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Anyone feel like talking? I'm anxious about labyrinthitis.....

Posted , 9 users are following.

debbie82116
debbie82116

Anyone out there got some good coping techniques? Positive thoughts? Feeling alone with this....

0 likes, 40 replies

40 Replies

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  • gem1971
    gem1971 debbie82116

    Posted

    I've pretty much diagnosed myself with this because I can get no answers to my feelings! What were your symptoms?
    • debbie82116
      debbie82116 gem1971

      Posted

      Feel drunk dizzy, plugged left ear with pressure, neck pain, headaches, just feel unwell....almost flu like. I'm in my 9th week. You?
    • gem1971
      gem1971 debbie82116

      Posted

      I'm lightheaded and a bit spaced out, sometimes feel sick and mild ear pain! Just feel rubbish, luckily none of the room spinning I've heard about. Also some kind of sinus/eye area head pains
  • sarah72691
    sarah72691 debbie82116

    Posted

    I've been drunk dizzy for 8 years. No doc can figure it out.

    Find something that makes you feel as relaxed as you can in that state. Sometimes it helps to try stretching! I hope you feel better.

    It even helps to have a calming smell around (EG- I light clean linen scented candles).

    Wish you all the best

  • ken_63099
    ken_63099 debbie82116

    Posted

    Antidepressants for me helped, even with the dizziness. I'm taking cymbalta. There are generic too. Yoga helped me immensely, breathing technics and meditation. I also work with my brain with meditation music and got the audio "heal your body using the power of your mind". I listen to it at night. I did acupuncture too and all together helped me very much. Now I can live my life. Some times it tries to come back but I have been able to control it. I hope it helps.
    • debbie82116
      debbie82116 ken_63099

      Posted

      Good for you Ken. I take an anti depressant as well. I see a therapist too. I checked out the audio you mentioned. She is very good.

      Have your symptoms disappeared then?

    • ken_63099
      ken_63099 debbie82116

      Posted

      Hi Debbie. All symptoms became mild. Some days I feel completely normal again, I feel happy most of the time and I can go on with my life. I spend 5 months of my life feeling I was never going to go back and going crazy. Every day I got better and better. Now after almost a year since I had this, I feel well. As I said, sometimes it tries to come back but I keep myself busy and I'm still taking antidepressants and doing yoga. I hope it helps.
    • ken_63099
      ken_63099 debbie82116

      Posted

      No, but I heard of them. I really tried everything I could, the dizziness, pressure and crazy symptoms starting fading with yoga and antidepresants.
  • Guest
    Guest debbie82116

    Posted

    Hi debbie

    I'm in my 10th week and waiting for an ENT appointment in January. !

    Have you an appointment ? 

    I have to say I'm not expecting any miracle cure, as this condition seems to have a myriad of versions and its effect on individuals can be so diverse.and with some they suffer for weeks, others its months and horrendously others have had it for years ! 

    As there appears to be no ' magic  pill ' to make it go away, it seems once the virus has gone,if the symptoms remain, then it's down to,the extent of the damage done to your vestibular system. In this case it seems the only recourse it VRT - to train the brain to reprogram itself to work with the balance vs hearing vs eyesight it's now got.  And for many, it would appear, it works and eventually they get to manage almost as good as new. 

    I hope this is the case. 

    In the meantime, I'm taking no drugs( eg anti sickness etc ) Thankfully I'm not sick with the unbalanced state of my world. I've stopped having my two glasses of wine of an evening. And that's a real bore. ! I keep active, have to  - I live on my own so everything that has to be done , has to br done by me smile I have a dog, so daily walks are a given, and though it sometimes feels I'm walking in a strange distorted world, walk I do. Although I can't walk as far now, without feeling really weak.

    im OK sitting down, reading, on the iPad etc, even driving is fine. It's just whenever I'm in an upright position and move. Then my legs feel out of sync  with my brain, my eyes feel as though they're working overtime trying to make sense of the fact it wants to focus on one place, the inner ear is saying something else and your brain is unsuccessfully trying to make sense of the whole thing.

    I feel as though I'm compensating all the time, however subtly, to the movements of walking, gauging distances and manoeuvring round things or changing direction.Short distances seem the worse, just getting up,from sitting down , turning away from the chair, heading for a doorway, then turning left or right into another room presents avoidance procedures so you don't collide with the door frame ! 

    I find  if I'm carrying something in either or both hands, this presents issues too.

    I've gone partially deaf in my left ear, some days it's worse than others. My head sometimes feels it's full of cotton wool, and often my vision is quite blurred.

    its all very weird and strange. It's disconcerting and very frustrating to be like this, with seemingly no end in sight. On good days I feel great that I appear to be improving and feeling less unbalanced etc, only then to feel just as bad or worse the very next day. As I've said - very frustrating.

    But I've said I'm not going to let it get me down, I refuse to get depressed. I won't let this 'thing' get the better of me.

    ive rambled on - sorry !

    I hope you're managing and get to beat this horrible condition soon. 

    Peter

     

    • debbie82116
      debbie82116 Guest

      Posted

      Hi Peter

      No need to apologize! I wanted you to ramble on!

      Ive seen an ENT who wouldnt diagnose me until i had more testing. Well since Ive had this before, i feel the symptoms are very similar and i only agreed to a hearing test. My hearing has not changed in that ear since 2008 but i did have a 46% vestibular loss to my balance nerve with my last bout of this in 2008. I can't believe it has come back.

      I started my VRT exercises a week ago. They make me dizzier every time i do them....ugh! I'm told they will get easier with time as the brain learns to compensate.

      I am on a mild anti depressant for anxiety as these symptoms drive me mad!

      I'm not able to work so i feel house bound...although i do manage to walk each day...i also have a dog.

      You have a good outlook about this illness. Keep it up!

      Please continue to write me any time as to how you're progressing. I'm on my 9th week and it feels like forever!

      Debbie

    • kellie12337
      kellie12337 debbie82116

      Posted

      Hi there just wandering what kind of exercises u do? I'm in therapy which is ending this week. It has helped a little but all we do is balance exercises.
    • debbie82116
      debbie82116 kellie12337

      Posted

      I do eye exercises - looking at a letter on the wall and turning my head side to side for 30 seconds then up and down for 30 seconds. Also walking straight ahead and turning my head side to side in a 20 foot length hallway. There are many others but they are based on what MY particular weaknesses are. I had to do tests first which determined what my exercises would be. You need to see a vestibular rehab therapist.
    • kellie12337
      kellie12337 debbie82116

      Posted

      Thanks for information. Do they help you. Therapy has helped some but still dizzy most of the time just not as intense. I seen exercises like this online
    • debbie82116
      debbie82116 kellie12337

      Posted

      I just started them one week ago. Its too early to tell. They bring on dizziness and that is what should happen. It takes time for the brain to learn to compensate.
    • sarah72691
      sarah72691 debbie82116

      Posted

      Does anyone in this post feel like their eyes are working over time sometimes? I feel like I can't actually focus on something. Almost like I'm only usin my peripherals. It's weird.
    • Guest
      Guest sarah72691

      Posted

      Absolutely. My GP says when your brain is receiving mixed signals from your inner ear, it seeks to make an order of things by making another sensory receptor work overtime. My eyes most days are unfocused with blurred vision.
    • sarah72691
      sarah72691 Guest

      Posted

      I have a bone that's eroding in my ear right next to my brain. ENT said it shouldn't affect my vision but I think he's full of it.
    • debbie82116
      debbie82116 Guest

      Posted

      I get that too Peter. The pressure in my head and in my left ear is the worst. Did you say you have that too?
    • darren56189
      darren56189 debbie82116

      Posted

      hi I got a sheet off my ent to do Cawthorn cooksey exercises iv got laberinthis I got this in April I'm still suffering the systems of bit of light headness and my eyes are off sync with my head movement s iv been told it's like re training your brain for the signals to work them self's out I'm just waiting to hear off my doc so can sort the vrt out for me in the meantime I'm been doing them by my self it makes me a bit worse now and then like hope these work eventually
    • debbie82116
      debbie82116 darren56189

      Posted

      Hi Darren

      Yes VRT makes you more dizzy for sure. I am doing special exercises based on a test of various movements. My exercises are based on the movements that produced the most dizziness.

      I am very concerned about the pressure and fullness in my left ear. Do you suffer from this type of pressure too?

    • darren56189
      darren56189 debbie82116

      Posted

      No nothing like that it's just mainly my head feels a bit light and my eyes are off sync a bit like are you still on medication Wile doing the pyhsio iv been told to come off mine when I start coz it can hinder the process
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