vits end of the day .Drs and chemist say they've no knowledge into the workings why some get upset stomachs from certain Vits .Trial and effort as most things are I guess .
  • rocksolid
    rocksolid Kevin5555

    Posted

    It's true, low Vitamin D can make you dizzy, but most people, about 75% of us are low in Vitamin D so it's not as big a deal as you would think. I too, was low and probably still am. Get 20 min of sun a day and that number should go up.
  • Kevin5555
    Kevin5555

    Posted

    Okay, here's an update.  It's a bad one unfortunately.  On 8/18, the VN-like symptoms started increasing again, and have been growing steadily. Keep in mind that I had been improving throughout August.  Today has been one of the worst days of the month.  I've had a few hours worth of generalized dizziness. Nothing triggered it, it just happened.  Ear sensations are increasing, and so is my vulnerability to motions on the TV screen. It's not as bad as it was in July (no bobble), but I fear it might be heading that direction.  I've done a ton of vestibular exercises every day since late June, so why would I be having such a backslide?

    This does not bode well for my career.  I was hoping to go back to 40 hour weeks in September, now I'm left having to explain the need to extend my leave.  The only good news is I finally see an otologist on Tues, followed by a neuro at a separate facility.

  • chris1303
    chris1303 Kevin5555

    Posted

    Sorry to hear that Kevin, but you are not alone....I had three weeks of stability until a few days ago and I am back to being on the sofa most of the day. I have no idea what is going on here now aside my neuro visit on Friday for the neck mri issues. Is it all that? Is it VN? If I hadn't had a clear brain MRI I would be even more concerned than I am right now. I feel as crap as I did 5 or 6 months ago....at least the tingling in my hands and legs has stopped since i gave up on the VN exercises when I found my cervical spine had issues - I'm not aggravating anything until I speak to the neurologist but surely stopping them hasn't kicked this dizziness back in?

    I am not enjoying this weekend !! Best wishes to all...

    • laurence76206
      laurence76206 chris1303

      Posted

      Hi Chriis,

      I had about a week of better (not briliant) days but today I am all over the place.  Feel very dizzy and my eyes are really weird (like they are being pulled together).  I think I have been overdoing the VRT and walking but my physio wanted me to increase both so I am fighting through it.  For today only I will reduce the walking but keep up with the VRT.

      I have been taking a magnesium supplement which I think has suppressed a lot of the tingling but I still do get this to some degree.

      I have had this now for 8 months and like most others started to improve (around month 4) but then got bad again.  I feel like there has been some small imrpovments since starting the VRT 7 weeks ago but as the Physio said it will take a long time (probably another 4 months at least).

      Hope you start to feel some improvment again soon and that the neurologist has some answers for you.  

      Keep positive

      Cheers

      Laurence

    • anne05147
      anne05147 laurence76206

      Posted

      Hi Laurence, do you think it might be due to weather, pressure. Are you in the UK?  I was all over the place on Thursday and Friday, with improvement on saturday and better today now that it's starting to rain.  Mind you i did also have a general anaesthetic on monday and stopped taking my meds 2 days before that but am now back on them as resumed them on monday evening after surgery. It's like trying to find a needle in a haystack but prior to this i had felt really good for the past 3 weeks and thought i was really on the mend.
    • laurence76206
      laurence76206 anne05147

      Posted

      Hi Anne,

      Yes I also think that weather does play a part.  I do tend to get dizzier in hotter weather, it has been warm aagin today but has now started raining  in Northamptonshire.

      I also think that some foods upset me.  My consultant told me to avoid citrus as well as the usual suspects (reduce salt, avoid caffiene, chocolate and alcohol).  I had a thai curry last night and it had a lot of lime so this did not help.  Lack of sleep also affects how I feel and again my physio said that getting enough sleep is important to recovery, unfortunately I have never been a good sleeper.

      hopefully it will settle down again tomorrow and I can get but on shanksy's pony staggering around the village I live in!

      Best wishes

      Laurence

    • anne05147
      anne05147 laurence76206

      Posted

      I know, i don't drink but must appear drunk on occasions.  I do think that the meds the neuro otologist put me on have helped, at least i hope that's why i felt so much better since starting them.  He told me to be careful from now on what i eat, to keep a food diary, try not to get stressed, that if he's seen me sooner he could have helped me more, but that i had basically been wasting my time with ENT past 2 years.  He said i have all the symptoms of silent migraines and not to get my BPPV mixed up with silent migraines because it is the migraines that are causing the exhaustion.  I felt much better and glad i pursued it cos' i thought it was all going to be another waste of time.  Last week i forgot and ate some chocolate and by the time i got home from work had gone completely wonky until i remembered why.  I have also cut out cheese, caffeine and wholemeal bread because after having a slice of it the other day went all wonky again, it's too heavy with wheat maybe, who knows.  I am taking it all a bit more seriously now since the chocolate biscuits last week.  It's not necessarily one particular food maybe as the intensity and frequency of it i'm supposing and i am waiting for a book to be delivered on migraines that might help.  The consultant told me that the oldest patient he had was 90 years old when this condition started for them.
    • anne05147
      anne05147 laurence76206

      Posted

      I've sent you a reply but it is being moderated for some reason.  Hope you get it, eventually.
    • chris1303
      chris1303 laurence76206

      Posted

      Hi all, yes I did wonder about the weather, I started going downhill when it warmed up last week here in Norfolk. No rain yet today but I'll let you all know. Sleep is really important, if I sleep badly (quite often) or have a drink and don't get quality sleep it does affect me noticeably...beyond what may be a slight hangover!

      Did I mention a horrible b*stard wasp stung me on the back of my neck on Friday? That's all I needed ! 

      Well, Its clouded over here so I am willing a downpour. It makes sense that high pressure and humidity could have an impact as the inner ear is by its design pressure sensitive, I'm sure Dr's would scoff at us but we all seem to have common ground a lot of the time beyond what I would say was coincidence. 

      I just managed a 7 mile walk along the river, physically I seem fine but its mentally exhausted me doing it, having to concentrate on every step.

      Best wishes all.  Chris 

    • laurence76206
      laurence76206 anne05147

      Posted

      Hi Anne,

      The consultant I see mentioned that I am probably getting migraines with the VN (it happens in about 40% of VN cases), nothing really severe just mild aching around the head and face and some stomach problems, this is why he suggested staying clear of salty foods (e.g chinese) and citrus (as well as the other stuff I mentioned).

      I have just been for my first walk of the day, the physio has told me to try doing around 40 minutes per day walking split over 3 or 4 walks.  I do around 14 minutes 3 times per day and manage about 2.5 miles in those 3 walks.

      If I eat certain foods or there are changes in air pressure I find it very hard walking as this affects my dizziness and i tend to veer more to the left and then start to stagger like I'm drunk.  

      I have seen both a neaurologist and ENT consultants, they both diagnosed VN although the Neurologist was not entirely sure.

      Mr Rea who I now see is probably the top VN specilaist in the UK and has said that I have a definite case of VN so I respect his diagnosis (although like us all still have some doubts).  As I have said to Chris in these posts I am also borderline hypothyroid but this does also seem to be the case with a lot of other VN sufferes I am in contact with as are problems with stomach upsets and tingling around the face

      Anyway, I like everyone else will keep fighting on until I am finally rid of this horrible condition.

      Best wishes

      Laurence

       

    • chris1303
      chris1303 laurence76206

      Posted

      This may be of interest to some of you, and you may do it yourselves. I type up my symptoms every visit to a consultant and just ask him to read it before we begin so I haven't forgotten anything and he has a reference after. This is my latest for the neurologist on Friday......though not tidied up yet. Probably sounds way too familiar to most of you! 

      History: February/March 2015

      Vertigo? - like shaking head quickly/rolling eyes but all the time, like a fierce "coffee buzz"

      Started a week or so after flu or what I guess was flu. Mid February.

      Some days better than others - can't get up sometimes, others almost normal.

      Pressure in ears.

      High pitch ringing in ears - though tone randomly changes, noticeable at night.

      Slight pressure behind eyes, sides of head.

      Thick, heavy head, fog, like after a cold, light headache.

      Loud noises "rattle" in my ears, sound very sharp.

      Sleeping not brilliant - but I'm not fatigued.

      "Crackly" neck.

      Continued to around early June, started VRT and also now:

      Tingling left hand, mostly little and ring finger but also thumb and back of hand

      Right hand, less so

      Legs around knees feel tingly 

      Some tingling in feet

      Hands go to sleep at night

      Legs tremble touching chin to chest

      Tip of tongue tingles

      Head feels shrink wrapped

      Very minor trembling in right calf

      Still dizzy for 4 or 5 days every couple of weeks

      Dizzy/head fog seems to clear overnight then comes back a couple of hours after getting up 

      Could VRE have caused a problem? I have done over 200,000 vigorous neck movements....

      Blood screen : slightly underactive thyroid "non clinical", Gilberts Syndrome.

    • laurence76206
      laurence76206 chris1303

      Posted

      Hi Chris,

      What have you actually been diagnosed with (I'm sure it will be on your previous posts)?.  I have listed all my sysmptoms in the past but here they are:

      Off balance (veer to the left) 24/7 (the severity varies)

      Fatigue

      Weak legs

      Poor sleep

      Tingling around face/head

      Occasional tingling in back of hands and top of legs

      Occasional upset stomach

      Occasional nausea

      stiff neck

      Anxiety

      Sore eyes

      Difficulty watching some things on TV

      Can't spend to long on the PC or telephone

      Weird pulling/stiff sensation around eyes

      Occasional blurred vision

      Popping right ear and burning sensation

      Trembling in stomach muscles (not all the time)

      Occasional headaches

      Tinnitus (comes and goes and is described as 'white tinnitus')

      Feeling like I am about to pass out (rare occasions)

       

      There is just a general overall feeling of being unwell.  I am sure that I have missed out a lot of other stuff but a lot of the symptoms come and go and thankfuilly are not all at the same time.

      I am due accupuncture today but not sure if this helps much although it does help a little with the anxiety.

      Laurence

       

    • chris1303
      chris1303 laurence76206

      Posted

      Hi Laurence.... well, probably a similar path to you, firstly ANXIETY by the GP....yeah, ok, then LABRYNTHITIS by the ENT, then VESTIBULAR NEURITIS by the ENT after my otologist visit and testing, now I'm moving on to what looks like CERVICAL STENOSIS following my MRI's and neurologist visit this Friday (though still MS is a possible I guess) and I am fully expecting SILENT MIGRAINE too.....it seems each specialist can diagnose accoording to their specialism, they don't seem too joined up!!

      I'm sure you've said but have you had head and neck MRI's?

      I found acupuncture gave some relief but not for too long.

      Chris

    • laurence76206
      laurence76206 chris1303

      Posted

      Hi Chris,

      Yes I had both head and neck MRI.  My accupunturist seems to think that my neck/spine is slightly wonky but I have never seen anyone about this.  You are right about the diagnosis thing being dependant on the specialist you see.  The Neurologist listed three things (including VN) as he also said about silent Migraine.  The MS thing has also gone through my mind and i understand that in around 10% of cases nothing shows up on the MRI scan.

      Anyway, do you suffer with many of the symprtoms I listed?

      Cheers

      Laurence

    • chris1303
      chris1303 laurence76206

      Posted

      Hi, I've commented against the ones I don't have! THe others I do have are listed above on my previous post. I think we have a good level of croos over!

      Off balance not 24/7 (the severity varies)

      Fatigue - not so much

      Weak legs - not really

      Poor sleep

      Tingling around face/head

      Occasional tingling in back of hands and top of legs

      Occasional upset stomach - no

      Occasional nausea

      stiff neck - no

      Anxiety

      Sore eyes

      Difficulty watching some things on TV

      Can't spend to long on the PC or telephone

      Weird pulling/stiff sensation around eyes

      Occasional blurred vision - no

      Popping right ear and burning sensation

      Trembling in stomach muscles (not all the time) -no

      Occasional headaches

      Tinnitus (comes and goes and is described as 'white tinnitus' [wink]

      Feeling like I am about to pass out (rare occasions)

       

      It'll be interesting what the neuro says, I suspect some of mine is spine/neck related as I do have a definite myleopathy symptom, its called l'hermittes sign and is most often assocaited with ms though stenosis can cause it too. I have no other ms symptoms though aside dizziness and my head mri was clear. 

      I'll see what the neuro says !

      Chris

    • chris1303
      chris1303 laurence76206

      Posted

      Well interestingly I don't feel too bad today...and it is cooler and raining!! 

      Co-incidence?

    • laurence76206
      laurence76206 chris1303

      Posted

      The weather must play a part as I also don't feel as bad today.  Just about to go for my second 15 minute walk of the day in the rain armed with my brolly.
    • rocksolid
      rocksolid laurence76206

      Posted

      I know I sound like a broken record but it sounds like Vertical Hetrophoria. Check out my prevouse posts.
    • rocksolid
      rocksolid

      Posted

      Close one eye and look around. DOes it feel any better? ALso I noticed I do better on a grey day or during twlight time.
    • laurence76206
      laurence76206 rocksolid

      Posted

      Hi,  this is something I will look into.  Thanks for the information.

      cheers

      Laurence

Back to top
Prev Next

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.