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Help, new to labyrinthitis and don't know how to cope

Posted , 7 users are following.

Schampie
Schampie

on the 6th march i passed out for the first time in my life, since then i have been constantly dizzy, sickness, numb face and blurry eyesight with no energy and always very tired with not sleeping. have had an MRI scan which has come back all ok, are being sent to see the reabillition balance team at the hospita when appointment comes, is there any hope of getting better from this, doing exercises which ENT doctor gave me, but feel so alone and now depressed. cannot drive or go out as feel so ill, please if anyone has some words of wisdom, help!!!!

0 likes, 25 replies

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  • DizzyDarren
    DizzyDarren Schampie

    Posted

    Hello Schampie. First of all don't dispair, you are in good company here. Layrinthitis is vile. I've was diagnosed with Vestibular Neuronitis which I believe is the same thing but without the ringing (Tinitus). Have a look around this forum which my give you comfort knowing that you are not on your own with this. 
  • gillian76726
    gillian76726 Schampie

    Posted

    hi Schampie, well not sure about 'words of wisdom' as all of us on here feel the same!!, in varying degrees.  first off can you tell us what the dr has diagnosed you with?  When it first hits it is pretty awful i know, and although i, along with others, have not got rid of the dizziness/vertigo, or whatever you want to cal lit, completely, we have learned coping mechanisms.  Also i think the really nasty stuff at the start does wane a bit if that's any comfort.

    Get yourself, as i say to others, onto some decent supplements, Vit D, B complex including B12, Co enzyme 10 is great for energy levels, (don';t need to buy the expensive one on this as advised by my holistic dr, but get the ones in Tesco's believe it or not - 30mg).  Vit C, 100mg.  Also omega 3, cod liver oil or whatever (i get those either in chemist or supermarket). Avoid 'multivitamins' as they do not have the values in them, and are okay for general maintenance, but not when your body needs boosting up. The D and B's i'd get good quality ones, otherwise it's a waste of money - i personally take liquid ones of these as they last longer and better than pills.

    Go on Facebook, Veda page - great info and support on there - it's American - but lot of people with good advice.  Wish i'd known all this when it hit me 3-4 years ago - i had to find it all out the hard way!!  Good luck and keep us posted.  But doing something positive for yourself actually helps.

    • Schampie
      Schampie gillian76726

      Posted

      Thanks for getting back to me, Dr has said it maybe labyrinthitis, have been told it will get better but it seems to go on and on. Doing all the exercises three times a day that the ENT dr gave me, thay do not say on the sheet how many of each exercises to do or how many times a day. Try very hard to work through this by doing the bookwork/housework/gardening but it is very hard. I will try the bit/supplements as you suggest and iam sure being in touch with other people in the same boat will help

       

    • Babz36
      Babz36 Schampie

      Posted

      I've not had Any exercises yet or seen ENT! Am looking at going private xxx
  • Babz36
    Babz36 Schampie

    Posted

    Hey! I've been dizzy since 30th March this year. Just hit me out of the blue. I was in bed for a few days, feeling sick and horrific. I'm now up and about but CONSTANTLY woozy. I feel drunk from the minute I wake to the minute I close my eyes at night. My anxiety is horrific and I'm pretty much avoiding going out anywhere. I'm a single mum to 4 kids, luckids they are older and have been amazing. I'm still waiting to hear from ENT and my Dr just keeps giving me medication and fobbing me off. I've been referred for CBT as well. I'm not taking any vertigo medications as I've read they can slow recovery right down. Just taking my anxiety meds and painkillers for the horrific headaches I keep getting. You are not alone, it's a horrible thing to suffer with and I really feel for you xxxx
    • gillian76726
      gillian76726 Babz36

      Posted

      you mention horrific headaches Babz.  Did you ever have headaches or migraines before??  Just that there is a condition MAV - Migraine Associated Vertigo - youmay want to look that up.
    • Babz36
      Babz36 gillian76726

      Posted

      I've always suffered with headaches anyway and because I'm constantly woozy it's doubtful to be MAV anyway xxx
    • gillian76726
      gillian76726 Babz36

      Posted

      me too - always had really bad ones pre menopause, and am permanently woozy, but the audiologist insisted it could be!!  i proved him wrong, but it took me 18 months to get to that!!  I am pretty sure you probably,like all of us, have avestibular problem of some ,kind, triggered by who knows what!
    • Babz36
      Babz36 gillian76726

      Posted

      Most likely problem is labyrinthitis caused by a virus according to my dr that's damaged the vestibular nerve. I'm seriously thinking about going private to try to rectify it rather than wait for the NHS! Xx
    • gillian76726
      gillian76726 Babz36

      Posted

      yes i have thought about that too, but it annoys me as i cannot afford it at all, and would have to go into debt big time to do it, and then if you need an operation, that would sky rocket the bill!!
    • Babz36
      Babz36 gillian76726

      Posted

      It's a neuro physio place in Manchester who treat vestibular disorders all the time. With physio and exercises no ops! It's £120 for a vestibular assessment which takes an hour and a half and then £50 each treatment after. I'm VERY tempted! Xx
    • gillian76726
      gillian76726 Babz36

      Posted

      i bet you are - i do understand believe me. What is name of this place - i want to check it against one here in London i am thinking of going to (if i can rob a bank!), and see if they do the same testing etc. (it's the University College of London Hospital  - Department of Neuro Otology - a NHS hospital, so it could come under referral, if, if, my gp would do that, but i doubt it (they don;t like referring to london hospitals as they have to pay for it!!) - tha's why i was dead against the gp's getting their hands on the money!!
    • Babz36
      Babz36 gillian76726

      Posted

      It's called Manchester neuro physio. I spoke to one of the physics and they know their stuff xx
    • gillian76726
      gillian76726 Babz36

      Posted

      do they do the Cawthorne Cooksey exercises?  If so, i've done these and they did nothing for me.  Do they do anything else - don't want to put you off, just don't want you wasting money if that's all they do as you can download them from internet.
    • DizzyDarren
      DizzyDarren Babz36

      Posted

      I don't mean to be rude ladies but these people may know this stuff but can they fix this stuff. Does this neuro physio have a list of happy customers that they can put you in touch with? You wouldn't get a builder to build you a house without seeing some of their previous work first would you? Be careful please. We are all so so desperate to find someone to fix us we are vulnerable to making expensive decisions. Get proof of successful results first :-)
    • gillian76726
      gillian76726 DizzyDarren

      Posted

      don'  tworry Darren, i won't be going private unless i win the lottery! but i am curious as to what they do differently to NHS, that is why i mentioned the Cawthorne Cooksey exercises, as you get these with nhs physios.
    • DizzyDarren
      DizzyDarren gillian76726

      Posted

      To be honest I am equally curious and I wouldn't mind knowing what they do differently compared with the NHS and I wouldn't mind seeing those testimonials as well. :-)
    • Babz36
      Babz36 DizzyDarren

      Posted

      Send them an email and they'll send them to you x
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