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 sympathise with all. I was lucky enough through my wifes work scheme to take the private route, even so it now Sept and I've been suffering this since Feb. As some of you know I've seen ENT's, Otologist, audio scientist, Cardiologist and lastly a Neurogist.

    Thats pretty much all bases covered. The MRI's showed there was some C3-5 damage to my spine, wear and tear and old ski accident, and something that they decided was "archtiectural" and not significant. Happy Days, likely not MS. So that was the end of that. Relief in some respects but no further forward.

    Now back to square one. My only thoughts now are thyroid issues. I am sub clinically hypothyroid in the UK, in the US I would be having treatment ! 

    Still feel crap but walking helps and some days worse than others, I see no end to this just now though but at least I'm the healthiest unhealthy person I know!

    So, I shall pay for a full thyroid blood sweep, about £100 and take it to my GP if it shows anything. It has all been self diagnosis so far, my GP said anxiety....

    • Posted

      Hi Chris,

      It will be interetsing to know what comes up after you have paid for the full thyroid test.  As I have said before my thyroid results have been borderline for around 3 years now but never received any treatment.

      I went along to see my GP today to ask about seeing a blood specialist due to my slightly low lymphocyte level but he said that there is no need as all my blood is absolutely fine and my Lymphocyte level was normal for me (it has always been around 1 to 1.3), like you i am equally the healthiest unhealthy person.  I talked about how I feel on bad days and how awful it is he agreed that VN  (and similar illnesses) are awful but basically we have to suck it up (not actually his words but the meaning was the same).  After two real bad days I am having a slightly better day today.

      Unfortunately I no longer get private treament through Bupa as my company scheme ended when they dismissed  me last month so now have to go the NHS route.

    • Posted

      Hi Laurance, I will certainly let you know. I spoke to the company as they do a Dr's report if the readings are out of range. I queried really how they determined this and whether their GP was more aware of the issues sub clinical hypothyroids can have getting treatment than our regular GP's. The guy was up to speed on it and said they get a lot of requests in this area The GP they use was familiar with the problems. Not that that may offer any assistance but it might mean a stronger argument with my GP to get me on the endocrinolgist trail as none of the others have helped.....   I'm hitting the red wine tonight as it makes me feel better...until I wake up....
    • Posted

      Chris, I assume you have the same health stores as the U.S.?  A number of products available to boost thyroid health..even thyroid gland  (from New Zealand)..just a thought...a lot of hypothyroid sufferers here. Armor seems the best supplement..not synthroid..I, too have cervical damage..seems a common theme with people having balance problems..don't know how or if that's connected to inner ear!   Keep us posted re: your test results. Prayers.

       

    • Posted

      Hi fasthorse, yes pretty similar here, also I noticed you can actually buy synthroid etc on ebay in the UK !! Not that that is the answer, its expensive and over here as I'm sure you may know, once diagnosed with hypo prescriptions are free for life as is the medication. I know we're are all frustrated with the NHS but there are some upsides!

      The cervical damage is interesting. The reason I insisted on the MRI's was because i was experiencing what is known as l'hermittes sign - a common early MS symptom - and typing it into google always brings up MS. But it is also common with cervical damage/arthritis/stenosis. I may still have MS but all the physicals and work ups and mri suggest not. My age 52 and sex also make it less likely. 

      The neurologist (old school, thorough, a Scottish authority!) was quite sure I had had VN and agreed with the ENT about its longevity but he was also quite clear that cervical damage while appearing mild/sub treatment could impact on balance and create other symptoms when the mri's or other scans showed little impact physically. It's a watch and wait really he said.

      That done, I was pretty well discharged. Hence me now focusing on the thyroid blood test and a sympathetic interpretation of the results.

      I will certainly let you all know, this thread has been great support and all of you a great help and comfort.

      Best wishes to all.    

    • Posted

      Hi Chris,

      Like you I have always questioned my diagnosis of VN but come to accept this is the cause of my dizziness and many other sysptoms.  I was though over half a life ago diagnosed with ME and wonder whether this is now impacting on my recovery from VN.  It seems that a lot of people on this forum are of a similar age (iam 56) which apparently is more unusual as most people get VN before the age of 50 (although you can get it at any age).  I also questioned the diagnosis of ME when being told this 28 years ago and had to give up all my sport and have asked on numerous occasion if it could be MS (it's like i'm collecting the alphabet of illness!).  

      All these types of illness cause very similar symptoms, just to throw another spanner in the works have you checked out the symptoms to ME? But if you aren't suffering with fatigue then i doubt it will be this.  But it is also strange that a lot people with these illness also have borderline thryroid issues.  There are two other people I talk too about VN and they are both borderline Hypothyroid.

      Anyway, I have another issue to deal with today, the dentist.  broke a tooth a couple of days ago so have the app't at 13.15 today (yes on a sunday), not sure what an injection will do but was reliably told by another VN sufferer that I should be fine as she used to be a dental nurse and the injection doesn't go into the blood stream. 

      Like I said let me know how the thyroid testing goes.

      Cheers

      Laurence

    • Posted

      Hi Laurence, I've come across this link before and also with something else - Gilberts Syndrome - which I have. Supposedly a benign issue with ridding the body of dead red blood cells, bilirubin or something, but there are a few sites that actually link the liver function with the thyroid and other auto immune disorders. The liver plays a key role with the thyroid hormones and the argument is basically that a sluggish liver knocks on to these other problems. My liver on all other tests is fine. I'm more convinced on reading serious websites that the humble thyroid is key in a lot of auto immune disorders.

      No I dont get fatigue so I crossed off ME. Thankfully.

      Was is Mr Spock in Star trek who said something like   “When you eliminate the impossible, whatever remains, however improbable, must be the truth.”    ?

      Sorry to hear about the tooth!

      Chris

  • Posted

    Here's a major update.  Just a reminder, when I started this thread I was suffering from VN-like symptoms that started in June after a major illness (no spinning).  Many of those symptoms decreased in August, but other health ailments started coming up.  Near the end of August, my VN symtoms increased again, but not all the way up to what they were in June.  My job, life, and body suffered.  No doctors were able to find anything wrong with me.  Perfect hearing tests and "normal" VNG test.

    I had an appointment to see the top "dizzy" expert in Ohio.  He works for OSU, but that appt wasn't until February.  However, my neurologist sent an email to see if they can put me in earlier.  It worked.  They had a cancellation and I saw him today.  Dr. John Oas.

    It was the craziest appt of my life.  If you've ever watch Judge Judy, that's how he handles things.  Not someone I would want to hang out with, but he gets down to the facts very quickly; interogates you about what kind of dizziness you are having.

    Things got really crazy when he started examining my body.  Some things were expected.  Walking up and down the hall, looking at his finger.  But at some point he grabbed my head and started yanking my neck around.  Seeing how far he could push it to one side or another.  I have an arthritic neck, so is was very uncomfortable.  He made me try to use my neck to push his position back to see how strong it was.  He did a lot of other things with the neck, like telling me to slowly raise it from over 30 seconds.

    Then he got out his toys.  Tuning fork, Q-tip, massager, a little piece of cloth with a pattern on it, etc.  He frayed the end of the Q-tip and tickled the outside of each ear.  It was more ticklish on the right side.  He stuck the massager on various points of my ears, which produced veritgo the same way the caloric tests do.  I cried out it was so disorienting.  However, I think it showed I had a deficit on the left side.  

    Here's what he said happened.  A virus attacked my nerves in the left ear after I became sick.  Most likely a herpes virus that sits in there all the time.  He said this has caused me to walk around everywhere with my head tilted (most people would not notice it; I certainly didn't detect it).  Here's the diagnoses he listed in the paperwork:

    -dizziness

    -hypoactive labyrinth, unilateral, left

    -neck pain

    -somatic dysfunction

    -imbalance

    -poor posture

    -recurrenlt vestibulopathy, left 

    He said that I have become obsessed over my overall medical condition, and he said most of his patients do when they have a vestibular change.  He said my neck strength is bad.  I asked about what would cause ear sensations.  He said it's because I started paying more attention to my ears.  I kind've understand that, but I swear back in July it sometimes felt they were going to explode.  I asked him about the ringing in my ears; he said I would have it the rest of my life (he's very honest about thing).  I disagreed somewhat with that too, because I don't hear it as often as I did before, but I guess it's all about how much your monitor it. 

    His treatment?  He's perscribing me an antiviral medicine: valACYclovir 500 mg twice a day.  This should cut down on the recurrences.   He's sending my to vestibular rehab, where they will make my neck stronger, correct the head tilt I have, and get me used to my dizziness.  I had already taken a few sessions with another person, but these new people are more hardcore.   I am also taking a 2-hour diagnostic test in a couple of weeks.  It will include a caloric test and some type of spinning.

    I asked him what the best possible outcome can be for me.  He said you'll be dizzy the reset of your life, but you will be able to deal with it.  I thought that was a little too negative, because I had already had so much progress, but like I said he's honest.  I have also read journals documenting people's recoveries, and I know a lot of people fully recover, but maybe that's because they become in control of it.  I asked him what's the best thing I can do after walking out the door today.  He said to make yourself dizzy.  I had already been doing that by going into stores.  He said to turn it up a notch, and just bear in mind that it's not going to kill you to be dizzy.  The lizard part of the brain will want you to leave the store, but you have to overcome the fear.

    Okay, that's my update.  This is the first diagnosis I have received and the first clear plan of attack, so I feel like I'm more in control now.  I'll still come by and update from time to time.  He did not mention the word Vestibular Neuritis, so I assume I don't have it, though the cause seems to be very similar. 

    • Posted

      Good to hear you feel hopeful, Kevin..Aren't there meds to keep the herpes virus dormant?  If that was what attacked your inner ear...May i disagree with the Dr.'s analysis of the ringing and distorted sounds? Ringing left 5 years ago when i was only dealing with lightheadedness..went to a chiro for adjustments.  It all came back with this vertigo/dizziness--and I found that the neck bones had closed..not good. Back with adjustments now..and the exercises for inner ear, etc...I hope you will eventually be rid of this problem, and not have to "deal with it" for life.
    • Posted

      Kevin, glad you got some hones answers, to be honest myself i have the impression that i will always have this problem to a greater or lesser degree and it's about adapting as best i can to the situation. If i fully recover from it that will be a big plus but if i don't, at the level it is at now, i can cope.  When i first had it and was crawling around on the floor was a different matter, but at least i know there is a potential for recovery from that.  Thank you so much for the update, it really helped, i'd much prefer your specialist, hard hitting honest answers that someone giving me unrealistic expectations and then feeling it wasn't happening. Take care, stay strong. 
    • Posted

      Amazing Kevin , you have given me hope . I'm in same boat as you and funnily enough major neck issues.
    • Posted

      Yes, there are meds for herpes, and I will basically take them the rest of my life (or until they come up with something better).  It won't prevent a reactivation, but will reduce the number of reacitvations and the severity of them.  The last thing I need is to lose more of my ear nerves.
    • Posted

      Just curious, are you indicating that you will take Valacyclovir for the rest of your life or as symptoms flare up from time to time?
    • Posted

      I will take two a day for the rest of my life. I would rather not wait on an outbreak first, because by then it might be too late. Besides, it may be hard to notice an outbreak in progress. Hopefully one day they come up a herpes cure.
    • Posted

       For what it's worth L-Lysine is a good supplement for preventing herpes outbreaks...Know a hairstylist who had reoccuring herpes on face next to eyes, and she used this successfully.
    • Posted

      Kevin, I swear by the vestibular therapy, though while you're doing it, it's dizzying. As for your having it for the rest of your life...I personally think that's a bit extreme.  I have BPPV (similar to VN) and I have the "relapse" kind. This is my third bout of it--almost gone after many months--each time occurring during a crisis time of my life. Therefore, in a sense, I'll have the possibility of getting it again. In fact, during the awful humid weather, I became nauseaous and dizziness reappeared in short bouts when I turned my head too fast or lay back.

      Of course, he's the doctor. But my understanding of the vestibular exercises and the Epley exercise which I did at home is that they are trying to move particles in the ear canal that have broken off, back to their original place.  No doctor I saw said I'd get used to it.  Oh, and by the way, I have had pain in my neck for years. I'm pretty sure it's arthritis.

      My comment on the psychology of this thing is:  of course you're upset, even panicked. This is your equilibrium.

      Now yours is obviously complicated since he said he detected a virus. So I'm not sure what you can gain from my experience. Except maybe one thing:  that you don't become resigned to having the dizziness for the rest of your life.

    • Posted

      Thanks for the thoughts Marion.  I'm sorry to hear about your recurring BPPV.  For me, he didn't actually "detect" a virus; he theorized that is was one.  That's what I believe too, since I had a cold sore around the onset, and I had a small two day battle with dizziness about a year ago after a bad cold.  I'm not too dismayed about him saying I'd have it the rest of my life; I am about 80 recoved from the dizzyness at this time, so I am very hopeful about the whole thing now.  Although I have developed other heath issues, most likely related to the food poisoning.

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