Labyrinthitis ?? advice please

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Dear all, would like some opinions and dvice please.  Have had labyrinthits (so the dr says) for 4 months.   Had two days of dizzyness when everything span around  when i got out of bed and 2-3 weeks of mildy dizzy symptoms.  I also had cold-sore throat symptons and blocked, painful ears (right ear mainly, but left also).  After 4 months most of my symptoms have gone.  I feel a bit lightheaded and mildy dizzy once or twice a week, and have a 'head shift' about 10 seconds after i lie down...when i feel like things are about to spin...but they dont.   I also seem to get tired easily, and when i get tired I feel more lightheaded, again as if if i am about to get dizzy....but i only feel mildly dizzy.   MY amin problem is my ears.  My left ear is almost ok.....i get a few mild shooting pains in it now and then and every other day there is a dull ache in it, but the right ear is worse.....it feels blocked and full, i get pains in it, and tinnitus.  Strangely my ears feel completely different one day to the next......one day almost ok, the next very blocked.....this even varies fronm hour to hour.   I am wondering if this ism osmething that is likely to get better........it has improved a lot in the last month, but will it get back to 100%    Also am wondering if the cold-sore throat sympotms which have come and gone over the last few months are 'normal' for labyrinthitis.   Lastly, am wondering if it should be ok to have a beer or two now ?   I have been teetol for the last 4 months. but could really do with a beer.....will it do me any harm ?

 

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  • Posted

    Hi,

    I was diagnosed with Vestibular Neuritis last yr on my due date with my baby! They thought I may have had a stroke because I was vomiting uncontrollably and the dizzy spells/spins were completely debilitating, to the point where I had to lay in bed completely still or I felt like I was falling. After I went to triage, got an MRI, and given fluids interveniously, they sent me home with anti nausea meds which basically just knock you out. I was napping 2-3 times a day (not due to pregnancy) and bed ridden for almost two weeks. It slowly got better after that. This was almost a year ago (April 27th 2014 was when I went into triage). I still get bouts of vertigo regularly. I notice it is worse when it's hot, if I spend too much time outside on a windy day, an in a large space (like a shopping mall), and if I become anxious. Also, I recently read the herpes virus can cause VN. The cold sores you're speaking of could be a result of VN or vice versa. No one told me this when I was diagnosed. I would say that the length of time of this infection is different for everyone. Mine lasted over two weeks, I had to give birth when it was still in its worst. The body is an amazing thing! My best advice is not to push it, to rest as much as you can. I can't personally imagine having a beer while going through the symptoms of VN and the possibility of it adding to the feeling of the spins is unappealing. I would speak to your doctor, seeking the opinion of others on having alcohol during the length of this infection is probably not the best idea. I hope you feel better soon. For now, while you can, rest as much as possible!

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  • Posted

    Hi Mark

    Go for a drink I say! i have had lab for 9 weeks it's sounds like you are at the same stage as myself.i still get a little light headed and my vision is not 100%.

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    • Posted

      Hi Keith  Yes, my vision is abit off too.  I still feel im another couple of month from being back to normal.  Have you had anything alcoholic whilst under the weather with this thing ?   I have heard a number of sufferers say that they found it actualy helped

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    • Posted

      Hi Mark

      Yes had a few drinks and I was fine no problems at all. There is loads of stuff on YouTube regarding excercises epley it's worth a look if you haven't already.

      Good luck (I would say I am about 95% better I think we all need to remember it's only a viral infection,there is a lot worse things out there if in any doubt look up the motor neurone forum on this webpage)

      Cheers-enjoy your beer!

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  • Posted

    Hi Mark, Ben here.

    Beer?  Although I don't see how it could hurt, I for one, will not touch anything that will alter my state of consciousness, for I need all the awareness that I can muster all the time unless I'm sleeping.  But, that said, that is me, not you.  If you are not as screwed up as I am from this thing, go for it. Perhaps you only miss the taste, in that case, isn't there a low alcohol beer or non-alcohol beer?  Maybe they don't taste as good ( or more likely they taste like $#!+) I don't need any help feeling drunk or high,  I feel like I just walked out of a bar after happy hour all the time I'm awake.

    On the issue of hearing, ear ringing and pain, Yes.  All of those symptoms are accumbent to Labs or Vestibular Neuritis.  Ear fullness or pressure, shocking pains or jolts are part of it.  It is a very sensitive area and the virus or bacteria invading while your body  attacks, as part of the mechanism heating it up and filling it with white blood cells, causes a hostile environment that surely casues pain.

     

    As far as the cold or sore throat goes, I would say it could be the source, -or- because your immune system was working on it, your body's ability to fight off something else or something new was reduced and that something else got started in your inner ear(s).  The doctors don't seem to know much about where it comes from, so the jury is still out on that one. But, something like how an allergy, causes constant irritation makes a prime environment for an invader, the cold virus may have spread more easily to other parts of your body including inner ears while all the fighting was going on. Remember, this disease is not a glamorous one so far, and it doesn't garner the headlines and the doctors are not very aware of it yet at all.

    100% ?  Don't have enough  data gathered for that one.

    Well, that my 2 cents worth.

    Good luck and I hope you do recover 100%, I know I am hoping I do.

    Ben

     

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  • Posted

    Hi Mark

    Ive had the dizziness, weird ears, thing for now two and a half years.  Ive been diagnosed with silent migraine, but I dont think it is.  Had millions of tests and endless medication nothing works.  The thought of anything alcoholic making me more dizzy is out of the question, but thats just me.  I find it makes me much worse and very hot.  I think it does something to the blood vessels that isnt good for the dizziness and makes it worse.  But its your call obviously.  If it makes you relaxed and less stressed than thats got to be good.  Try one or two at home and see how it goes than at least youre not out struggling with extra dizziness trying to get back.  All the best. 

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  • Posted

    Forgot to say.........my ears feel fine when I am lying down.....but after I get up,  sading or sitting they start to feel blocked ...is this normal ??

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  • Posted

    Hi Mark,

    I had problems that are probably (so I've been told by the Consultant) due to viral labrynthritis. I had two weeks where the symptoms were so acute that I lost a stone due to the nausea induced by the dizzyness. I also had sudden and profound hearing loss in my right ear. The damage to my innner ear is permanent, so I am now, 3 months later, still unable to hear anything at all in my right ear. However, like you, I have developed tinnitus and aural fullness. As you say the symptoms can vary in agression from one day to another and at different times. I am tring to learn to ignore the tinnitus, and the fullness in my ear can be quite uncomfortable. 

    I still get dizzyness but not like it was at the beginning (or not very often). My Consultant has encouraged me to be drug free so that my brain can retrain itself to manage on only one ear in terms of balance, but very kindly gave me some medication for travel, as I found I was extremely sick when using the Isle of Wight ferry on a calm day (I have to do this trip once a month to help with sick parent).

    I'm currently on a long haul holiday, and flying was quite a challenge, but the drugs helped a lot.

    I also have something caled hyperacusis, which you may or may not experience. This is an oversensitivity to sound, which ironically I have in my deaf ear. It means that any sound in the environment causes a noise akin to rattling a tin ful of keys loudly by my ear. Sometimes this is very painful, so I tend to wear an Earpeace earplug if I have to be somewhere noisy. It doesn't stop it, but makes it more bearable.

    Tinnitus I've been told is incurable, but that you learn to live with it over time. I have cut out caffeine in an attempt to lessen the effects. I did stop drinking for a long time because of the adverse effects on balance and tinnitus, but I have managed a few drinks now and getting  used to it. I have learnt that gin and tonic is a complete disaster, causing the tinnitus to spike dreadfully, while wine seems to be fine. I'm not a beer drinker, so you'll have to try that one for yourself.

    Dizzyness is worse in the dark, it has to be said, so take care if drinking at night - especially if you have a gravel carpark to contend with (many pubs do, I have found to my embarrassment).

    Hope you start to feel better soon.

    Gill

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    • Posted

      Hi Gill

      I am also coming to my 3 month mark.Glad to here about your recovery! Can I ask if you have managed to go back to work?i am due back now but very worried about my symtoms coming back once I return.

      I work in a bank and on the computer most of the day unfortunately I do not have an option to come off the computers.

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    • Posted

      Hi Keith,

      I hated being off work and was worried about commmitments that others couldn't do, so I had a phased return. I work as a Deputy Headteacher in a large junior school and was worried about the newly qualifies teachers that I  look after. So my initial return was for a half day just to meet with them. This was back at the very end of January, and I was distinctly wobbly and disorientated. The hearing loss was also difficult to deal with, as I find it almost ipossible to hear with my good ear when there is any background noise.

      The following week I did about 3 half days - but with no real contact with the children - just catching up on office work, and very much looked after by my head teacher. Then over the next four weeks I gradually increased the number of parts of days. After February half term we had a meeting with occupational health who suggested I could up my days to full time - but not he crazy full time hours I usually work (ie 7am until 7pm), but that I should do no more than 7 and a half hours a day, with no evening meetings, and teaching limited initially to group work.

      I've been really upfront with the children and staff and explained exactly why my hearing is poor, what they need to do to enable me to hear when I'm teaching, and why my balance is so poor (I didn't want people thining I was drunk). 

      It's been really tiring, and I have been going home at 4.30pm sometimes and just sleeping all evening, until the next day. I have pushed myself quite hard with VRT exercises downloaded from the iternet, as I still haven't seen the physio therapist. I was also allowed up to a day a week working from home, and also allowed time off if I felt to unwell to either drive or to function (as sometimes my vertigo takes me by surprise). 

      I'm still not functioning briliantly at work, but everytime I sit down with the head to discuss if this is the right job for me now, he has encouraged me, and said that I'm doing fine (I just feel like I'm only operating at about 60%).

      It's the Easter holidays, and I have two weeks - which we are spending in Bali. This was my aim to work towards being stable enough for a holiday, and although I've had a few dodgy moments, all the R&R, very cheap massages good food are doing me the world of good.

      You just have to take it at your own pace.

      Good luck. :-)

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    • Posted

      Hi Keith.  I have just returned to work.  Found it very tiring, but that should improve (?) as the brain adjusts. I had no relapse.   I have had no problem using a computer, so hopefully you will be ok too....I hope so.  I dont see that the symptoms are likely to return......maybe just a tad when you get tired.  Do you find that when you tire you feel a bit wobbly....I still do  ?  I think once you are over the worst of it this shows that the brain has compensated, and so should continue to compensate once you step it up to return to work.   I did find that I was a bit paranoid about catching a cold or flu ( I work in apublic library)  as I have found that when I get a cold I do take a dip,  but this has improved too....I have had 3 or 4 colds in the last 4 months and each time have not felt so bad.  fingers crossed Keith

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    • Posted

      Hi Gil

      Many thanks for your reply.  Gin and tonic is also one of my drinks....but I think I will put my bottle of blue saphire to the side for the moment.  I am going to provence in September so hope to be well enough by then to try plenty of wines.  Dis you find any adverse reaction to your balance when having a tipple...or did you feel bad the next day....can you describe how you felt please ??  Alcohol is very much part of my life.....I am not a boozer,  but write a food and drink blog which includes reviews of belgian beers, so not being able to do this saddens me.  I also like a couple of glasses of wine on a saturday when i go out for a meal,  again as part of my blog.   Like you I have stopped drinking coffee as I found it made the tinnitus worse

       

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    • Posted

      Hi Mark

      Do you ever get the feeling that you are spacing walking ?i get so lightheaded it's so annoying I feel like I am going to fall over sometimes.

      Due back on Friday after 9weeks off and just my luck got that space walking feeling again!

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