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Labyrinthitis??

Posted , 31 users are following.

paulette1966
paulette1966

Hi, I have been reading witht interest some of the comments posted by some people regarding vertigo and dizziness.  My story started back in March of this year, I was watching my son play football and whilst driving back home I suddenly became extremely lightheaded felt like I was going to pass and my partner took me to A&E, the symptons have never gone and way have have only got worse, went to the doctor whom said that it was Labyrinthitis upon reading up about this condition it seemed like I had allt he symptons, one of which was anxiety which I have never suffered with before its is now five months on and I still have the dizzeness and lightheaded woozy feeling, the last few days have felt a little clumsy and off balance, I have ringing in my ears and popping some days and headaches I was prescribed diazapan for anxiety and then the doctors put me on citalopram which I only took for 4 weeks this didn't seem to help much so decided to stop taking them I haven't taken any medication for a week now as I wanted to see how I would get on without apart from panadol for heachaches, I finally have a referral to the ENT department which is in a couple of weeks time, I have just about had enough of feeling crap, before all of this was an active 47 year old have two children and recently got married back in June I just want this to go away and want to wake up in the morning feeling normal, I would ilke to add that I don't have any problems sleeping I best when still can anyone else shed any light on things thank you!

 

1 like, 82 replies

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  • crystal29909
    crystal29909 paulette1966

    Posted

    Hi Paulette, I can relate. Mine started on June 3rd it started as a warm sensation go up the right side of my neck like when you pull a muscle. Within minutes I felt a little dizzy, as the week progressed so did the dizziness. By the end of the week I was in the hospital for 3 days with every test and scan done only to determine that it was labrynthitis and it would go away in 4 to 6 weeks. I was referred to an ENT and did vestibular therapy. The therapy helped immensely with regaining my balance however we are now into October and the dizziness is still there. It's not nearly as bad though and even on some days I rarely notice it but it isn't completely gone. I'm still convinced that it has something to do with my neck but every dr. I spoke with has said otherwise. Like you sleeping or sitting still like watching tv doesn't bother me. It's when I'm up movingly around. I took medicene the first week and it didn't do much good. The ent advised that I not take it because it will take longer to recover. With labrythitis your inner ear is damaged and it throws off your center of balance so your brain needs to reevaluate its new balance and by moving around it helps do that.ive personally noticed that lack of sleep, stress and too much caffeine makes mine worse. Best of luck, it does get better with time and therapy helps a lot.
    • paulette1966
      paulette1966 crystal29909

      Posted

      Just wanted to put another question out there I find when I have a glass of wine it makes me feel better is this because it takes your mind off how your feeling or its like a relaxation drug, not good to become on a glass of wine or two of an evening not a good idea but it helps anybody else drink alcohol whilst feeling like they do?

       

    • Babz36
      Babz36 paulette1966

      Posted

      I find alcohol makes me worse but it's whatever works for you xx
    • paulette1966
      paulette1966 Babz36

      Posted

      I'm okay whilst enjoying my glass of wine but the next day I suffer badly think I will leave off it for a few weeks and see what happens drink plenty of water instead, I feel awful today, listening to relaxation anxiety therapy music helps !

       

    • jess13508
      jess13508 crystal29909

      Posted

      Hi, I know this post was sooo long ago but I just wondered how you are now? Do you suffer with popping of your ears at all still or the feeling they are blocked at all? 
  • Babz36
    Babz36 paulette1966

    Posted

    Hi hun! 

    My dizzies started in March too. I was out with my mum in llandudno on mothers day and bam it just hit me. Mine too has never gone away. I can't say it's worse but I do get good days and bad days (at the minute im having a bad week) I suffer with anxiety long term anyway but I went back on 40mg Citalopram a day and 20mg amitryptyline at night. I also take 5mg of betahistine three times a day. 

    I see ENT next week but my Dr is adamant its labyrinthitis but my brain is struggling to compensate for the damage it has done to my ears. I too want my life back as I'm a 37 year old single mum of 4 so being like this is no fun! 

    Are you on facebook? There is a fab support group on there called labyrinthitis support. Everyone is so friendly and helpful. It's also nice to know you aren't alone in suffering from this horrid thing. 

    • paulette1966
      paulette1966 Babz36

      Posted

      Thank you fory our reply it helps and I hope that you start to feel better soon I will take a look at that facebook page cheers

       

  • natasha1352
    natasha1352 paulette1966

    Posted

    So maybe i need to look up labyrinth. And yes i know mine has to do more with sinuses and allergies and head and ears cause when i take allergy meds with a decongestant its that much worse. I too have had anxiety ever since this lighheaded dizzy stuff started 9 years ago i get a warming sensation across chest and belly doesn't last long then the dizzy and lightheadedness starts. I am better laying down but i have kids and grandkids so i can sleep all the time.
    • Babz36
      Babz36 natasha1352

      Posted

      I find im better laying down too but as you say you can't sleep all the time! It is a horrid thing to suffer from as no one can see it and most of the time we look fine! Xxx
    • natasha1352
      natasha1352 Babz36

      Posted

      Yes i took some decongestant last night and was even more dizzy and stuff like couldn't even do dishes thought i was gonna fall over and i got mad at the hubby cause he is like can i go to bed or do you want me to stay up with you 😡 no one understands what we go through.
  • Wendl
    Wendl paulette1966

    Posted

    I can relate to all your posts,and just wish I could feel normal again.The medications that I was prescribed really have not helped me at all,but every so often I feel quite a bit better,but then suddenly I feel off balance  again.I also think it has a lot to do with my neck and it is always worse if I am tired or worried.Thoroughly fed up with all this as it stops me doing so much for fear of passing out.I never do!!

    wish it would go ,just as quickly as it came,but no luck yet.

    • paulette1966
      paulette1966 Wendl

      Posted

      Here here well said ! Lets hope we start to get better soon as I have definately had enough of feeling like this thank you !

       

  • craig_31416
    craig_31416 paulette1966

    Posted

    Hi, Does anyone know if we can make a full recovery from this 
    • Babz36
      Babz36 craig_31416

      Posted

      I think you can but the damage is always there. Which I think will reappear from time to time when we get sick or run down. Xx
    • DizzyDarren
      DizzyDarren craig_31416

      Posted

      Nope.....I don't think anyone does make a full recovery. I have been asking the same questions on boards like these for years and no one comes forward and says "Yep I've made a full recover"..It's not going to happen I'm afraid.

      What you will do in time, is put up with it and learn to live with it and you will have better and bad days dependant on your mood and your general wellbeing. As time goes on you'll have more better days than bad. When I say better, I don't mean symtom free, I just mean its better than the bad days.

      I apologise for being gloomy but I am just being honest. I've had this since 2009 and although I am a lot better than I was, I still haven't made a full recovery.

      The reason I won't make a full recovery is because my balance cells in my left ear were destroyed by a virus (That's how my ENT described it), then aint coming back, they're gone. I have to make do with the rest of me to compensate for this and this compensation takes a long, long time.

    • craig_31416
      craig_31416 DizzyDarren

      Posted

      Thanks for the reply, have you got any tips to help cope with this what to avoid etc 

      Thanks 

    • Babz36
      Babz36 craig_31416

      Posted

      Get enough sleep, eat regularly, keep well hydrated and keep as active as you can. There will be some things that make you feel worse but unfortunately that means they are good VRT! Just try to keep yourself busy and out and about as much as you can xx
    • craig_31416
      craig_31416 Babz36

      Posted

      Thanks, I used to play rugby up until I got this about 4 months ago do you think I could play again or do you think it could affect it thanks 
    • Babz36
      Babz36 craig_31416

      Posted

      I'd say give it a try. See how it makes you feel. I see a vestibular physio and she says the more normal things we do that we used to do then the better it is for us xxx 
    • crystal29909
      crystal29909 DizzyDarren

      Posted

      Unfortunately I think I'd have to agree with you. I've been dizzy for 4 months now. The worst was the first month and very slowly and with vestibular therapy it did get to the point of being tolerable. But it never fully went away. Some days are better than others. Like you my ENT tested me and said I had 67% damage in my right ear and it will never go away. I just need to retrain my brain to find its new center of balance. I try very hard not to think about and I also try even harder to continue my life like I did before it but sometimes it can be very frustrating. Every dr. I seen said it will go away in 4-6 weeks. I don't think they really understand it. I do know that stress and not enough sleep really make it worse for me. Well let's hope we all get better.
    • Babz36
      Babz36 craig_31416

      Posted

      There's a group on Facebook called labyrinthitis support which ive found really helpful if you're on, check it out x
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