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Labyrinthitis - "brain shifts"??

Posted , 76 users are following.

~Dragon~
~Dragon~

Okay this is week 5, my first ever experience of vestibular problems. It started in horrendous fashion - I was swimming om my back and suddenly thought I was having a stroke. The most frightening experience of my life, and quite frankly I'm still traumatised by it. Still haven't managed to summon up the courage to go swimming! After an hour or so of assistance at the poolside, my OH picked me up and I went off home to bed. It seemed to clear within a couple of hours so I went out shopping!

Next day I woke in a right state. It felt like I'd drunk 3 bottles of wine and had the hangover to go with it all at the same time! Doc gave me Stemetil and told me was either BPPV or lab. After a few days of awfulness, I finally realised I felt better if I moved around more - I suppose the start of the compensation process. I didn't feel I had hearing loss but did have the fullness feeling in both ears. I also felt more comfortable sleeping on my right side, and in fact had a further spinning episode just after I had laid down on my left side, so avoided doing so.

I then wondered if it was BPPV rather than lab and pestered my doc to do the Epley. They didn't do it, had to be referred to physio, six week wait, went private!! Wonderful vestibular physio performed the Dix-Halpike and confirmed I didn't have BPPV and didn't need the Epley. Why on earth my doc couldn't do that I don't know! She gave me lots of advice about the condition and showed me some exercises to aid compensation. Since then I'd felt a lot better, apart from having what I describe as brain or head shifts, and lots of pressure in my head especially when I'm tired.

Sadly, since a few days ago, I appear to now be getting worse again. Have actually had some dizzy spells laying down in bed - they had gone completely and I was feeling practically 100%. Is this what I am to expect now? Does anyone else have the strange head sensations that I described? Could I have Vestibular Neuritis rather than Labyrinthitis? When do I go back to my doc - I already feel that she dreads seeing me - have so much else going wrong at the moment! Could the stress I'm suffering because of my health problems be hampering my recovery? So many questions!! Would love to hear from anyone who's story is similar to mine biggrin. MTIA!

7 likes, 134 replies

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  • maggie34
    maggie34 ~Dragon~

    Posted

    Hello all I first had labyrinthitis almost 2 years ago and I was very ill for 3 or 4 months (it turned out to be a bacterial infection compounded by impacted ear wax) I have seen a consultant, had an MRI scan, camera in my nose and help from the baLance nurse.  I did the exercises she suggested very regularly. I have played squash on my own, turning, picking up the ball etc...all good! I still practise 2 of her balance exercisesregularly as I can still get the vertigo effects randomly e.g.at the top of stairs but time is helping. Initially, she wanted me to turn round 5 times with my eyes shut, each way. First time I tried that, it took an hour to recover! It is almost a year since that first try and I can now turn round 3 times with my eyes shut and it takes a minute or two to recover...breakthrough. I agree with her that you have to challenge the brain inorder for it to adapt. I hope this helps. It isn't until you experience labyrinthitis that you realise how debilitating it is. I think it will always be with me but it isn't stopping me doing much now.

    Good luck

  • fussyfussy
    fussyfussy ~Dragon~

    Posted

    Hi everyone, 

    I joined this website now to be able to respond to this thread. I have haed chronic vertigo and a host of sx for over 4 months now. The reason I am writing is that it is possible that some of you might have "Vestibular Migraines", aka :Migraine Associated Vertigo. Sx are very similar to Labs and Vest. neuritis. Please look it up online - it might help you.

    In England, there is a specialist that put a lot of online info, Dr. Nicholas Silver. I am in the U.S. but I thought most of you in the UK could look him up as well.

    Best wishes to all.

  • erica05
    erica05 ~Dragon~

    Posted

    Hi Helen

    I have been feeling pressure in my head very nauseous and hot for over a week. My ears also feel a little clogged and I feel like I need to vomit. When I read the words look like they are popping out at me and moving. I am very scared and don't know what to do. I have 5 kids and am currently working but I don't want to work anymore because I feel so sick. I went to the hospital and they said it was a migraine but I don't think it is. Do you think I have the same thing as you? I am going to the doctors tomorrow but I am really nervous and scared. Thanks

    • k84025
      k84025 erica05

      Posted

      Book in to see an ENT.

      It sounds similar to mine - cochlear labrynthitis.

  • kate47167
    kate47167 ~Dragon~

    Posted

    Hi I have been dizzy for 6 years I lost my balance and has taken me 6 yrs to walk and drive again.

    Had 6 years of physio and seeing the best consultant in the world there is literally nothing i don't know about a vestibulopathy and bbpv so if anyone would like to know anything plse ask

    • wise_ocean
      wise_ocean kate47167

      Posted

      Hi glad that you've overcome a lot of your difficulties. Did you see a consultant in the UK? If so, could you please provide a name and location/hospital? Was it the physio that helped you overcome BPPV? Thanks
    • kate47167
      kate47167 wise_ocean

      Posted

      I couldn't walk without help the nerves were stripped to new born baby status so I had to learn all over again and it is hard. There are soooooo many factors that bring u good days and bad days but with the right help your good days will will over take the bad days.

      I am dizzy by night I rarely go out at night no where busy, I don't drink, always have 2/3 pillows, don't have a bath because of the movement of the water, swimming is hard afterwards not during, hills r hard, one vrt excercise was to walk up and down a hill with eyes shut - was pretty interesting.

      Any effects to the body will have such a bearance so tiredness is a huge huge player, stress, a night out in a busy place, medication, for instantce starting my anti depressants oh my god feel like have de compensated so much, anti biotics another bad one so much its un true.

      I could write and write and write about moving floors, slanted floors, walls that look like they are breathing, marsh mallow feet, etc and am happy to do so.

      I have made great friends with fellow dizzys and it helps so much

      Emis Moderator comment: I have removed the link as it was to a site unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • wise_ocean
      wise_ocean kate47167

      Posted

      Your link has been removed and I can't work out how to send a private msg (I can't see the encelope icon)!
    • tracy47141
      tracy47141 kate47167

      Posted

      Hi there reading your post I have been suffering from pressure over my nose like and a tightening feeling as if my nose is going to explode my ears are very full and dreadful tinitus and foggy brain takes me a while to remember things where as usually I am very on the ball dizzyness comes in zaps !!! Feels as though I may pass out and body feels heavy I did think it was to do with my thyroid as I have hashimotos and am iron anemic but have been assured by private specialist that this is not the case I have been diagnosed 15 years ago with vestibular disorder as my balance was out, but never felt quite like I do now does is sound like labyrinthitis ... Think I will have to go to GP but a bit worried as they are not very good xxx
  • dragon1004
    dragon1004 ~Dragon~

    Posted

    I'll try again, phone playing up, switched to the tablet!! I started this thread almost 3 years ago. Something rather strange has happened to me since yesterday!! I had another attack, as strong as the first, this time in the spa pool not the swimming pool. Both attacks happened whilst I was "laying backwards", although this time there was definitely no water could have got into my ears...did suspect this might be the case first time, but had my fingers in my ears yesterday!!

    Was totally devastated that it had struck again. My sinuses had been pretty blocked prior days so assume the virus has again got into the inner ear. Was extremely sick and unsteady all day yesterday, and was dreading laying down in bed. Did so, and turned very carefully last night and woke still feeling quite unsteady. Par for the course I guess.

    This is where it gets strange. Knew from last time that the earlier you get moving again, the better for the compensation process. Have really fought against it all day and moved around the house as much as possible. Have a little ear pain and ears are still feeling full but I'm actually feeling quite steady already!! Can it really have disappeared this quickly?? Suppose I might be jumping the gun and will pay for it in the morning...

    So has anyone else had a second bout, not just the occasional dizzy spells that most of us get occasionally, but a full blown knock out attack?? Is it usual for it to go almost as quickly as it arrived? I really thought I was in for weeks of torment again!

  • heather40509
    heather40509 ~Dragon~

    Posted

    Hi

    I was first diagnosed with Labrynthitus 1 year ago and have the odd spell of dizzyness, but one week into 2015 it has come back.  I have now been off work for 5 weeks and am still getting very dizzy and sick.  I cannot drive am signed off work.  I am getting very low and am strarting to suffer from panic attacks and loss of confidence.  I'm sure my work colleagues think that I am putting it on but unless you have had this condition noboby knows how it totally takes over your life. 

    • linda_96682
      linda_96682 heather40509

      Posted

      Hi Heather, 

      I was diagnosed over a year ago as well. Thought by now I would be back at work. Like you I can not work or drive. Quick movements make me very dizzy. Laying on the right side is not good. Your comment about your colleagues is so true. I am at the point of not knowing what to do. My eyes hurt all the time and the headaches are getting worse I am on an anti depressant now. Hope you start to feel better soon!

  • maggie34
    maggie34 ~Dragon~

    Posted

    Hello everyone

    So sorry to hear of everyone's problems! I don't feel ill anymore after the initial awful symptoms 2 years ago and I've had the usual medication, MRI scan etc. I just wanted to ask if anyone else had labyrinthitis through a bacterial infection rather than a virus? Heaven knows how i contracted it, from a swimming pool perhaps? Also I get the occasional dizzy feeling now but my hearing has been affected. Sometimes it is OK and sometimes it isn't. I was visiting friends this weekend and could see that there was music playing very low but couldn't hear it at all. My husband says that sometimes I am complaining that the TV is too low and at other times too loud. Has anyone else had these problems

    • dragon1004
      dragon1004 maggie34

      Posted

      Hi Maggie, glad to hear that you're mainly well!! It is recognised that lab causes hearing problems, although mine is mainly tinnitus. I'm not sure that it's that easy to tell whether it's viral or bacterial, I guess you get a fever if it's bacterial? Much the same as a respiratory virus can be bacterial, I suppose it depends, though I think it transfers to the inner ear internally rather than in through the ear as a water-born virus would. I'm no expert though!!

      I found that loud noises would make feel a little dizzy in the early days, and I too get complaints from the OH about the volume of the TV. After my latest brief episode I am going to ask my GP for a referral to ENT as although a hearing test is not showing a significant loss, I feel as though I am not hearing as I used to. I also get brief episodes of BPPV now, and do the Epley manoeuvre.

      Have you had a recent hearing test?? You can get one for free in a well-known national opticians!!

    • maggie34
      maggie34 dragon1004

      Posted

      Hi Dragon Thank you very much for your reply. At the time, about a year ago now, the NHS sent me to the balance nurse, which proved really helpful and also to the hearing nurse but I feel that I was fobbed off really with the hearing nurse i.e. not quite bad enough for a hearing aid but  perhaps at some stage I should go to lip reading classes (and no need to bother us again!)!. I will go and get that hearing test, a good idea and maybe go back and bother the GP. By the way I didn't get any kind of fever just that my ear started to get itchy. I was in India for 2 weeks and on the plane home bent over to put headphones in when the horizon went diagonal one way and then the other. That was the start of it.

      Maggie

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