Been diagnosed with labrythinitis

Posted , 12 users are following.

Hi all

I hope this forum is still active I live in Australia Brisbane and have just been diagnosed with this. I've had it for 3 weeks now and I'm questioning how long it will last. Doctor has said if not better by Monday to go see him for a referral for an ENT specialist but I need to go to work Monday. I've had 3 weeks off already and it doesn't feel like it is going away. My biggest thing apart from getting ear aches and headaches is my balance is completely gone. I fall over when I walk and I can't stand straight. I thought this would be over in 3 weeks but I'm worried it might last a while. Has anyone heard of this only lasting a couple of weeks? I'm worried that it might last months or years and this stresses me. What do you guys do to deal with this? Also is there any support groups around for this? I feel like it's all in my head as I look fine, but then I'll have an episode of dizziness and need to lie down.

I'm kinda frustrated as I don't feel any better than I did 3 weeks ago.

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  • Posted

    Hi there hopefully you will get better soon it may take a while though your brain has to retrain it self physico therapist is a greatway to start other tests sshould be taken to make sure it is nothing more serious inner ear to really hard to diagnose good luck to you we are here to talk to
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  • Posted

    My advice is to go to the ENT if they cannot help you maybe a neaurologist - your balance is off - sounds like your ear, but a neaurologist can check to see if something in your brain is not communicating properly.

    Keep us posted

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  • Posted

    THis last episode lasted a month, but was a gradual recovery. I began taking liquid minerals to boost bone health..., b-vitamins, and Vit. D Dr. on radio said the flood of balance problems came from poor bone health..and there are tiny bones in the inner ear that can lose their function with bone loss.  Nasal rinses with saline water can help a frozen eustachean tube to move, and that is sometimes the cause of vertigo. Exercises by Dr. Carol Foster (half somersault) were also a help. I wish you well, Brendan...and there are other forums on this site discussing this subject...btw, have you had your neck checked? many of us have cervical problems..I'm going to chiro for adjustments, and very glad to do so.  Take care. Prayers for your recovery.
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  • Posted

    Sorry to hear about this Brendan. Definitely go to ENT so they can make sure of the diagnosis - you'll see from this site there are many causes of vertigo and dizziness. And hopefully they can offer some treatment. Are you on any medication? I'm afraid labyrinthitis can last a while. Using a walking stick sometimes helps a bit. Hope you go on OK.
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  • Posted

    Hi Brendan. Sadly I am a bit of an expert insofar as I have suffered two bouts of this scary condition in just over two years. My first bout started with me spending 3 days in intensive care here in Geelong and then a further 8 weeks to fully recover. This last bout started 10 weeks ago and I am just about over it; the timing is not good news for you I know but reading others' stories, I seem to be fortunate. I have maintained a strict (as possible under the circumstances) exercise routine but be aware that depression is a natural side affect. I am not trying to diagnose what you have but if it is Vestibular Neuritus, then the associated virus has destroyed the nerve links between your ears and eyes, and your brain and these neural pathways must be remade. The brain does this by itself but certain exercises may hasten your recovery, but they also make you quite ill during the process. I am so sorry that I do not have much better news for you. I shall be flying over you on Wednesday on my way to a couple of weeks in Cairns and Townsville, so as you can see it is not the end of our life as we know it, just a bloody long nuisance. Kind regards and wishing you wellness as soon as possible. Jon (Torquay, Vic)
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  • Posted

    Hey thanks everyone

    Appreciate it. I've decided not to go to work tomorrow and take as much time as needed. I'll get a referral tomorrow to go see an ENT specialist. Don't know how others go if they continue working with this, but i think it's probably best for me not to, until I'm recovering.

    Thanks again. I'll let you know how I go when I can get an ENT appointment.

    Cheers

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  • Posted

    Hi Brendan. I haven't been diagnosed with labrythinitis but I have been dealing with the dizziness issues since March. You can read my link under the Cholesteatoma thread. This forum has helped me tremendously. Hang in there. You've got people who understand here. Mary
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  • Posted

    Hi Brendan. Don't despair as I believe that the recovery from labyrinthitis  or vestibular neuritis (same symptoms but no earache with VN) can be quite long. I had an attack of VN last Christmas. I was violently sick and the room was spinning round. I couldn't function at all. The doc gave me tablets to get rid of the sickness but I just had to wait for the spinning/dizziness to go. It took about two weeks and I felt back to normal. Six months later, and after a bad sore throat, the symptoms came back. I took a couple of the anti sickness tablets I still had and that cleared up in a day or two. However, the spinning, lack of balance, dizziness and general feeling of exhaustion stayed. That was over 12 weeks ago and, although I am better than I was, I am still suffering from lightheaded ness and room spinning. It is worse if I look up or down suddenly or if I turn over in bed. Some days are worse than others but I have not yet had one whole day free from symptoms. I have lost a stone in weight as my appetite disappeared for a couple of months. I am still feeling tired but am not having to have a lie down every day which I did for 7/8 weeks. Like you, I get times when I feel down and think this will last forever but I take comfort from the fact that I no longer have bad tinnitus; that lasted for a month, and that I am better than I was at the beginning. It is a depressing condition but most people seem to recover even if it takes a year or so. Nobody in the medical professions seems to be able to offer any help. It just takes time. I find that thinking about how I move and doing it slowly helps to control the spinning. Hope this offers you some comfort. Keep smiling!
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    • Posted

      It's good that you are at least somewhat better. 12 weeks is a long time to suffer. i understand the looking down or sideways, and reeling as a result..I have yet to do the final cuts on putting down kitchen floor, as it causes the vertigo to resurface. I had no tablets--just my Dr.s adavice to do the neti-pot rinses to help inner ear flexibility. I realliy think taking trace minerals, and having neck adjustments helped tremendously, too..and i walk daily..even if it seems a huge task...i pray your balance is restored soon.
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  • Posted

    Hi Brendan, When mine started they said I had labyrinthitis.  When it didnt go, I had to have MRI scan and see ENT.  It wasnt anything serious but ENT dont know much about it.  I then got referred to neuro surgeon who said it was nothing to do with my neck, then I saw neurologist who diagnosed me with silent migraine, but I had had it 9 months by then.  Ive had endless medications but nothing has worked up to now.  Its now been three years.  My symptoms are the same as yours but having said that, it can still  be different things.  I really hope yours doesnt last this long, luckily Ive managed to carry on working as I work part time four days a week and have found keeping going actually makes you feel better than giving in to it. You just have to get over the scary aspect of it.  Anxiety makes it worse and it all causes depression. I did have a couple of panic attacks in the early days but can live with it much better now.  Bright lights get me and noises seem very loud and hurt.  The dizziness is the worse symptom, but I also have pins and needles on the top of my head. I get headaches in the front of my head and at the base of my head at the back.  My eyes feel like they are being pulled out on occasions. They did used to jump about but that bit has gone which is good.  My jaw hurts and so does my cheek.  If you keep moving it helps your eyes and brain retrain themselves but you do feel wiped out.  Ive been told it will resolve itself but three years is a long time.  I personally think my diagnosis could be wrong.  Betahistine has worked for me on other occasions and got rid of vertigo but hasnt done anything this time round.  We all found ENT were useless but you need to see one to try and alleviate any serious problems.  Good luck with it.
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    • Posted

      Hi Paula when I went and saw a specialist in Brisbane he recommended that it could be silent migraine but he did the epily manoeuvrer and bang the spins came on with the nystagmus in the eyes.   I have BPPV! 

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    • Posted

      Hi Donna, just watched the epley manoevre on utube, I vaguely remember having that test three years ago, and it was negative.  Ive just tried it myself and Im def not dizzy with it.  However, did give myself head pain on the left side and stuffy sinuses and neck pain.  No problem with my eyes though.  So thats one thing less.  All the pain is on the left side, so I still think its a neck issue.  I cant move my head round as far to the left as I can to the right but thats how Ive always been since the car crash in 1973.  Im glad youve got a diagnosis, at least you can get on with getting right.  I wish I knew what was wrong with me that Ive still got it three years down the line.   Thanks for your reply.  Good luck with your BPPV !
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  • Posted

    HI Brendan,  I am in Bundy and Im in my 3rd month of not working.   I have being diagnosed with BPPV and after many doctors, mri and scans it seems no one knows what to do with you. 

    I started to spin out, failing to walk without stumbling puppet like (thunderbirds).   I have vomited when the spins are bad and unable to go into the shopping centre without feeling stressed and wanting to collapse hanging on tight to the trolley too scared to look up or down the aisles etc.   Fluro lights are a big no, no with long corridors reflecting unnatural lights.   

    Computers seems to be limit so im typing this fast.  You are not alone and yet we feel we are.   I recently saw Dr Lomas in Brisbane who has confirmed that its BPPV and now heading to the Balance Clinic in Sydney at the RPA.  

    Your work is depending on what you do.  If you work with machinery or high places you could be in trouble.   I felt great one day only within seconds of spinning uncontrollably to the point of screaming for someone to help me/catch me and in bed for 3 days after that. 

    As to see Dr Lomas as he is a specialised in this field and I do know there is a balance clinic/physio in Brisbane , it’s just not as accurate as the one in Sydney as they use the Omniax Machine that has staff of experts in this field.  However the Brisbane one I believe are good and close by for you to go and see.  Look up Omniax Chair/Machine on Google for more information.  However I have BPPV (vertigo) where yours could be entirly different until its confirmed.  Drop the GP and ENT unless they specialise with Vertigo hence thats why my GP sent me down to Brisbane with support of my physio to see Dr Andrew Lomas.  

    Best of luck !  Remember to youtube BPPV AND Vestibular Neuritis as you never know, also the Omniax Chair - I believe Dr Mariam Welgampolla - Sydeny is the best in the field and Im not taking any short cuts now I know this is not going away too fast.  

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